Rheumatoid Arthritis

Hi there....
I do have a rheumy and I have had one since I was dx in 1983. I
loved the first rheumy I had who dx me, but now that we have
moved..he is too far away. Now I see another rheumatologist (medical
trainee) at the arthritis clini who is very knowledgeable and knows
all the latest technologies, etc. I am on medicaid for my disability
so sometimes I don't get the first pick of doctors. But this dr is
good just doesn't take the time..always in a hurry when you see him.
I compare him to my first rheumatologist and he lacks in time spent
in the room with me but he does love ordering tests. lol I am going
to have to put the brakes on him next visit. I have always gone to a
rheumatologist since being dx and I am still in bad shape...
I was on mtx and enbrel then dr switched me to celebrex and humira.
I was having elev liver enzymes and some sores/cuts were very hard to
heal so... we will see what he says on Monday. He took me off the
celebrex and put me on voltaren. It's like medication tag.... see
if this works....
I have problems with my crooked hands, knees tend to get a lot of
inflammation. Forget the feet..c\hammertoes, bunions..one was
operated on but is back to not comfy again. Feels like I am walking
on bone. Wear dearfoams for regular shoes. I am going to get dr to
order orthotics...had them once. I was pretty lucky until about 2
yrs ago and then things started really getting more painful and it
was harder to do things like everyday tasks and walking. I was my
dad's caretaker for 7 yrs so I think God helped me with my r/a then
my dad passed 2 weesk after WTC and it was downhill from then on. At
least I had the strength to take care of him in his final years.
When dx i thought r/a was crooked hands...it was hard to
walk...eyesight problems, etc The last 5 yrs or so, i have found out
about vasculitis, lymphoma, attacks the heart, lungs, etc It was
shocking at the time. I'm still surprised.
This weeks People mag has an article about kathleen Turner and her
bout with r/a. She describes it pretty good..."what this disease
does is you always hurt. Always, always, always. Lying down doesn't
help, standing up doesn't help. It also gives you a low level fever
and a sort of the flu all the time. You're always fighting yourself,
always feeling like you are losing. The meds make you sick as a
dog. And bloated and i couldn't eat or sleep." She says she drank
because it killed the pain for awhile. Dew Barrymore is on the cover.
She talked about her daughter having to help her open a jar of
moisturizer...she was 4yrs old. That her daughter helped to feed her
when she couldn't hold a spoon and she couldn't catch her on the
swing set when she wanted her to. It was truthful and you know she
is one of us.
So, don't worry i do have a rheumy..just wanted to know what others
were doing. It is a serious disease and you get to know how serious
when you deal with it for so long.
Hope you're having a nice weekend....
Hugs..Paula

Paula..how can you be reached.IM. Can I have your email address? Skye

I went without a rheumy for about 2 years.Quess what? I am now in bad
shape.I prayed and prayed and I now have what must be the most
wonderful educated Dr. She immediately had blood drawn and then put
me on Methatrexate and Enbrel.But I keep getting infections and have
to stop. Meanwhile the RA invaders are attacking the planet called
Skye. They battle with my knees they do alot of warring with my
hands .They must not know how I love my music.I wish I would have
taken it more seriously. This Is a serious illness. Youo can get
vasculitis,glacoma,lymphoma (Cancer of the Immune system) It can
attack your heart,lungs,central nervous system and your brain. By all
means .no matter how far you have to drive..Find a Rheumatologist and
a damn good one. I have found that the Universitys' have the best Drs.
I saw one at UofM michigan..UofA Never a problem. Please please do
not think for 1 second that it is not SERIOUS.Just worried..Skye

Hi Skye..

Thank you for the Lidoderm info. I'm going to try that. I think I've used all the pain ointments that the drugstore sells.

The weather in Ohio is great. We have had a long winter.

Does everyone here have a rheumatologist or do some of you go to a primary care dr for your arthritis? I am not crazy aboput my rheumy and they are as hard to find as "hens teeth" (bet you haven't heard that for awhile). I have tried to look for a p/c that specializes in r/a but the closest I have come was a p/c that specializes in geriatrics. We need more rheumys in my "neck of the woods" (another oldie) because the ones we do have are so busy that they just don't seem to take time out for you. They're great at ordering tests but not on bedside manner.

Paula

Hello To answer your questions..all I know is what happens to my
body.but Inflammation does occur and redness like over the knuckles.
About being bloated? I don't know Are you on any meds? And as far as
depression goes I do get depressed sometimes not always but keep it
in check. What I did for along time ,was to keep a journal. I made it
into a graph like one. One column read Time of Day Then med taken Did
it work? Level of pain? (The mayo clinic has a wonderful pain chart to
go by 1-10) Type of pain. Percursors( Were you doing something before
the pain hit)It was helpful to myself and my doctors. And now I have
really good pain conrol plus on Dmard.Embrel and MTX. I hope this
helps. Some of the others will more than likely add to this..Hope to
chat with you soon.....Skye

G'Day all from Tucson Az where the sun shines all day.And you shake
and bake every time you go for a walk to the car...I love it.Good for
the joints.the heat that is. I was talkin in the ealy morning hours to
one of our members and I told her what I use . And it really helps
alot. There is an ointment and patchs called Lidoderm. It is Lidocaine
like the stuff the dentist gives you. I use the ointment and then wrap
my arms or legs with ace bandages. It really helps alot. It doesn't
make your skin numb but works down deep.It is not hot or cold. I used
to get the patches when I lived in California and Michigan but here in
Az my ins wont pay for it but they pay for the ointment.Highly
recommend.Especially if you have fibromyalgia.I cannot say enough good
things about it. Highly recommend. Okay thats out of the way.. How
is the water situation going? lol Skye

Disciplined Doctors

Finding Public Listings of Disciplined Doctors

http://www.advocateweb.org/hope/disciplineddoctors.asp

Saw this on another list and thought some of you might be interested.

Nina

Overview of glucocorticoid induced osteoporosis
Glucocorticoids are widely used in the treatment of patients with chronic,
noninfectious, inflammatory diseases. These include asthma, pulmonary
disease, rheumatoid arthritis and other connective tissue diseases,
inflammatory bowel disease, and organ transplantation. However, these agents
are double-edged swords: Despite their beneficial anti-inflammatory and
immunosuppressive effects, adverse effects are frequent.
Glucocorticoids have a profound effect on bone metabolism and are the major
cause of secondary osteoporosis. Skeletal wasting is most rapid during the
first 6 months of glucocorticoid therapy, with trabecular bone more affected
than cortical bone. Daily prednisone doses of 7.5 mg often result in
significant bone loss and increased fracture risk. Laan et al.[ 1 ]
demonstrated an average loss of 8% of trabecular bone density and a 2% of
cortical bone density in the lumbar spine over a 20-week period in people
treated with a mean dose of prednisone of 7.5 mg/day. A corresponding
increase in early fracture risk has been described, even independent of
changes in BMD, as quickly as 3 months after beginning glucocorticoid
therapy[ 2 ],[ 3 ].
Bone density in steroid-treated individuals, studied cross-sectionally, is
related both to the duration of their glucocorticoid treatment and to the
dose of these drugs. Scientists do not yet know whether there is a threshold
dose of glucocorticoid below which osteopenia does not occur; alternate-day
glucocorticoid regimens have not been shown to produce less bone loss than
daily regimens. Even inhaled steroids appear to increase bone loss when used
chronically[ 4 ],[ 5 ],[ 6 ]. However, inhaled steroids pose less risk than
oral glucocorticoids. Regardless of the form of administration, using the
lowest dose of glucocorticoids needed to control symptoms will help minimize
bone loss.
Initial rapid bone loss of 5% to 15% within the first 6 to 12 months
Trabecular bone preferentially affected
Bone loss potentially reversible with lowering of dose or cessation of
steroid
According to the American College of Rheumatology (ACR) Task Force on
Osteoporosis Guidelines, the magnitude of GIOP suggests that the majority of
patients receiving long-term glucocorticoid therapy have low bone mineral
density (BMD), and that over one-fourth sustain osteoporotic fractures. The
prevalence of vertebral fractures in asthma patients receiving
glucocorticoid therapy for at least 1 year is 11%, and
glucocorticoid-treated patients with rheumatoid arthritis have an increased
incidence of fractures of the hip, rib, spine, leg, ankle, and foot. Thus,
GIOP is an important clinical problem that involves both prevention and
treatment.
http://www-cme.erep.uab.edu/onlineCourses/giop_rev1/contents1of1.asp

Saw this on another list and thought some of you might be interested.

