Was diagnosed last August with RA, after thinking that I had Lyme
disease for the previous eight months. Am interested in talking to
others taking Methotrexate via weekly injections. Is it helping? What
are some of your reactions to this drug, etc. Thanks, V.Lam
I'm a 75 year old man diagnosed with RA in December 2001. I'm now
on 15 mg Methotrexate weekly, Remicade 6 mg/kg, 0.1 mg Synthroid,
and decreasing Prednisone (currently 1.5 mg daily), along with a
bunch of vitamins and some other medications to counter the effects
of the meds listed above. I function reasonably well but have
trouble getting up from sitting on the floor and walking down
stairs. I have some finger stiffness and joint pain but I'd rather
tolerate that than risk side effects of more medications. I also
post fairly regularly as Grandpavan on the Arthritis Insight message
board for RA.
Hi Jan,
Have you tried the new medication named Humira? It is FDA approved for both MS and RA.
Take care,
Stephanie in VA
Hello All,
Lately there have been articles about the connection between heart
disease and RA. I had a premonition about that when I developed both
in the same year. It has to do with the inflammation factors. RA
community, how many of you have heart disease and RA? Any other
comments? I have been told that I had a silent heart attack in the
past. I am now age 59. I have a 100% blocked right artery and have
had an angioplasty on another artery that feeds my collateral
vessels. I have angina on few occasions. For RA, I take prednisone
and MX.
Thanks for whatever you all can offer.
Warm regards, Maxine
Hi everyone,
I have been in NYC since 3/3 because my godfather passed away. I recently returned to VA so I have quite a few emails to reply to from this group.
Take care,
Stephanie
Hi Sarah,
I understand what you are going through. I was diagnosed with arthritis (Reactive arthritis specifically) 3 years ago when I was 22 years old and in my last semester at college.
Everyone's body reacts differently to arthritis and to the medications. When I was first on prednisone I was on 40 mg/day for a week and was gradually brought down to 10 mg/day. The biggest side effects I have from Prednisone are weight gain, moodiness and nightmares. Since Prednisone chemically changes your body, I find myself craving things I've never eaten and being repulsed by food I've always liked. I'm not sure if the higher dose has something to do with that or long term use of the med in general.
As for methotrexate, you may experience nausea and/or diarrhea the first few weeks. That usually subsides. If it doesn't you can switch to the injection and those problems usually stop.
Take care,
Stephanie in VA
Hello everyone. I'm glad I found this place. I was diagnosed with
RA in 99, but it has only gotten worse in the past couple of months.
Most of the time I find myself in such despair and pain with no one
to talk to about it. A couple of weeks ago my doctor put me on
methotrexate, but it doesn't seem to be helping. I'm also in the
process of looking for another doctor, cause I'm not feeling
comfortable with the one I have. I look forward to chatting and
reading everyone's posts.
Toni
I think I have become a Remicade Junkie. This is the third time in
18 months that my infusion date has been boggled by my Rhemy's
office staff and my PPO. Authorization delay they say, each
ascribing the delay to the other. However, the delay has given me
the opportunity to discover just how addicted I have become to
Remicade. A few days prior to my infusion date, the efficacy of
Remicade begins to subside and the RA pain and discomfort returns. I
need a fix. It has now been 4 days since my scheduled infusion, the
longest I have gone past my scheduled date, and I feel I am on the
verge of a flare. The pain has really gotten worse and even
depression has set in. I find myself in a constant state of anxiety,
unable to concentrate, and short tempered. Oh yes and playing old
Velvet Underground tapes too! I really "need" that infusion! I know
everthing will be all right when the fluid begins to flow into my
veins. Yes, I Remicade Junkie ($7,438 a fix) at the mercy of forms,
authorizations, and the Company. I know I am not alone!
Regards,
Bill
I'm new here and just thought I would say hi. If anyone wants to
chat send me an email.
Thanks,
Kick
***Experience the Anti-Aging Break Through***
OVER 10 MILLION HAPPY CUSTOMERS
A clean slate, a fresh start... and no
better time than right here, right now to make 2003,
The Year for a positive change in your life and well being.