Nina

Preventing glucocorticoid-induced osteoporosis
Sep 15, 2002
Patient Care
Bone loss from glucocorticoid therapy is immediate and occurs at the
highest rate during the first 6 months. Judicious use of calcium, vitamin D,
hormone replacement therapy, and bisphosphonates at the onset of long-term
treatment can improve bone density.
Exogenous glucocorticoids are the treatment of choice for many medical
conditions, and their beneficial effects can be quite dramatic. Yet this
class of drugs is potentially one of the most toxic, with side effects
ranging from less serious medical conditions such as truncal obesity,
striae, and cataracts, to more serious ones such as hypertension, diabetes
mellitus, osteonecrosis, and osteoporosis. Glucocorticoids have been a known
risk factor for osteoporosis since the 1930s, when their association with
skeletal changes and endocrine tumors was first reported.1
By the 1950s, exogenous glucocorticoid therapy became widespread, and
the severity of glucocorticoid-induced osteoporosis (GIO) was more fully
appreciated. Recent data suggest that osteoporosis will develop in
approximately 50% of patients who undergo long-term glucocorticoid therapy,
thereby increasing their risk of sustaining spontaneous fractures.2
Long-term therapy with 7.5 mg/d of prednisone is associated with an average
of 3% bone loss annually. Despite its prevalence and significant morbidity,
this common iatrogenic disease is often underrecognized and inadequately
treated. This article will review the problem and suggest solutions.
HOW GLUCOCORTICOIDS CAUSE BONE LOSS
Bone is actively remodeled throughout adult life. Even in the absence
of glucocorticoid exposure, 25% of trabecular bone and 3% of cortical bone
are remodeled annually.
Osteoblasts and osteoclasts are the cell types largely responsible for
bone turnover. Osteoblasts are cuboidal cells found in clusters at the bone
surface. They produce a layer of osteoid, which matures over a period of 10
days by a process of calcification that, over the course of several months,
results in new bone. Osteoclasts are multinucleated giant cells responsible
for bone resorption. They attach to bone matrix via integrin receptors,
which help to create pockets of extracellular space bordered by folds of
ruffled osteoclast membrane. This process creates secondary lysosomes
characterized by a low pH and an enzyme-rich environment in which bone
matrix degradation occurs. When glucocorticoids cause bone resorption to
occur at a faster rate than bone formation, osteoporosis results.
Corticosteroid receptors are partitioned into two types:
mineralocorticoid (found in CNS and renal tissue) and glucocorticoid
(present in virtually all cells of the body). Glucocorticoid receptors
mediate both the anti-inflammatory and metabolic effects of corticosteroids.
When glucocorticoids bind to the cellular receptors, the resulting complex
migrates to the nucleus where gene expression is induced. Consequently, all
levels of the inflammatory cascade are inhibited. Glucocorticoids are most
effective at suppressing T lymphocytes and natural killer cells, but they
tend to be less effective at inhibiting mature B cells. Corticosteroids also
suppress proinflammatory cytokines such as tumor necrosis factor-alpha and
interleukin-1. They have inhibitory effects on inflammatory mediators such
as gamma interferon, prostaglandin E2, and leukotrienes. The overall result
appears to be preferential suppression of cellular immunity rather than
humoral immunity.
GIO occurs as a consequence of multiple direct and indirect effects of
glucocorticoids on bone formation and resorption, the metabolism of calcium
and vitamin D, and the modulation of sex hormones. Glucocorticoids directly
inhibit osteoblast proliferation and matrix synthesis and cause a decline in
circulating levels of osteocalcin. They have also been implicated in
osteoblast apoptosis. Since bone formation is linked to body mass and muscle
strength, the catabolic effects of corticosteroids on muscle may indirectly
reduce bone formation. Hence, glucocorticoids weaken bone formation by way
of a glucocorticoid-induced myopathy with its associated loss of the trophic
effect of muscle stress on bone.
Corticosteroids also reduce sex hormone levels. They specifically
suppress estrogen, luteinizing hormone, and follicle-stimulating hormone in
women, which normally act to inhibit bone resorption. Moreover, a loss of
estrogen is associated with a net increase in numbers of osteoclasts. The
resultant hypogonadism favors osteoclastic over osteoblastic activity.
In addition, glucocorticoids may indirectly accelerate bone resorption
by causing excessive calciuria. The reduced availability of substrate for
bone formation that results is worsened by impaired renal tubular
reabsorption of calcium caused by glucocorticoids as well as reduced serum
levels of 1,25-dihydroxyvitamin D. This net loss in calcium causes a
secondary hyperparathyroidism, leading to further resorption of bone.3
Furthermore, glucocorticoids also decrease trabecular bone mass by
interfering with bone-active cytokines such as insulinlike growth factors.
GIO becomes detectable by sensitive radiologic methods as early as 1
month into systemic glucocorticoid therapy. Dual-energy x-ray absorptiometry
(DXA) and quantitative CT are radiologic methods available for detecting low
bone mass. Of these techniques, DXA is less expensive and more widely
available. T-scores, which are used in clinical decision-making, represent
the number of standard deviations below or above the peak bone mass in a
young adult reference population of the same sex. According to the World
Health Organization, a T-score above -1 reflects normal bone density,
between -1 and -2.5 is osteopenia, and below -2.5 signifies osteoporosis.3 A
T-score below -2.5 in addition to a personal history of fractures indicates
severe osteoporosis.
Individuals at greatest risk for GIO are those experiencing high bone
turnover or those with a preexisting imbalance between resorption and
formation, including children aged 15 and younger, adults older than 50,
postmenopausal women, and immobilized patients. Bone loss occurs mostly in
areas of high turnover, such as trabecular bone of the vertebra, and
resulting spontaneous fractures commonly involve the vertebrae or ribs.4,5
In one study, current corticosteroid users were 2.7 times more likely to
sustain a hip fracture compared with nonusers.6
Significant metabolic bone disease due to glucocorticoid therapy
occurs in a short amount of time. Even low-dose, 6-week corticosteroid
treatment is associated with adverse effects on bone metabolism.7 In one
study, 10 mg/d of prednisone over a 2-month period adversely affected
calcium and bone metabolism by uncoupling bone formation and resorption.7
Another study found that 20 weeks of treatment with low-dose prednisone
induced a mean trabecular bone mineral density decline of 8.2% in patients
with rheumatoid arthritis.8 Susceptibility to fracture is dependent on
dosage, and the overall risk of fracture is increased during oral
corticosteroid therapy, becoming apparent within the first 3 months of
treatment.9 Therefore, preventive therapy for osteoporosis should commence
when glucocorticoids are first prescribed.2
PROPHYLAXIS AGAINST GIO
Early strategies for the prevention and treatment of GIO blunted the
adverse impact of steroids on bone but did not consistently improve bone
strength, as has been seen with the more recently released class of agents
known as bisphosphonates. Among those strategies were sodium restriction
with concurrent thiazide diuretic therapy and treatment with sodium fluoride
or calcitonin. In particular, the use of thiazide diuretics with salt
restriction remains of unproved benefit, while treatment with vitamin D
carries a risk of hypercalciuria and urinary stone formation. Sodium
fluoride stimulates bone formation but remains controversial because of the
resultant abnormal bone quality noted during such therapy.10
Over the past decade, however, some notable inroads toward the
reduction of corticosteroid-induced bone mineral loss were made.11-15 Most
notably, these include gonadal hormone supplementation and bisphosphonates,
both of which have antiresorptive properties and may maintain or increase
bone density in some persons taking corticosteroids. Calcitonin can be
effective in some cases and may be considered when bisphosphonates are not a
viable option.
In addition to using those therapies, the American College of
Rheumatology (ACR) recommends treating confounding comorbid conditions such
as hyperthyroidism.2 Lifestyle alterations that may improve bone health
include exercise, reduction of alcohol use, and avoidance of cigarettes.
Although the best preventive measure is to discontinue use of
glucocorticoids, in many situations this course of action is not feasible.
Glucocorticoids should be prescribed at the minimum effective dose. Topical
or inhaled agents are preferred over systemic corticosteroids, if practical.
Because bone loss is most rapid during the first 6 months of glucocorticoid
therapy, the ACR advises physicians to start all patients on calcium plus
vitamin D at the onset of treatment.
Calcitonin and vitamin D metabolites
Providing adequate substrate for bone formation includes
supplementation with calcium in addition to vitamin D. A daily intake of
1500 mg of elemental calcium, either through diet or supplements, reduces
bone turnover. In most patients, cholecalciferol, 400 to 800 IU/d, is
sufficient to maintain serum levels in a proper range. If high-dose
cholecalciferol is used, carefully check both serum and urine calcium levels
periodically.
Intranasal salmon calcitonin administered in dosages up to 400 IU/d
was shown in several studies to blunt the loss of bone mineral content.10
One study comparing prophylactic use of calcium, calcitriol, and calcitonin
found that only treatment with calcium and calcitriol (with or without
calcitonin) prevented or reduced bone loss from the lumbar spine.15 A
significant side effect of treatment was hypercalcemia. Variable dosing of
corticosteroid therapy and the lack of a placebo control group, however, may
limit interpretation of results of this particular study. Expert
consultation should be obtained before prescribing calcitriol.
Hormone replacement therapy
Corticosteroids reduce levels of sex hormones, thereby indirectly
facilitating osteoclastic bone resorption. Therefore, patients taking
glucocorticoids may benefit from hormone replacement therapy (HRT), a
strategy that is still being investigated. One study using gonadal hormone
replacement for patients receiving chronic glucocorticoid therapy
demonstrated either stability or improvement of bone mineral density in both
men and women.16
Bisphosphonates
Synthetic pyrophosphates that resist chemical
degradation-bisphosphonates-have recently become key players in treating and
preventing GIO. A study assessing the benefit of alendronate for patients on
long-term corticosteroid therapy found that those taking alendronate showed
increased bone mineral density in the lumbar spine, hips, and overall
compared to patients taking placebo.12 In addition, fewer new vertebral
fractures were observed in the alendronate group. The evidence suggests that
prophylaxis with alendronate, 5 mg/d, may be warranted in patients receiving
long-term glucocorticoids. More recently, a third-generation oral
bisphosphonate was shown to prevent bone loss in patients initiating
corticosteroid treatment. Risedronate, 5 mg/d, resulted in significant
positive treatment effects in both men and women after 12 months of
intervention.13 Other bisphosphonates that may help treat or prevent GIO
include IV pamidronate and the cyclical administration of etidronate.
Anabolic therapy
Recently, anabolic therapy, with parathyroid hormone in particular,
has shown promise in the treatment of GIO.17 Early studies, however, do not
reveal consistent improvement throughout the skeleton, and primary
prevention studies are yet to be completed.
EVIDENCE OF UNDERTREATMENT
Despite recent guidelines published by the ACR and numerous studies
establishing the efficacy of preventive therapy against GIO, growing
evidence suggests widespread underutilization of these measures. A telephone
survey of patients on long-term glucocorticoids reported that 29% were
taking calcium supplements and 45% were receiving vitamin D. Of the
postmenopausal women surveyed, 40% were receiving HRT, 14% were receiving
bisphosphonates, and 29% had undergone a DXA scan.18 In another study,
charts of 215 clinic patients on glucocorticoid therapy for more than 1
month were reviewed. Prophylaxis against GIO was prescribed for 58% of the
patients.10
The rheumatology staff at The George Washington University Medical
Center, Washington, DC, performed a similar retrospective chart review. In
this unpublished study, only 29% of the patients surveyed were given
preventive therapy, and only 16% were assessed via DXA scan. All of the
patients evaluated and given prophylaxis were women, most of whom were in
their 40s. Preventive therapy was typically initiated after the patient had
taken glucocorticoids for more than 2 years and at dosages equivalent to
more than 10 mg/d of prednisone. The results showed that even
university-based rheumatologists who commonly confront the adverse effects
of excess exogenous glucocorticoids infrequently evaluate for, or provide
prophylaxis against, GIO.
A history of a DXA scan correlated with a higher rate of preventive
therapy by increasing the likelihood of diagnosing GIO. Therefore,
increasing physician awareness concerning issues surrounding GIO may be of
significant importance in detecting and treating patients with metabolic
bone disease. These studies show the need to initiate a better approach to
educate patients and physicians regarding the importance of GIO prevention.
A checklist addressing issues pertinent to patients taking
glucocorticoids, such as adverse effects of corticosteroids, risk factors
for osteoporosis, previous DXA scan results, and preventive therapy
selected, may be a useful tool for physicians (see "Monitoring patients on
glucocorticoids"). This type of document can be placed in the charts of all
patients when initiating glucocorticoid therapy to serve as a reminder of
the increased risk of osteoporosis and the need for prophylaxis.
EDITED BY STACY DILORETO
REFERENCES
1. Cushing H. Basophile adenomas of the pituitary body. J Nerv Ment
Dis. 1932;76:50-56.
2. American College of Rheumatology Task Force on Osteoporosis
Guidelines. Recommendations for the prevention and treatment of
glucocorticoid-induced osteoporosis. Arthritis Rheum. 1996;39:1791-1801.
3. NOF Physician's Guide: Diagnosis. National Osteoporosis Foundation
Web site. Available at: http://www.nof.org/physguide/diagnosis.htm .
Accessed October 9, 2000.
4. Seeman E, Wahner HW, Offord KP, et al. Differential effects of
endocrine dysfunction on the axial and the appendicular skeleton. J Clin
Invest. 1982;69:1302-1309.
5. Lane NE, Mroczkowski PJ, Hochberg MC. Prevention and management of
glucocorticoid-induced osteoporosis. Bull Rheum Dis. 1995;44:1-4.
6. Cooper C, Coupland C, Mitchell M. Rheumatoid arthritis,
corticosteroid therapy and hip fracture. Ann Rheum Dis. 1995;54:49-52.
7. Lems WF, Jacobs JW, Van Rijn HJ, et al. Changes in calcium and bone
metabolism during treatment with low dose prednisone in young, healthy, male
volunteers. Clin Rheumatol. 1995;14:420-424.
8. Laan RF, van Riel PL, van de Putte LB, et al. Low-dose prednisone
induces rapid reversible axial bone loss in patients with rheumatoid
arthritis. Ann Intern Med. 1993;119:963-968.
9. Van Staa TP, Leufkens HG, Abenhaim L, et al. Use of oral
corticosteroids and risk of fractures. J Bone Miner Res. 2000;15:993-1000.
10. Eastell R, Reid DM, Compston J, et al. A UK Consensus Group on
management of glucocorticoid-induced osteoporosis: an update. J Intern Med.
1998;244:271-292.
11. Boutsen Y, Jamart J, Esselinckx W, et al. Primary prevention of
glucocorticoid-induced osteoporosis with intermittent intravenous
pamidronate: a randomized trial. Calcif Tissue Int. 1997;61:266-271.
12. Saag KG, Emkey R, Schnitzer TJ, et al. Alendronate for the
prevention and treatment of glucocorticoid-induced osteoporosis.
Glucocorticoid-Induced Osteoporosis Study Group. N Engl J Med.
1998;339:292-299.
13. Cohen S, Levy RM, Keller M, et al. Risedronate therapy prevents
corticosteroid-induced bone loss: a twelve-month, multicenter, randomized,
double-blind, placebo-controlled, parallel-group study. Arthritis Rheum.
1999;42:2309-2318.
14. Buckley LM, Leib ES, Cartularo KS, et al. Calcium and vitamin D3
supplementation prevents bone loss in the spine secondary to low-dose
corticosteroids in patients with rheumatoid arthritis: a randomized,
double-blind, placebo-controlled trial. Ann Intern Med. 1996;125:961-968.
15. Sambrook P, Birmingham J, Kelly P, et al. Prevention of
corticosteroid osteoporosis: a comparison of calcium, calcitrol, and
calcitonin. N Engl J Med. 1993;328:1747-1752.
16. Lukert BP, Johnson BE, Robinson RG. Estrogen and progesterone
replacement therapy reduces glucocorticoid-induced bone loss. J Bone Miner
Res. 1992;7:1063-1069.
17. Lane NE, Sanchez S, Genant HK, et al. Short-term increases in bone
turnover markers predict parathyroid hormone-induced spinal bone mineral
density gains in postmenopausal women with glucocorticoid-induced
osteoporosis. Osteoporos Int. 2000;11:434-442.
18. Aagaard EM, Lin P, Modin GW, et al. Prevention of
glucocorticoid-induced osteoporosis: provider practice at an urban county
hospital. Am J Med. 1999;107:456-460.
ARTICLE CONTRIBUTORS
DEBORAH T. ZAREK, MD, Internal Medicine Resident, Christiana Care
Health System-Christiana Hospital, Newark, Del.
JAMES D. KATZ, MD, Assistant Professor of Medicine, Division of
Rheumatology, The George Washington University Medical Center, Washington,
DC.
http://www.patientcareonline.com/patcare/article/articleDetail.jsp?id=117083