For less than the price of going out to dinner with your friends,
you can be well on your way doing just that.
GHR
Growth Hormone Releaser,
Doctor Endorsed and published in the
New England Journal of Medicine.
Wouldn't you like to "Grow Younger?"
::::: NutriMeds introduces GHR Renew U :::::
::::: 100% All Natural Fountain of Youth is Here! :::::
::::: Clinically Tested and Proven All Natural Anti-Aging Formula :::::
::::: Works Three Times Faster than any other Anti-Aging Product on the Market :::::
::::: Incredible New Anti-Aging Program -- 90-day, 100% Satisfaction Guarantee :::::
[!NO WAY!] [!FLIP IT!] [!BACK LASH!] [!PHONY BONE!] [!TRIPPEN DICKULAR!] [!SHAZ BOT!] [!BLACH WASH!]
Here's a few reasons
* FREE 30 day supply
* Reduce body fat and build lean muscle Without Exercise.
* Enhance sexual performance
* Lower blood pressure and improve cholesterol profile
* Improve sleep, vision and memory
* Increase energy and cardiac output
* Remove wrinkles and cellulite
* Restore hair color and growth
* Reduce stress levels
* Strengthen the immune system
* Improve quality of sleep
* Improve Vital Organ Cell regeneration
* Turn back your body's biological time clock 10 years in 6 months
* Safe, and 100% All Natural
Call toll free and place an order now at:
1-800-9556-GHR
1-800-955-6447
Order Online at: GHR Renew-U
We thank you for your time in reading this news.
Enjoy Your New Year.
Please know that we do not want to send you information regarding our special
offers if you do not wish to receive it. If you would no longer like us to contact
you or you feel that you have received this email in error, you may
click here to unsubscribe
Hi all I am just starting my life with RA. I just went ot my
rumatoligest ( by the way I can't spell very well) for the first time
today and she confirmed to me that I have RA. I was in just a bit of
denile. I am 32 and have a new baby. I only found out because I
wanted to get my knee fixed so i could play with my daughter when she
got older. I was on prednisone 10mg for 15 days and it did nothing
for me. I accutally had more swelling than normal. I started on
celebrex and ultracet tonight. I was wondering how long it took for
the celebrex to start working? My doctor wants to start me on
Methotrexate or Enbrel when i go back in six weeks. She wants me to
help her to determine which one. I have the pamplets but wonder if
anyone has personal experance to help me. Thanks Jeff
Hello,
My name is Teri and I am the mother of a 5 yr. old daughter with
Juvenile Rheumatoid Arthritis. I just wanted to make people aware of
an event that is occurring in my area:
Utica NY Jazzmatazz 2003 -A Benefit for the Arthritis Foundation
Friday March 28th
Harts Hill Inn
Whitesboro
7:30pm - 10:30pm
$40 per person or 2 for $75
...a Wine Tasting
What to expect:
Sample Hundreds of Wines
Saranac Beer
Live Jazz Music featuring "JAZZ GARDEN"
Silent Auction & Raffle
Gourmet Food Stations
"Business Smart" Attire
Private Champagne Tasting for our $500 and over sponsors (6:30pm-
7:30pm)
For Reservations Call
315-455-8553 Or 1-800-870-1771
advance reservations only
Okay if your reading this its a pretty goood chance that u have
rheumatiod arthritis around nov of last year I had blood work done by
my doctor and all of the symptons of this disease it came back
elevated and he arranged for me to see a rheumatologist this disease
is expensive and depressive at times I really dont want to go on
living feeling the pain everyday I went through the club reading
messages posted from others suffering with the disease I take several
medications as well I went from predisone to methylpredisone and
methotrexate and difunisal the things is does this disease get any
better i have been seeing a rheumatologist for a few months now he
keeps telling me to give the medication time to get in my body
somedays I feel great and others I;m so stiff I can hardly move the
days that I rest seem to be better days but If I miss one medication
for that day or morning its like I never started the medication at
all this is scarry to me it seems as if I'm living to take this
medication and that the medicine is what controls how I feel but its
not really stopping the disease I know theres no cure, I guess Im
asking is , is there anyone out there that can relate to this and
give me a better insight to it??? Does it get better if medication is
doing what its suppose to do?? Are there any members in this group
never experience any pain do to medication??? Thomas
Anybody here ever been on Plaquenil for their RA? I was just switched
from Sulfasalazine to it and am concerned about how long it takes for
this med. to start working. Any help appreciated.