Saw this on another list and thought some of you might be interested.
Nina
First-Time Generic Approvals: Sandostatin, Dantrium, Grifulvin V,
Depo-Medrol
Yael Waknine
Medscape Medical News 2005. © 2005 Medscape
April 13, 2005 The U.S. Food and Drug Administration (FDA) has
approved first-time generic formulations of octreotide acetate
preservative-free injection for the treatment of acromegaly and for
symptomatic treatment of metastatic carcinoid and vasoactive intestinal
peptide-secreting tumors; dantrolene sodium capsules for controlling
manifestations of clinical spasticity due to upper motor neuron
disorders and for the prevention of malignant hyperthermia;
griseofulvin oral suspension for the treatment of infections caused by
susceptible dermatophytes; and methylprednisolone acetate injectable
suspension for the treatment of conditions requiring injectable
corticosteroid therapy.
Generic Octreotide (Sandostatin) for Acromegaly, Symptomatic Treatment
of Certain Tumors
On March 28, the FDA approved generic formulations of octreotide
acetate 0.05 mg/mL, 0.1 mg/mL, and 0.5 mg/mL preservative-free
injection (made by Bedford Laboratories, Inc; brand name Sandostatin,
made by Novartis Pharmaceuticals Corp).
Octreotide acetate injection is indicated for the reduction of growth
hormone and somatomedin C blood levels associated with acromegaly; for
the suppression or inhibition of flushing and diarrhea episodes
associated with metastatic carcinoid tumors; and for the treatment of
profuse watery diarrhea associated with vasoactive intestinal
peptidesecreting tumors.
Generic Dantrolene Sodium Capsules (Dantrium) for Spasticity,
Prevention of Malignant Hyperthermia
On March 1, the FDA approved first-time generic formulations of
dantrolene sodium 25-, 50-, and 100-mg capsules (made by Impax
Laboratories, Inc; brand name Dantrium, made by Proctor & Gamble Co).
Dantrolene sodium capsules are indicated for controlling manifestations
of clinical spasticity resulting from upper motor neuron disorders such
as spinal cord injury, stroke, cerebral palsy, or multiple sclerosis.
It is also indicated for use in preventing recurrence after treatment
of an acute episode and preventing or attenuating the development of
malignant hyperthermia in susceptible patients who require anesthesia
and/or surgery.
Generic Griseofulvin Oral Suspension (Grifulvin V) for Ringworm and
Onychomycosis
On March 2, the FDA approved a first-time generic formulation of
griseofulvin 125 mg/5 mL oral suspension (made by Stiefel Laboratories,
Inc; brand name Grifulvin V, made by Johnson & Johnson, Inc).
Griseofulvin 125 mg/5 mL oral suspension is indicated for the treatment
of infections caused by susceptible dermatophytes.
Generic Methylprednisolone Acetate Injectable Suspension (Depo-Medrol)
for Conditions Requiring Systemic Steroid Therapy
On Feb. 23, the FDA approved first-time generic formulations of
methylprednisolone acetate 40 mg/mL and 80 mg/mL injectable suspension
(made by Sicor Pharmaceuticals, Inc; brand name Depo-Medrol, made by
Pfizer, Inc).
Methylprednisolone acetate injectable suspension is indicated for the
treatment of a variety of conditions requiring administration of
injectable corticosteroids, including acute lymphocytic leukemia,
adrenocortical insufficiency, allergic rhinitis, atopic dermatitis,
inflammatory bowel disease, transplant rejection, and rheumatoid
arthritis.
Reviewed by Gary D. Vogin, MD
http://www.medscape.com/viewarticle/503062