Brad
Hey there,
my name is Angela.
i am 34 years old and i have R.A.
I have had it sence i was 12 years old.
has anyone ever had others tell you that you where lazy but your not..
i have had others tell me i was lazy and they dont care what my doctors
think
i know i am not lazy but it hurts when others say you are when they dont
know how you feel living with Arthristis.
I Know that i have church family that know me and understands me puls my
family that has been through alot with me knows i am not lazy...i dont
give up sometimes when friends think i am lazy i just get so depressed i
go see my doctor for my arthristis this thursday after noon...
i think that i will have to talk to him about what to do about my nevers
and being so stress out over things...if you like you all may email me
anytime...
angela
I have ms and was diagnosd with RA
in Oct 2002. I usally deeal with
life ok, but Im in a lot of pain and
get depressed at times. I had
steroid injections in my back, hips
and feet in Nov 2002 but they are
wearing off now so im seeing the
rhuematologist on tues. looking
forward to getting to know you
all.(((HUGS))) Kim xx
Hi to all, I'm new to this group.
I've been on remicade now for about 2yrs. In the beginning the
effects were pretty good, althought, now I have found that the
benifits I once had are decreasing. I would like to hear from other
Remicade patients, and if you are experiencing the same.
Thank You
Loretta
I posted the other day introducing
myself but cannot see it posted
here. I will try again. Im 43
diagnosed with MS in 1990 and
retired as a district nurse in
1995.I was diagnosed with R/A in Oct
last year. I had steroid injections
in Dec in my feet,hips, and back.
They are wearing off and im in a lot
of pain. I see the rheumatolgist on
tues again for a review. I hope i
can get to know you all here and how
you all cope on a daily basis with
the pain. (((HUGS))) love from Kim
xxx
Hi all. I was just diagnosed with RA and am in that stage where I'm
a little scared about what's going to happen. I'm glad I found this
group. I am 28 and this all started with a cold that wouldn't go
away for about three months and then wandering joint pain that
eventually settled in permanently into several joints. I am on
prednisone and an NSAID and start methotrexate tomorrow. I have a
couple questions... I am on prednisone at 10mg a day and will stay
on it for about six more weeks (8 total). Has anyone had bad side
effects with that low of a dose for that amount of time? And my
other question is... I also have a minor heart condition (SVT- a
form of tachycardia) and wonder if anyone out there has something
similar or has heard of any type of connection? Thank you so much.
Sarah
I don't mean to bore anyone, but this is causing me anxiety....would
it be ok to ask a few questions?'
also my Mother, who is now deceased, had RA, and my sister has fibro
is it ok to ask questions here?
I don't have insurance and the dr bill was extremly high, they did
want to send me to Rhuematologist; but she wanted $400 just to see
me; and at least $800 for "beginning tests"
please let me know....I think I do have it tho, but would be grateful
for some clarity and feedback
gentle hugs
mem
Hello to the Group!
I have RA for 7 yrs now. It hit me quite quickly and hard. All my
joints are affected, from my jaw to my toes an everything in between.
I have been taking the combination of Remicade along with Arava,
Prednisone and naproxen for the past 2yrs. I take 5 vials, I'm not
sure if it's 50mgs or 500mgs (don't remember how they grade it). I
used to get it every 8weeks now it's 6 weeks, and because the effects
of the Remicade don't seem to work as well or last as long as it used
to. Now my next infusion will be 6 vials.
Is any one receiving Remicade and had a lessing of good effects over
a period of time? In the begining the effects were pretty good, I had
a lot less pain and stiffness. However that has changed. It seems
that the body is learning to compensate and defeat the Remicade. Each
time I have an infusion it works less and dosen't last as long. If
you are being treated with Remicade I would like to hear how it is
working for you.
Thanks
Loretta
I have heard a lot about Glucosamine and Chondroitin, but wondered if
any of you had tried supplements and how much they helped?
Thanks,
Marty
I found this really great site http://www.presidentialprayerteam.org/index.htm
When you scroll to the middle of the page there is a place to click on to adopt a member of the military service for prayer.
There is also a place to register a family member or friend that is in the military.
Check out the site. They need all the prayer they can get especially if we do go to war.
God Bless, Barbara
Hi all,
My g/friend's been dealing with RA for a couple of years and has been
using a variety of herbal remedies, which have provided some relief.
She recently became aware of Sam-E through some acquaintances who
have used it to get some relief from fibromyalgia -- does anyone have
any experience getting relief from RA with this? And if so, do you
have any suggestions about which brands are most effective? Thanks
in advance for any first-hand information or useful web resources.
- Cats do what they want.
- They rarely listen to you.
- They are totally unpredictable.
- When you want to play, they want to be alone.
- When you want to be alone, they want to play.
- They expect you to cater to their every whim.
- They are moody.
- They leave hair everywhere.
- They drive you nuts and cost an arm and a leg.
Conclusion: They are tiny women in fur coats.
Hi everyone,
This is Stephanie in Virginia (2 hours west of DC). We got pummeled by the snow! The "official" tally was 32.5 inches. I'm lucky that I rent because I didn't have to shovel. Also, I live across the street from the county hospital so my street was one of the first to be plowed. Yesterday was my first day back at work since last Friday!
Take care,
Stephanie
Can any of you imagine what it would be like if you discovered a way to
achieve a remission of all your arthritic symptoms by simply avoiding foods,
beverages, and other items containing a trace element known to cause
arthritis?
By the messages posted to the group I get the impression that many of
you are very sensitive and caring people who will go out of your way to
help others. I'm wondering if any of you would be willing to go out of your
way to help yourself. Are you certain fluoride isn't playing a role in your
flares? Do you understand that fluoridated water is just a minor fraction of
the typical total daily intake of fluoride. Times have changed since the
1940s. Most of your exposure to fluoride comes from pesticide residues,
dental products, and prescription drugs. Typical daily dosage is more than
enough to cause severe forms of arthritis, as well as gastrointestinal
problems, thyroid disorders, and severe muscle pain (fibromyalgia).
Consider the following excerpts from the Faculty of Medicine and Dentistry
at The University of Western Ontario, and use the URL to visit the site.
Unless you know the cause of your symptoms, please consider the
implications. The American public has been exposed to propaganda about
fluoride for decades -- with very good reasons that have absolutely
nothing to do with dental health.
Case Study For The 4th Year Course In Ecosystem Health:
What is Fluorosis?
In the broadest sense, the term "Fluorosis" describes a state of toxicity of
the trace element, Fluorine (commonly referred to in its ionic state as
Fluoride) within an organism. Fluorosis is not limited to humans, and can
affect any aspect of the ecosystem.
Humans appear to vary considerably with respect to their susceptibility to
Fluorosis. As a general guideline, prolonged total Fluoride intake exceeding
1.0 mg/day can produce clinical signs of Fluorosis in adults.
Skeletal Fluorosis: involves abnormal mineralization of bone and soft tissues
and/or the distruption of normal activity of the osteocytes. For this reason,
Skeletal Fluorosis often mimics "generic" osteoarthritis and/or osteoporosis
in relatively young adults.
Systemic Fluorosis: due to the chemical nature of Fluoride and its action(s)
within mammalian systems which are not limited to teeth and bone, Fluoride
toxicity may potentially be linked to every major multiple cause ailment of
the 20th century from cancer to Attention Deficit Disorder.
http://www.med.uwo.ca/ecosystemhealth/education/casestudies/fluorosis
med.htm
/_/_/_/_/_/_/_/_/_/_/_/_/_/_/_/_/_/_/_/_/_/_/_/_/_/_/_/_/_/
Darlene Sherrell
Woburn Post Office
St. George's, GRENADA
West Indies
1-473-443-3713
http://www.rvi.net/~fluoride
Hi All, I have been thinking about you. These are trying times for
those of us with RA. I live in Silver Spring, MD where we got 25
inches. Wow!! I cannot shovel. I brushed the snow off our cars.