Yes Water..Drink it or don't its up to you all. Too much is bad.too
little is bad. But I would bet that more people are under hydrated
than over. here in the South West there is not ever too much water..
So can we call a truce on the water issue.. Lets talk about somerthing
simple like WAR

Here is something else. I saw this a few months ago and cut and pasted
it into my Sjogren's fact sheet because I have a dry cough and great
dryness in the throat. I took gold many years ago and I had never
heard of this before. I think those are the symptoms of fibrotic lung
disease
Annette
Gold Injections. Unfortunately patients who received them had a very
high long range potential for fibrotic lung disease, kidney disease
and/or bleeding problems, and they are showing up now, years later.
What are the symptoms?
Shortness of breath, particularly with exertion
Chronic dry, hacking cough
Fatigue and weakness
Discomfort in the chest
Loss of appetite
Rapid weight loss

Here is an article I saw today. It is on a site that needs a
password so I don't think I can post the link. It is interesting to
people on methotrexate I would say.
Annette
Experts debate folic-acid supplementation during methotrexate for RA
Apr 14, 2005 Allison Gandey
Rome, Italy - Should folate be added routinely for all patients
receiving methotrexate for rheumatoid arthritis (RA)? Response to
this question of clinical practice is mixed, but many say yes. "Folic-
acid supplementation in patients with RA receiving methotrexate
appears to be safe, inexpensive, and easily administered," said Dr
Louis Bridges (University of Alabama at Birmingham and
www.jointandbone.org editorial board member). "It has been
consistently shown to reduce side effects of methotrexate without
adversely affecting efficacy and may have beneficial cardiovascular
effects."
In a review article published in Rheumatology and previously reported
by rheumawire, Drs SL Whittle and RA Hughes (Ashford and St Peters
NHS Trust, Chertsey, Surrey, UK) advocated for folic-acid
supplementation for all RA patients on methotrexate [1]. They
write, "We recommend a pragmatic dosing schedule of 5 mg of oral
folic acid given on the morning following the day of methotrexate
administration."
But not everyone agrees with this approach. Responding to the
article, Dr R Manna (Catholic University of the Sacred Heart, Rome,
Italy) and colleagues write, "Although folate use reduces the rate of
side effects of methotrexate treatment, the guidelines for folate
supplementation should state that folate should be added only when
its actual demand increases, such as during an infectious disease or
during antibiotic therapy" [2]. The group's letter to the editor,
published in the April 2005 issue of Rheumatology,
notes, "Supplementation should not be given routinely because a
normal diet can ensure an adequate amount of this vitamin and it can
impair methotrexate therapeutic effects."
Conflicting opinions about the benefits of supplementation
Manna and colleagues point out that there are currently no guidelines
available outlining doses and timing of use. They write, "In our
opinion, low doses of methotrexate without concomitant folate
administration are well tolerated for long periods in the absence of
adverse events." The authors argue that folate supplementation should
be administered only in circumstances leading to folate deficiency to
prevent methotrexate adverse effects. They cite gastroduodenal
atrophy as an appropriate example not previously described in the
literature. "Prophylactic folate for all RA patients on methotrexate
is not strictly requiredexcept in the case of increased folate
requirement."
Responding to the group's letter in an email interview, Bridges calls
their conclusions "untenable." He explains that while the authors
suggest that folic acid should be used only in situations where there
is an increase in demand, such as during an infectious disease or
during antibiotic therapy, it is difficult to definitively know when
there will be increased demand. Bridges notes that since folic acid
is inexpensive, safe, and easily administered, it makes sense to
encourage its routine use.
He also questions the group's assertion that folic acid can impair
methotrexate therapeutic effects. "No reference for this is provided,
and I am not aware of any studies that support this conclusion."
Folic acid may prevent side effects other than elevated liver-
function tests
"In contrast to this study," Bridges told rheumawire, "other studies
have shown that folic acid may prevent side effects other than
elevated liver-function tests [LFTs]. The conclusion that folic acid
does not prevent any toxicity except elevated liver-function tests
does not suggest to me that folic acid should not be routinely used.
In my opinion, the prevention of abnormal LFTs by a safe, inexpensive
medication is advisable."
Bridges adds that while the authors' assertion that a normal diet can
provide adequate folate is true, there may be beneficial effects of
folic supplementation. "For example, the effects of methotrexate on
homocysteine can be prevented with the replacement of folic acid," he
said.
Dr Graciela Alarcon (University of Alabama at Birmingham) says she
agrees. "The vast majority of the population does not consume a diet
that is sufficiently rich in folic acid. While this would be an
effective means to receive folate, most people do not consume the
necessary 400 g through diet alone."
Alarcon says her clinic routinely administers folic-acid
supplementation during methotrexate treatment to prevent side
effects. "Why wait?" she says, "When negative effects can be
prevented." Alarcon echoes Bridges's argument that supplementation is
inexpensive and easily administered.
Regional and national differences for this practice remain
pronounced. While folate supplementation has become routine in the US
since roughly the 1990s, this has widely not been the case in the UK
and Europe.

Nina has sent you a story: "nbc5i.com - HealthWatch - Too Much Water Can Be
Dangerous For Athletes"
the link:
http://www.nbc5i.com/health/4379287/detail.html

You're too funny...what a great attitude. You should write a book
about r/a and all the fun stuff that goes along with it... Your
message could be Chapter One. hee hee It would be a wonderful read,
I'm sure.
Keep that great attitude....
You made me laugh and I know alot of us needed that today so THANKS!!
I may go back and read it Monday before my rheumy appt for a laugh on
my way. Hate the rheumy's...
Paula Ohio

Hi group,
Your friend, Marcia, recommends that you check out FitDay.com!
http://www.fitday.com
FitDay.com provides free online diet & fitness management accounts.
Have a fit day!

Hi Skye,
I enjoyed speaking with you last night on IM but I am not going to
log on today at work. I am having a lot of pain in my arms and
hands and I need to save my typing for work. Hope to speak with
you again soon though!
Elizabeth

well it looks to be another sunny day here in Tucson Az.
Fri 91 Sa 92 then a cold front moves in Sunday 89 Mon 87 and Tuesday
watch out 84 degrees. What is happening to our weather? Good morning
everyone. It is 4:17am and I am stiff as all get out.But we all
probably are.Hello to you on the east coast.............Skye

Saw this on another list and thought you might be interested.

Nina

Herbal Remedies for Arthritis Can Be Risky
NEW YORK (Reuters Health) - People with arthritis are more likely than others to be using herbal remedies, and this increases the chances of serious interactions with prescribed medications, a British study shows.
Echinacea, gingko biloba, devil's claw, ginger and garlic are the most dangerous, Dr. Wendy Holden told Reuters Health.
Echinacea poses a risk of liver damage when used with the more potent anti-arthritis medications known as 'disease modifying antirheumatic drugs.'
The other herbal remedies could aggravate stomach bleeding risks when taken along with nonsteroidal anti-inflammatory drugs such as ibuprofen, or with steroids.
To examine the extent of the problem, Holden, at Nuffield Orthopaedic Center in Oxford, and her colleagues sent anonymous questionnaires to 238 patients being treated by rheumatologists.
A total of 105 subjects (44 percent) had used herbal or over-the-counter remedies in the previous 6 months, the authors report in the Annals of the Rheumatic Diseases.
"This is much higher than the general population," Holden told Reuters Health. "These patients have a condition that will last for life, and they're keen to seek alternatives rather than conventional medications sometimes."
Twenty-six subjects (11 percent) were taking remedies that put them at risk for serious interactions with conventional drugs. Their responses showed that almost all of them were unaware of the risk, although ten of them had sought advice from a health professional before starting.
"Physicians have to be super cautious to make sure they ask what medications the patients are taking," Holden advised. "And patients should be asking their doctors - if they're already on herbal remedies - if they're safe to take with arthritis drugs."
SOURCE: Annals of the Rheumatic Diseases, May 2005.