At least I feel productive. I snowshoed up and down our streets for
exercise. That felt good. I ache a bit today, but the enjoyment of
being in the cold snow, in my cozy warm clothing, really felt great.
I'd love to hear your stories. Blessings, Maxine
Hello Everyone,
Although I have been lurking (forgive the expression) in this group
for some time, I have not really introduced myself so I think the
time has come. I am 39, married, and have a 2 year old daughter. I
have had RA since I was 16 and, like many of you, have been through
a plethora of meds. Currently, I am taking Mtx, Remicade,
Prednisone, Plaquanil, Diclofenac, and Folic acid. Although my
current regiment has worked wonders, I recently had a flare in my
knee and had to have it injected. I have not had any surgeries yet
but with no space left in my wrists, knee, and elbows and the
gradual loss of motion in the affected joints, it is only a matter
of time.
In 1999 I was taking Enbrel but had to go off Mtx in order for my
wife and I to conceive. The efficacy of Enbrel diminishes when not
used with Mtx and soon I had a flare of a lifetime. Determined, my
wife and I finally conceived in Feb of 2000 only to have a
miscarriage in the 8th week. Unfettered, with tried again 3 months
later and conceived again. Andrea was born in Feb. of 2001.
Raising a daughter has not been easy with RA, but we knew I would
have challenges other fathers do not. She is indeed a blessing!
Recently, I found encouragment in reading Amye Leong's book "Get a
Grip". From reading Amye's book and from reading many posts on this
website, men and women appear to share many of the same challenges
with this disease. However, I believe there are also some striking
differences as well (another post).
Getting a "grip" on this disease is just as much about "attitude" as
medical treatment. No longer lurking!
William Wolff
Hi,
Personally, cold weather (and dreary, rainy weather for several days in a row) affect me greatly. I was diagnosed at the age of 22 (3 years ago) and this winter has been the worst since I was diagnosed. We have had freezing rain or snow at least once a week since the week after Thanksgiving. I can't take it anymore! I can't wait for summer.
I agree that you shouldn't move because of your arthritis. I'm from NYC but moved to Virginia for a job in June 2000. My advice is find a great rheumatologist and consider one of the TNF inhibitors (Enbrel, Remicade, Humira or Kineret). They are most effective if you start them early. Remicade is my wonder drug. It was approved in 1999 and I started it in may 2000. Be aggressive in your treatment. Personally, I don't let the potential side effects of the meds stop me from taking them but it's a choice everyone has to make.
Take care,
Steph
P.S. You live in Denver, right? I was there in 2001 for a conference. It's a beautiful city.
Hi Diana,
I was diagnosed with Reactive Arthritis (RAA) in November 1999. I was 22 years old and in my last semester at college so I completely understand your email.
When my symptoms started, doctors had reasonable theories: jaw pain -- TMJ or my wisdom teeth; arm/wrist pain -- Carpal Tunnel b/c I was an English major and typed a lot of papers; leg pain: a blood clot caused by birth control pills or muscle spasms b/c I taught dance and aerobics.
My symptoms are all on my left, which is my dominant side. After 2 weeks I couldn't feed or dress myself. I couldn't even sign my name at the hospital. My college was on 175 acres in the mountains of PA and walking was nearly impossible. I was lucky that my college was small and people knew me (and knew I wasn't faking my problems even if I didn't have a diagnosis). The Chief of Campus Police got my schedule and had campus cops drive me to my classes. I was annoyed then but I'm really grateful now!
Currently, I manage my arthritis with lots of meds: Azulfidine EN, Prednisone, Ibuprofen, Methotrexate, Folic Acid and Remicade.
Take care,
Stephanie in VA
Hello,
For those of you that have MS and RA ... have you tried Humira? It is a shot given every other week. It was recently released and it is the first medication that can be used for RA, MS and Crohn's disease. Visit www.humira.com for more information.
Take care,
Steph
Hi Maxine
I have just read your email, I too have just had my dog operated on for Mast Cell Cancer (unfortuately my dogs is grade 3 :o( ) But she is doing well so far she has a great oncologist surgeon whom I have every faith in. Because she has thrown up a few lumps since the first one appeared she has had to have further surgery to remove the worrying ones, and the vet has put her on prednisone and the lumps that were not removed by surgery have shrunk down so small it is amazing. Until I had read your post I did not realise that you have to taper this down so will have to talk to the vet about this. In herself Ebony is so well and happy and that is the main thing. Two years ago April my other dog developed bone cancer and had to have her leg and pelvis amputated to stop the pain, they said she would have about 6 months but it would be pain free and happy, I still have her nearly two years on she is bounding around like a puppy still, runs like a lunatic, even though she is
10 now. All I really wanted to say is that I can appreciate the stress you are under and can completely understand your anxiety, but there can be light at the end of the tunnel, I have been extremely lucky with bracken and now although things again do not look good am hoping to be Lucky with Ebony too.
Take care
Ruth
L+
Hello All,
I would love some clever, helpful ways to enjoy being with children.
How does one with RA pick up young children from a crib, from a car
seat, from a high chair.......and anything else you can think of? How
can we carry them? How can we play with them at their level? How do
we protect our back, neck, legs, etc? Thank you so much.
Maxine
Hello Everyone,
It's been a while since I've written. I hope all of you are
doing well and have joy in your life. I was busy caring for my dog
and cat. I found another cancerous lump on my beloved dog, Abbey,
who just had a leg amputated in November. After waiting a hellish
week after her excision and biopsy, I got GREAT news that it was a
Grade 1 which means that there is no need for follow up treatment.
The scariest thing is that Mast Cell Tumors in dogs can come back.
The anxiety is excruciating when I think about it. I have some good
diversions, so I am OK for now. I am also nursing my cat who has
early stage renal failure. I have been so stressed out from this
unbelievable life I am living. It has been one thing
after the other for a year since RA kicked in big time!!!!
HERE'S MY QUESTION: I am continuing to slowly taper my
prednisone, from 20mg to 5mg. I started the 20 mg in October. Since I
have become more active, my back, hips and legs really hurt. This is
not where I have had RA pain before. I am using muscles I haven't
used in a very long time. How much of the pain can I attribute to the
prednisone tapering process? Is the pain worse because I am on this
lower dose? I am aiming for 2.5mg yet my rheumy said that I will need
to decide what works best. He also said that he would like to
increase the methotrexate once we see where the prednisone tapering
takes me. Please let me hear about your experiences with this
process.
Thank you so much, as always. Blessings, Maxine
Tim,
I feel for you. I am 28 now and was diagnosed with RA at age 20. RA
is a progressive disease but can be controlled with different
medications. Find a good doctor and discuss all your options.
I do not believe that having RA should cause you to move away from
where you are familiar. You can control your disease no matter where
you live. There is some correlation between warm temperature
and "good days" but I have found I can feel great of rainy, snowy
days and I can feel terrible on beautiful sunny days. So, I think
think having RA doesn't constitutes moving. You'll have good days
and bad days regardless of the climate.
I can see that having a job that requires your hands would be
difficult. If you live in the US, talk to someone who knows about
Social Security, you may be elligible if you cannot work like you
used to because of this disease. I, myself, was a plumber (an
apprentice anyway) when I was diagnosed. I was in college working as
a plumber and had to quit. I changed majors to mathematics and then
went to get a degree in education. Having RA changed my occupation
plans but for the better. I planned on working in plumbing and maybe
working in a plumbing office doing accounting. I realized that I
wouldn't be able to do that so I got my education degree and became
a teacher.
If you can, you may want to think about getting a desk job but you
may not have to. There are many new treatments out there that are
miracle drugs. You may find that these wonder drug allow you to do
everything you once could do. I depends on the severity of the
disease and how your body responds to these medications.