Hi everyone,

I haven't been able to follow much this week... I'm having some kind of godawful stomach reaction to SOMETHING and I've been vomiting for days. Of course since I am so used to my laundry list of medical abnormalities I assumed it was either a medication-based thing or a liver thing or an ulcer thing or some other panicky health thing... well after days of tests and finally being in the ER for eight hours overnight so I could be rehydrated through an IV, my whole posse of MDs and experts have come to the conclusion that: it was probably something I ate. Oh, just shoot me now. It turned out that I threw up some essential medications a few times in a row, ended up taking too much of one and not enough of another because I couldn't really gauge how much I'd absorbed before vomiting, etc. And I was dehydrated as all hell and not eating solid food for four days, which combined with the medication screwups landed me in the hospital. All because I apparently ate a bad shrimp.
I repeat: shoot me now. And be really careful eating shrimp. All seafood, really. And chicken. And while we're at it, I guess you shouldn't eat any sugar, or white flour, or carbs, or salt, or anything that's at all processed, and of course no red meat, so along with the chicken thing and the fact that you probably should be careful with pork because of tape worms, you basically shouldn't eat meat at all. Or seafood. Or nightshade vegetables, of course, and fruits have natural sugars in them so those are out. Don't eat potatoes or corn because of the starch\carbs thing. And if you eat anything that tastes good, you are GOING TO HELL. This has been a public service announcement from someone with tongue firmly planted in cheek. I'm a little pissed off with food in general right now. I want a cheeseburger or something, but a carefully controlled study recently released by the National Foundation to Promote Bean Curd assures me I'll live ten years longer if I never
drive on the same side of the road as a cheeseburger joint again. Or maybe it just SEEMS ten years longer.

The one thing I noticed while skimming this week's email: Donna, yes, I've had two baker's cysts in my (comparably short) lifetime. Both times I was rushed to the ER and admitted to the hospital because of the possibility it might be DVT, which of course it wasn't, because ultrasounds of my calves revealed ruptured baker's cysts, but those MDs have to make money somehow, so I needed to be "observed" for several days until it became apparent that the ultrasound machine was in fact not deliberately lying.

Jenni

I also get a bout with ecxema every once in awhile. I use Dermarest and it really helps.

Paula

Thank you so much for that info. I have never had that test run
before. I usually have the sed rate test ordered by my dr.
Thansk again..appreciate it..Paula

Hi,
I'm new here, just recently diagnosed but no surprise due to the pain
I've been having for a few years. I'm not really sure what to do next
regarding dealing/treating this disease. I've begun to research it a
little, and plan to do more research when I can find the time. I work
fulltime, go to school part time, and volunteer for a hepatitis C
organization (I had hep c, too & responded to the treatment 4 years
ago). I'm 44 and am pissed that I'm slowing down due to the pain. I
take a multi vitamin, 1000mg. fish oil twice a day, 2 ibuprofen as an
anti-inflammatory, and a glucosomine each day.
What is the basic RA 101 info I need to know in order to be proactive
in my treatment/ management?
I appreciate any help.
Cindy

I think that I saw someone post a number or a website where you can get drugs at a reduced cost or free?

If this is the right group, would someone direct me to it again, please-o-please?

Thanks so much!
Marykins

"Storm Rider"

Original Art © Detha Watson

Used with written permission according to terms

Mary Nellum Designs

Why is it that my face doesn't show yellow when I am on line? Anyone
care to help with this?....Skye again

Lol I have searched back and I see referrences to someone new here
but cannot find out who it is. Any takers?Hello Zoom..

G'Day Folks,the sun is shining brightly. I had the pleasure of
watching it as it came up over the Rincon Mtns. That always starts my
day off well. Happy to be among the living,even if it does come along
with pain. I would like to chat with you all. I finally downloaded AIM
so I can talk to everyone.I just need your IM addy..Mine is AzSkye
I would really like to talk to you all. I need it.....SKye

Thanks for the info Nina... I will definitely look into the green
tea that has 50% catechin. I've heard a lot of good things about
Green tea.
My veins are horrible too. I really don't drink a lot of water and
that would help hydrate. I have told the nurses to use a butterfly
needle and take out of my hand. One just said..oh, that would
hurt...then she continued to stick me a few more times.. I told her
either get another nurse or take from my hand. The other nurse came
in and tried my vein..she was good..she did get it but it's almost a
battle getting them to take from the hand.
I am going to look into the Sleep number Beds...
Anyway who can explain CRP (C reactive protein) test? I had my
bloodwork done and my crp was high..not to the flagging stage but
high. he did say he was going to check my inflammation since I was
hurting. That is the first time a crp test was run on me.
I had so much fun at the rheumy that i get to go back on Monday and
see what they have to say about my xrays. Oh Joy!!! I guess it
could be worse, my significant other is going to Cleveland to talk
about the vet admin getting his colonoscopy scheduled. lol
Talk soon..Paula

[LINK] Everything About Anything
Arthritis

The following article from About was forwarded to you by Marcia.

Lyrica for FMS
http://arthritis.about.com/od/pregabalin/a/lyricafms.htm

Marcia also wanted to add the following comment:

hey, John! maybe this new drug will help you sleep! gentle hugs, Marcia

For more information on this topic, be sure to check out the Arthritis site.

Please note that this email was initiated by Marcia, not by personnel at About or the Arthritis site. About does not monitor these emails, nor can we be responsible for any comments or contents forwarded by the sender. We hope you enjoy the recommended page and remind you that you can always access About directly at http://www.about.com.

Our Contact Information
249 West 17th Street
New York, NY, 10011

© 2005 About, Inc.

Well heres to the hunch and crunch gang. I have missed you all. I
have been pretty sick lately. Acquired an upper respitory infection.
So naturally Had to stop the Enbrel and MTX.In the meantime back in
the bat cave my hands are paying the price. Holy digits Batman..Yes
the fingers are getting lumpy,bumpy and hurt. Doesn't do my guitar
playing any good. Now I have an excuse why I play so badly.lol
Has anyone heard of Sicca? It is related to RA but tha is all I know.
I am trying to find it on the net but to no avail.
The High today was a nice 90 degrees and at 9:09 pm it
is 74 degrees . But it is still extremely warm in the house. I love AZ
THE SUN IS JUST A RAY AWAY
DREAMS COME AND THEY GO
BUT THE SUN IS JUST
A RAY AWAY ..
AS IS OUR HOPES.....
SKYE

I haven't been around in awhile. I have been real low in the energy
dept and really high in the Pain dept. Can someone recap the latest
news and goings on? I would appeciate it......SKye

Hello All,

heres a real good informitived link for your favorites ! answers some neat questions i've seen Marykin looking for i belive .

john
Note: forwarded message attached.

Got this on a Sjogren's list this morning.
Nina
alternatives to major cox-2 inhibitors for anti inflammatories
http://www.drnorthrup.com/eletter-current.php#2

I have had problems with Bakers cysts for years now. anyone else ever
have this problem??
Donna

Hi All,
Well my fever is finally over with so I can go back on the Humira. I missed one
dose
which means I went a month without it instead of 2 weeks, and sure enough my RA
came back in my hands, wrists and arms ( I feel the pain in my arms)! The pain
was
so bad last night, it could not be helped by a Persoset and a half, 2 Simply
Sleeps
and one Klonipin (sp?) ! I finally fell asleep and woke up feeling better. I
have not
had that kind of pain in almost a year and it is scary to think that it only
took one
missed dose of Humira to get me out of remission.
Elizabeth

Hang in there buddy, and let me hear from you!! ~Shelly
john no_way <kentuckycowboy1@...

THANKS HAROLD ,

YES i'M TRYING TO STAY AWAY FORM THE PRED. AS HE WANTED AND I'M AM OFF THIS WEEK PER HIM BUT AM DOING MY PT EXERCIES AND TAKING SHORT WALKS BUT EVEN THEY BRING ON UNBEARABLE PAIN WICH I HAVE TO ICE FOR ALL UP AND DOWN THE LEG ALLSO ??? DO YOU THINK THE WALKING IS STILL A GOOD IDEA ?

THANKS JOHN

Harold Van Tuyl <hvantuyl@...

You've been through so much that I don't know if I have anything to offer you. You know what Prednisone will do for you and also what it will do to you. Only you can decide whether the benefit outweighs the problems it causes. For OA I have heard that some people get relief for a while with injections of Synvisc or Hyalgen (not sure of spelling). Also pills of Glucosamine and Chondroitin are apparently helpful for some as long as they have some cartilege left for them to act on.

If you can manage a week or so to let your body recover that might help a lot. I hope the surgeon comes up with something to help you. God bless.

Hi All,
Reading the last couple digests. Hope everyone is having
a good day today.
From: "Nina Campbell" <ncampbell@...
\
Got this today in one of my freebie emails:

Hi all,
This is Steph in VA. I'm also on Remicade plus a bunch of other meds. I didn't have insurance for 3 months and received Remicade free for Centocor, the manufacturer. They were very helpful. They realize that you have to be pretty well off to pay for Remicade out of pocket. Visit www.remicade.com.

Take care,
Steph in VA

Hello Brenda,

This is Steph in VA. I have a FABULOUS rheumy. His name is Dr. John Lawson and he is in Washington, DC. I have been seeing him for 5 years. His contact info: 2021 K Street NW Suite 300, Washington, DC 20005. (202) 293-1470. I've referred several people to him and everyone thinks he's wonderful. Currently I am battling a small virus (fever, dizziness, chills, nausea, and cough). He wanted me to stay home from work all week to rest but it just isn't possible. So, he is making me call him every day with updates on my sypmtoms. Of course, I groaned about it but I really appreciate his attention. And, he told me if I didn't listen to him he would have my boyfriend take me to the hospital.

Take care,

Steph in VA

I have been dealing with almost unbearable knee pain in both knees since 1998, Its bad enough that I'm on the pain patches but they don't relieve the pain completely. I've not been able to get a definite diagnosis despite 3 different doctors except possibility of RA or another systemic disease. My finger joints have recently started swelling.
I'm only 48 but the fatigue and pain makes it impossible to live a normal life. I've been on this group for about a year so I know I'm not alone. I live near Nashville Tennessee and haven't been able to find help locally. I have a new insurance policy starting in July- and I am willing to go anywhere in the US that can help. I've even seen a surgeon about knee replacements but they said it wouldn't help.
Interesting fact is that the antibiotic- the z-pack or another one of those that you take once a day kills the pain- and is better than any drug I've ever taken LOL. After a couple doses I can even go to the store!! The oldies like amoxi or bactrim, tetracycline does not touch it. Has this happened to anyone else?
If anyone has had a success story, a fantastic doctor or clinic that isn't scared of a complicated patient I'm will to make my reservations. Feel free to email me if you don't want to tie up the list here.
Thank you for listening.

Brenda

THANKS HAROLD ,
YES i'M TRYING TO STAY AWAY FORM THE PRED. AS HE WANTED AND I'M AM OFF THIS WEEK PER HIM BUT AM DOING MY PT EXERCIES AND TAKING SHORT WALKS BUT EVEN THEY BRING ON UNBEARABLE PAIN WICH I HAVE TO ICE FOR ALL UP AND DOWN THE LEG ALLSO ??? DO YOU THINK THE WALKING IS STILL A GOOD IDEA ?
THANKS JOHN

Harold Van Tuyl <hvantuyl@...

You've been through so much that I don't know if I have anything to offer you. You know what Prednisone will do for you and also what it will do to you. Only you can decide whether the benefit outweighs the problems it causes. For OA I have heard that some people get relief for a while with injections of Synvisc or Hyalgen (not sure of spelling). Also pills of Glucosamine and Chondroitin are apparently helpful for some as long as they have some cartilege left for them to act on.

If you can manage a week or so to let your body recover that might help a lot. I hope the surgeon comes up with something to help you. God bless.

thrilled to be on board. Have no computer skills whatsoever and have
lost any typing ability I once had. Hey but for the flowers and
sunshine members at least I can HOLD the pencil to type right?! Don't
go ballistic on me flowers and sunshine people, I'm one of you also,I
just haven't punched the clock yet. "It takes 20yrs to build a
reputation,and five seconds to ruin it . Warren Buffet " I'm using
that on my profile as soon as I get off my ignorance to learn how to
post it.

yes Yellow ,
That was one of the suggestions for the lenght of time I've been fighten this dieases and the out come only is to get worse as we all know at this point !
john :o((
Zoom <zoom@...

John, I wish I had something to tell you to help.

I dont know about that surgery your doc talked about (sanding the bone) but do you mean he

wants to get you on disability?

Love and peace

Yellow

I have been dealing with almost unbearable knee pain in both knees since 1998, Its bad enough that I'm on the pain patches but they don't relieve the pain completely. I've not been able to get a definite diagnosis despite 3 different doctors except possibility of RA or another systemic disease. My finger joints have recently started swelling.

I'm only 48 but the fatigue and pain makes it impossible to live a normal life. I've been on this group for about a year so I know I'm not alone. I live near Nashville Tennessee and haven't been able to find help locally. I have a new insurance policy starting in July- and I am willing to go anywhere in the US that can help. I've even seen a surgeon about knee replacements but they said it wouldn't help.

Interesting fact is that the antibiotic- the z-pack or another one of those that you take once a day kills the pain- and is better than any drug I've ever taken LOL. After a couple doses I can even go to the store!! The oldies like amoxi or bactrim, tetracycline does not touch it. Has this happened to anyone else?

If anyone has had a success story, a fantastic doctor or clinic that isn't scared of a complicated patient I'm will to make my reservations. Feel free to email me if you don't want to tie up the list here.

Thank you for listening.

Brenda

Brenda3005@...

Hi Everyone,
My Name is Donna, I am 55 and have had RA for 15 years. I am on
prednisone, Plaqunil, celebrex, arava, and MTX..Thinking about
starting Remicade. my Insurance will cover that one.
I just wanted to say Hi and that I sure know what it is like to have
RA. and its not fun!!
Donna

Hi Elizabeth....

My mouth sores seemed to be on my inner/upper lip and tip or side of tongue. Mine were equal opportunity mouth sores. lol

I think I may up my folic acid and see if it helps.

I have noticed my mouth being dry and food tastes different. Bread seems to stick to my mouth and that's no fun.

Awww..r/a the gift that keeps on giving..

Paula

Hi all....

I was checking out the numbers beds also. They're pretty expensive..but I would love to have one. Also, a Craftmatic or similar. Any ideas on what is the best?

I think I'll buy one after I buy my lift recliner, motorized scooter, wheelchair, etc etc etc LOL

Paula

Hi all...

I am on voltaren and I know one of the side effects of this med is loss of appetitie. Does anyone else have a loss of appetite with their medications? I am now drinking Ensure to help supplement my meals.

Paula

Hi my name is Kathy and I am a newbie,

My internest diagnosed RA after a bunch of blood tests after he looked at my stiff swollen hands. PT has helped the stiffness and I see the RA for the first time tomorrow.

What do you think are the most important questions to ask?

What information should I most definitely obtain?

I am at the stage where the hand thing is painful, annoying and limiting some activities but I sure felt worse before my knee replacements for osteo (one place the d*mned ra can't go, hehe). I don't know what to expect.

When you feel function slipping, do you fight it (my usual method of dealing with physical disability) or are you better off coping in some other way.

I have my first grandchild coming in July and one way or another I WILL be able to pick that child up

Thanks

Kathy Schark
Hamden CT
kschark@...

Hi deborah..

I agree with you totally! I always feel better after a hot shower. I would love to relax in a tub but until I can get a tub lift..those days are over unless I want to plop myself down and yell for help after my bath.

I also rest when my body tells me to. I haven't had to take any happy pills but am getting close to asking about that.

I have resigned myself to the fact that eventually I will be wheelchair bound..I am 56 but like others, feel 86. My aunt has r/a and she is 87..and in a wheelchair. I pay particularly close attention to those Hoveround, Scooter Store, Invacare commercials now. "That looks like a good one and it comes in yellow too!"

I know the meds and feeling good is a trade-off but I say that if I have to live my life in pain and agony, do I want to do more years of that (?) ..I don't call that being alive and enjoying life. OR do I want to feel better now and enjoy my family, friends and life. The answer is NOW.

So, thank you for the good advice....it's exactly how I feel also.

Hugs..Paula

Hi Susan,
I might have missed it, but what meds are you on for your RA and whatever
else you may have, or are you on no meds?
Respectfully,
Elizabeth

http://arthritis.about.com/od/stemcell/

I just recently heard about the woman who was cured of her RA by using her siblings stem cells. Has anyone else heard of this and have you heard anything more about it? This is exciting news and I want to find out how to sign up, know what I mean?

Marykins

This is Walgreens:

Walgreens.com
25MG/VIAL - 4 FOR INJECTION $689.99

Nina

The cost of Enbrel is way off. It is about 700.dollars a shot. so I
get a month supply .That is 5600.oo $ a month!!!I believe it is so
coastly because the protein in the vial is from an animals
overies.Which one I forget.I think it was overies. My memory is bad.
Fibro Phog..................Skye

http://www.aier.org/drugcalc.html

The initial premium will be about $35 per month, or $420 per year.

· The initial deductible will be $250.

· Medicare will then pay 75 percent of drug costs from $251 to $2,250.

· There would be no Medicare coverage for drug costs between $2,250 and $5,100. This gap has been referred to as the donut hole.

· Once a beneficiary reaches $5,100 in total prescription drug costs, Medicare would pay 95% of the rest of their drug costs for that year.

Abbey, I was off for only 1 week. I had my gallbladder removed.But
there was no fever and no sign of infection so My rheumy gave me the
go ahead.I know this med works for me,because in a short time I have
had energy. I will see her Tuesday to see what she has planned...Skye

Here's some experience with medication from the flip side of the coin...

I've been on and off DMARDS for ten years. I don't honestly think I could remember every single one my pediatric rheumatologist tried me on, or for how long... he seemed to care more about immediately starting patients on the latest treatments as they became available, so that he could remain on the cutting edge of his field. Regardless of whether I'd only been trying the previous "latest treatment" for a couple months.

At various times I was on MTX oral, Cyclosporine, Imuran, MTX injectable, gold, Cytoxin, and Enbrel... the past couple of years (new doctor) I've also done Humira and Remicade.

I never responded well to any of the treatments. The only thing that legitimately helped was prednisone, and I've explained before with much bitterness what it ended up doing to me.

I had a shoulder replacement back in January, and because of that I had to halt the Remicade infusions for a while. And now... to be honest I don't have the will to start up again. I've been off MTX for several months and I don't think wild terriers could drag me back to that stuff. I feel 100 % better now that it's finally out of my system. I'm not so queasy nauseated all the time. I can eat food! Real food that tastes good and has salt and sugar and white flour and red meat. I don't have to struggle to force down that nasty Ensure crap to keep my weight in triple digits. I have double the energy and I'm not sleeping 12 hours a night and napping in the afternoons. I didn't realize what MTX had been doing to me until I stopped taking it. I'm not DYING anymore... because it's important to remember that MTX is chemotherapy and its purpose is to kill. KILL KILL KILL! If you're lucky it kills your disease more quickly than it kills you, so you feel better, but do
not forget that it is killing you at the same time.

I've been taking between 15 and 25mg of prednisone every day for the past ten years or longer. I began tapering it in February, and I've been at 8mg for months now. Sometimes I lose my strength and take more, and sometimes I grit my teeth and take less, but 8mg or thereabouts is my baseline "normal" dose now.

I had been taking Bextra for some time, but now I've switched to Mobic after COX-2s were entirely removed from the market. I don't notice much of a difference. Sometimes I forget my dose and I barely notice that. I may stop taking it entirely to see if it makes any difference in my daily pain, and I don't really think it will. That's one less medication!

My rheumatologist recently sent me to a pain management clinic where the doctors specialize in treatment of PAIN and not the diseases that cause it. I don't have to take Vicodin anymore. Now I have something called a Duragesic fentadyl patch -- it's similar to the patches used by people to quit smoking, only these are slow time-release narcotic patches instead of nicotine. I know logically that I'm receiving the same amount of pain medication I was before, but it somehow FEELS better to me because I don't have to take any pills or keep track of doses or refills or remember to bring medication with me when I leave the house. I just slap the patch on and completely forget about it.

So... in the past couple of months I've gone from MTX doses every week and Remicade infusions every month and 25mg prednisone and Bextra and several Vicodin every day... down to 8mg prednisone. That's it. I take my four little pills once at night and once in the morning and that's it. I feel a thousand times better and healthier and hungrier. I'm finally going to begin Tai Chi classes next week, something I've wanted to do for a long time but was never able to.

My little story just goes to show how different people are. For a lot of you, the heavy medication I used to take is a lifesaver, and it's the only thing that allows you to function and live your life without debilitating pain. But for me it was the CAUSE of a lot of my pain and misery, and I feel so much better now that I'm not poisoning my body with artificial toxins. I also know that for a lot of you, avoiding salt and sugar and meat and any other food that provides any kind of pleasure whatsoever has controlled your pain better than prednisone ever could. For me, my diet was actually a large contributor to my fatigue and nausea and gastrointestinal problems, and my constant battle to keep on enough weight to be healthy. I basically wasn't eating... the MTX made me sick all the time and I was keeping the Chinese restaurant in business by ordering quantities of tofu vegetable soup because it's the only thing that stayed down. A couple weeks after I quit the
chemotherapy drugs, I was able to eat lamb chops and French fries and fettucine alfredo again, and the sudden influx of nutrition in turn has made me feel much healthier and more energetic as I lose that "sickly pallor" of the Nausea Diet.

I don't know what makes one person different from another. Sometimes it makes me despair for us, because everyone is always trying to push the treatments (or lack thereof) that helped YOU, and those same things might make ME even sicker.

The only advice I can give everyone is to try everything you hear about, but at the same time, don't listen to people who say it always works or it never works. Beware of the "scientific studies" people send you to look at... if I'm convinced Shark Cartilage is a miracle cure, do you really think I will cite fair and unbiased studies that don't prove my agenda? Nope. I'm going to show you the 1 study out of 50,000 that was contracted by the Shark Hunters Association of Iceland, which somehow mysteriously PROVES that people taking cartilage tablets daily show great improvement. For every study someone sends me about how eating only Kleenex and fiberboard (the pressed kind; you should never eat the glued kind because there's a slight chance that might taste good) will halt the body's production of poisonous chemicals, I can cite a baker's dozen studies that show the benefits of a balanced diet including red meats and sugars.

But does that mean the shark cartilage never works? Does that mean the Kleenex diet never works? No. It means they don't always work, and they're not really any more likely to work than MTX or Remicade, two more common treatments that also don't always work. This disease is a crapshoot. If something worked for everyone -- if something worked for MOST people, or even HALF the people, rheumatoid arthritis wouldn't be the hell that it is. Chances are that new treatment that Sally Jane on this list swears gave her back her life... will only make you miserable. But you should try it anyway, because what if it works? You haven't lost anything by trying (unless it's the "NO" diet in which case you might be happier just shooting yourself) and you may have found something that will produce miracles for you where everything else failed.

I'll get off my soap box now.

love to all,

Jenni

the past few weeks i have been going down and down further down the hill on pain. i FINALLY had my appointment march 30th with my rhemy and things have changed. first off she took me off voltaren we looked everywhere for that damn medication and now i am off it. second she put me back on celebrex which is fine the bad risks on it are for the elderly with heart problems i may feel elderly but age wise im not so no worries on that. she also put me on enbrel. the downside to this med is the price, liek many of you know it. since i dont have perscription coverage its going to cost over $20,000 a year. well i visited the enbrel site and i am elgiable for medicare to cover it. they are sending me the application for it. :) YAY!

so today i'll take my 3rd shot i started last saturday and i take it on saturdays and wednesdays. and so far so good. i am still on mtx every monday. and all my other fun meds. i have seen a slight change. my knee isnt hurting me very much, nore are my wrists, sholders, neck and fingers. right now the only thing hurting is my elbows. its weird...

to answer some back questions people were talking about sores in the mouth from mtx i get them and it pisses me off. ARG!

ok off to enjoy a beautiful day here in michigan. :)

*gentle hugs*

~Dawn~

Susan, can I get your email or do you have Instant Messenger? I
would like to talk with you. Hope to here from you soon. Post it in my
e-mail........Skye

It has made me speak differently I need to speak more softer than I
did or I will wind up in pain. I cannot be jarred or bumped without it
making the nerve flare up. It is the trigeminal nerve. Runs from the
5th Cervical vertabrae to the Jaw.My Dr told me not to sing
anymore.and it has greatly affected that.So I need to sell my
music ,for I cannot any longer sing it myself.My mouth only opens far
enough to get my tongue through it.....Thanks for asking.No one has
ever asked that before...............(((((((((((susan)))))))))))))
........................................................Skye

That sounds real good Deborah,However it takes alot of energy .Whe I
take a shower that is about the only thing I can do all day. It takes
all my energy away......I am in bad shape.....Skye

Susan, Hello and good mornin. I thank you for the heads up on
acupunture, I was wondering ,Do you have any recipies that would be
liguid or close to it? As I mentioned earlier I am on a liquid
diet...But I am willing to try anything..........Skye

Susan I agree that some can be treated this way. What we put in our
bodies make the world of difference. I have RA,Fibromyalgia Myofascial
Pain and Trigeminal Neuritis. I have tried everything. My family is
really big into healthy eating,holistic medicine and so on..I guess I
was just needing to spout out.My pain is so overwhelming.I am going
for acupuncture later this month...............Skye

Idiotbeeboogers...I have to talk to you...I love the name..

G'Day my fellow pain pals..I look at it this way..The only thing that
helps...is opiates..lots of opiates..this may sound crass,however,it
is the truth.Those people on the cover of Arthritis Today..where did
they come from? I have never seen anyone who feels great if they have
RA.And especially if you are dx with something to go with it..like
Fibromyalgia.I have tried everything out there on the market.The only
thing that helps are strong opiates..I am thankful for the poppy
plant.Very thankful...................................Skye

I have had fast results with Enbrel...seemed that it worked better than Humira for me. I think the Enbrel worked within 2 weeks.

I really like Enbrel...

I did get mouth sores with both though. The pamphlet for Humira states that one side effect of the Humira can be oral thrush also.

Paula

From: SmartMedicine@...
Date: 04/07/05 12:58:40
Subject: Arthritis News: Pfizer Suspends Sales of Bextra

==================================================================
ARTHRITIS: SPECIAL NEWS ALERT
Medicinenet.com

I am a student doing a presentation on Rheumatoid Arthritis and I was
wondering if anyone would be willing to tell me how valuable this
message board is, and any how you feel about different types of
community support. Any info would be greatly appreciated.
PDT

well here goes. I'm 50yrs old bitter and crippled. Have had rheumatoid
for 13yrs and am almost wheelchair bound. At first the doctor used to
throw out sed #'s and after yrs I'd gotten tired of "well your sed
rate is down,you SHOULD feel better. Well I don't. Well maybe you
should try losing weight. huh? Excuuusse me but buddy I don't walk on
my fingers and they still bleepun hurt. Told you I'm bitter.but
working on it. After 16yrs of marriage 2mo after being diagnosed he
said see ya.My hous is the messiest of all.You have to let go,it hurts
when you see a recipe you used to love preparing. Now just watching
the bleeping tv thatHumira commercial that says "What are you gonna do
wait until you can't turn on the light?" Does it work or are they just
insulting guines pigs again.don't hate me

I have been running a low-grade fever since March 25th and missed my
March 28th dose of Humira. Today, I experienced horrible stress. One of my
best friend's ex-husband, who she has a child with, had been missing and
today she found out he had died from a heroin overdose. He had been a
"John Doe in the morgue for two weeks! She was hysterical in my arms. I
tried not to cry so I could be strong for her. A couple of hours later out of
nowhere I feel a bad pain in my right arm, then my left starts to kick in. I am
so worried that between not being able to take my medicine and helping her
through this that my RA will come back.
Thanks for reading,
Elizabeth

Has anyone had any fast results with enbrel? I am sure I have seen
posts about this but have not been able to find them.
Annette

I haven't had time to read all the messages asking about mouth sores, but I
can tell you they're a common side effect of MTX. Common enough that if you
tell your dentist you're on MTX he'll recognize the name and know about the
effects of it (if he doesn't, you need a new dentist). I've never heard of
Enbrel or Humira causing mouth sores when used by themselves... it's just
that most people taking either of those two are also on MTX. To my
knowledge mouth sores aren't commonly caused by Enbrel or Humira alone. I'm
sure it can happen, but it isn't likely.
Jenni

I went to my PC yesterday, the Mobic wasn't working so she put me on Relafen.
Does anyone have anything to say about this prescription? It is for 750 mg.
Tomorrow I go to see a new orthopedic doctor, for RA, trigger finger and carpal
tunnel...gee is there anything I missed?
Kathy in NH

Hey Grandpa Van,
How's life? It's good to see some posts from you.

Take care,
Steph in VA

P.S. It is a beautiful day here in Virginia! It's 83 degrees with a light breeze. Yeah, the sun is back!!!!!

Hi Jeannie,
This is Steph in VA, adding my 2 cents on your post. Welcome to the group. I'm sorry for your reasons for joining us, especially being a nurse and single mom.

I'm 27 and was diagnosed in 1999 at the age of 22 while in my last semester in college. I tried a bunch of meds before finding my current cocktail: prednisone, Azulfidine EN (brand for Sulfasazine), Ibuprofen, Methotrexate, Folic Acid, generic for Flexerall, and Remicade. I have also tried Celebrex, Vioxx, Enbrel, and Naproxyn.
Where in NYS are you? I attended college at Mansfield University in north central PA (about 45 minutes south from Elmira, NY). I was diagnosed by a WONDERFUL rheumy at my college's teaching hospital in Sayre, PA (he also had an office in Corning, NY). He is now at a Geisinger hospital in PA. I can get you the contact info if you are unhappy with the rheumy you see next week.

I know it's probably been mentioned, but the biologics aren't always as successful without methotrexate. Of course, weighing the risks/benefits/side effects of the available meds is probably one of the harder decisions we have to make living with arthritis.

I love the combination I'm on, although I do hope to be off prednisone by the end of the year or early 2006.

Take care,

Steph in VA

Hi Maggie,
How long have you been on Prednisone? I've been on it for 5 years. Under 10mg/day, I went down only 1 mg at a time (ie 7 one day and 6 the next day). My rheumy says then there is less of a risk of withdrawal. I've been on 4mg/day for 6 months. Next month I'm starting 3.5mg/day then 4 mg/day for a month. For under 5 my rheumy says .5mg increments is best.

Take care,
Steph in VA

I went last monday to the doctor and he injected my right shoulder it
only lasted a couple of days and I am expering sharp pains again
should I call the doctor and tell him or should I wait a while I am in
a lot of pain in the morning it wakes me up at night hurting so much
any in put would be nice or is there any thing I can do Thanks Sherrie

Hi all,
Just feeling a bit low today as I am flaring badly - this time in my
back. I have not really experienced RA pain in my back before - but
it is causing pain into my chest too, which is horrid. I guess I just
want some sympathy and words of encouragement from those who truly
understand.
Suzie

I was wondering where in the mouth the sores are that some of the people
here experience on Enbrel and Humira?
Thanks,
Elizabeth

First of all I would like to say Hello to those that just joined this
group and are afraid and not knowing what your furture holds. Every
Body is different what works well on one may not on another. They have
made some progres in these meds I am on Mtx and Enbrel Which seem to
be giving me soom energy. And for those talking about MTX shortage..I
live in Tucson and have had no problems getting mine.
Thank you to those that submitted their experiences about their
fingers . It made me rethink..Yes I maynot be able to play today but
tomorrow maybe differnet. That is how this disease seems to go. It
spends some time with your elbows then goes to your ankels,knees then
goes on a vacation to the fingers.....There is ALWAYS
HOPE!!!!....................................................Skye

Hi Skye and All,
I don't play any instrument Skye but know folks who do.
I put a few words into a search engine and came up with this
site. Maybe it will help. Hope you have a good day and enjoy
that Tuscon sunshine! Here's the site:
http://www.folkofthewood.com/page2469.htm
Not sure it will help Skye but I did find other sites by putting
the words 'rheumatoid' and 'guitar' in a search engine. There
are other folks out there and maybe communicating with them
will help. Hope this helps.
Best Wishes,
Dodie
Northwest PA

Hi Beth,

Thanks for your insight. I never had a problem with injecting myself. I had taken Enbrel first and got mouth sores and then rheumy switched me to Humira. When I injected the Humira it would sting. Don't know why but it did. I liked the Enbrel better...thought it worked better for me. But both have given me mouth sores so.... I will wait and see what is next.

Thanks again,
Paula

Hi everyone -
Does anyone on the board have anemia of chronic disease? I was
diagnosed a few years ago after RA and this common in RA patients. It
went away when my rheumy put me on injectable methotrexate and folic
acid. Now, since I can't get the injectable metho it's back. The
treatment is to treat the underlying disease, in this case the RA is
not being adequately controlled--inflammation wise. It is my
understanding that iron supplements/vitamins do not help this type of
anemia.
If anyone has any information on how they can keep this anemia
condition under control, please let me know. My rheumy is running out
of options with me. Prednisone + Plaquenil + Bextra + Humira.
Remicade is out of the question since I can't take metho unless
injected due to stomach problems (caused by RA meds.) Ibuprofens are
out as well--bad allergic reactions.

First of all, sorry for the cross-posting, but I would like as much input as possible.

Second, I'll introduce myself, and give some background since I am an active lurker, lol. I am Diane, 38 yr old SAHM to 3 girls, in Bellmawr New Jersey. I have had intermittent pain in various joints for as long as I can remember - as a child, my mother was always told it was "growing pains" Around the end of 2002, the pain in my shoulders and upper back became much worse, so I mentioned it to my then PCP. He wrote it off as stress, and did nothing. I changed PCP's in June of 2003 - mentioned the pain to the new doc - she sent me for lab work - CBC, Sed rate, RF, ANA, C-Reactive Protein, etc. Sed and C-Reactive Protein were elevated, but not outrageous. Dr started me on ibuprofen and prednisone. Both gave some relief. Two months later, pain was all over, and bad enough to send me to the ER, where they gave me a shot of Demerol. PCP repeated all labs, and based on increased levels and increasing pain in my shoulders, neck, upper back, and feet, she diagnosed
rheumatoid arthritis. I also saw a podiatrist around that time that confirmed arthritis in my feet along with bone spurs and plantar fasciitis in both feet. Over the past 2 yrs, my pain and fatigue have continued to increase, and meds have been changed at times hoping to find something that works. I finally asked my PCP to send me to a rheumatologist.

Now here's where I'd like some opinions. - I saw the rheumy this past month - 2 visits 3 weeks apart. During the first visit, he reviewed recent lab work, asked about my pain, and examined me. Based on the exam and lab work (which was done while on prednisone), he said he was not sure that RA was a correct diagnosis, nor did he feel that I had fibromyalgia. He sent me for a nuclear bone scan and more blood tests. At my second visit, he told me that the bone scan only showed some degeneration of the elbows, and changes in the lower jaw. The blood work ruled out Lyme disease, Lupus, and any type of muscle wasting disease process. Basically, he said he did not know what was wrong, but did not want to diagnose RA because according to him I don't meet the criteria, and some of my pain is intermittent. My RF is negative, but my sed rate and C-reactive protein continue to be elevated, but not enough. He simply diagnosed polyarthralgia (pain in more than one joint), did not
change or add any meds, and told me to have my PCP monitor blood tests periodically. He would see me again if needed. I received a copy of the rheumy's report, and in it he states - shoulder crepitus and soreness, tennis elbow, early osteoarthritic changes in the finger joints, bursitis in the hips - especially the right, and an uncomfortable feeling with palpation in the occipital area and both second ribs, but not true fibromyalgia tender points.

I am stiff for at least 2 hours when I first wake up in the morning, I have constant pain in my back and shoulders which is worse after activity, pain in both feet daily, and pain in my knees and hands that comes and goes depending on my activity level. I can't sit for more than 20 minutes or so without pain and stiffness, but I can't stand for too long either due to the pain in my feet. My PCP is great, and is really trying to help my pain. Should I ask her to send me to a different rheumy, or to someone else - maybe an orthopedist? I feel like I'm at the end of my rope, and my body is falling apart on me. What should I do?

Thanks in advance for any input, and thanks for reading,

Diane - in NJ

Hi, Everyone....I am an RN in NYS, recently diagnosed w/ RA. I've had
OA for quite some time and had L 4-5 removed a few years ago with
great success. I've been in a lot of pain lately. My first appt w/ a
Rheum is 4/12. At this point I want it treated aggressively. I'm
willing to take Enbrel and Sulfasalazine, but not prednisone or MTX.
Any thoughts or comments on any of these meds would be appreciated.
I'm 41 now and raising my 8 year-old completely on my own...I would
like to keep working for a long time...as long as possible. Smiles to
all, Jeannie.

Does anyone have any experience with problems in what is so glamorously
called the hindfoot? I read that this is one of the areas that is very
difficult to manage from a treatment point of view and it seems an area
of mine is badly damaged.
Sometimes you can feel like you're doing OK but the Xrays say you're
obviously not. It's very discouraging.
Annette

Well I knew it would hit me hard sooner or later.Just didn't expect
sooner this soon.I awake and naturally the hands move,but it isn't
natural to awake and yell cuz your fingers wont' bend and they are
painful.I am not angry,but I am at a loss. I depend on my guitar. It
carries me through the bad days and gives me a hollar on the good
days. I have been playing ever since I first held one at 6 years of
age. I am lost. I don't know what to do. I am s