I wish you well and if you have any questions, concerns, complaints,
share them with us.
-Diana
does anyone know anything about this drug? i will be starting a drug
trial shortly and would like some information about it. also i have
carpal tunnel really bad on my left forearm, (i had 3 cortasone
injections into it about 3 weeks ago) with little result. Any ideas
thanks
audrey
Hi all,
I am off today! It's snowing. Nothing better than a snow day to get
caught up on house stuff. We have about 11 inches of snow so far and
it looks beautiful. We've only had one other snow storm this season
so I am enjoying the snow while it lasts. My dogs love the snow and
it's so fun to watch them playing in it.
Hope all is well with you,
Diana
Hello All,
Well I just want y'all to know that I am not gonna be from early
evening till sometime Saturday. My fiance Michael and I are heading
to Portland OR for the funeral of a lady who was like a second mom to
him all through his formative years.
I was up most of the night watching him because he was restless and I
was in a major RA flare. I guess thats the maternal instinct in me, I
know when he is in an FM crisis or about to go into one.
Anyway, I have an appointment wih my GP this afternoon and will ask
her about a mild sleep aid and also to refill my pain meds.
I will see y'all when I return home sometine Saturday.
Much Love,
Rose
I am very sorry to hear about your diagnosis of MS (and RA). I
admire your strength and appreciate hearing your stories. I did not
know that the MS medicine would conflict with the RA medicine. What
can you take then and is it helpful? I know there have been a lot of
advancements in MS research. If you know of anything new, share it
with us. Thanks.
-Diana
I have had 25 years with Rh/Arth and am now using Arava and Enbrel to
try and control it. I am classified as a lvel 3 Rh/Arth sufferer..
there are only 4 levels..[grin]...I have had bi-lat knee joint
replacement surgery and just [Nov 25, 2002] had a total shoulder
[left] joint replacement..
If any of you have had experiance with arava or enbrel i would love
to chat with you..
PS: I use percocet to control my pain..
John
Hi all,
I am new to the group. I was diagnosed with RA in 1995. I am looking to speak with others about their experiences with this disease. I look forward to hearing other peoples experiences and offering support myself.
-Jan
My RA is mainly in my feet - my right ankle to be exact. And when it travels to other parts of my body, the pain is pretty much the same: throbbing, tender, very inflamed. I do have pain on my left foot, too, but the quality is very different: sharp and stinging. Before I was diagnosed with RA, my foot doctor was convinced that I had a Morton's Neuroma and was ready to cut into it. What made me think it was something else was the fact that the series of cortisone shots never helped and the symptoms spread to other parts of my body.
Now, I'm beginning to wonder whether, in fact, it is a Morton's neuroma. Does anyone else feel different kinds of pain that they attribute to RA? It seems to me that the pain pattern and type should be similar throughout the body because of how the disease affects the joints. But maybe not.
I'd be interested in any thoughts on this.
gloria
Hi,
My name is Judy and I was diagnosed with RA this past summer after 5 years of foot pain. It started with my left foot and is now in both feet, both ankles, both wrists, some fingers and one hand. I swear it's creeping all over me. I am 55 years old, have two married children and two grandchildren. My question is; when does RA begin? I asked my Rheumatologist this and he said it doesn't start before the symptoms raise their ugly heads. That doesn't agree with what I've heard before. Can someone clear this up for me?
Judy
Hi everyone,
Remember my post asking if anyone had questions for Dr. Centola? Well,
here's the interview. Even if you didn't have a question you might find it
interesting.
FAIR has finished its interview with Dr. Centola regarding research
into capcaisin and inflammation. The text of the interview is at
http://www.fundresearch.org/centola1_interview.shtml .
We are accepting followup questions until next Thursday (February 6th).
If you're interested, please email me at Alan-Shields@...
with the word "[interviewquestion]" in your email subject. Please also
state if it would be okay to list your name and what group you belong
to.
If you have any other questions or comments, email me at
Alan-Shields@... , and I'll do my best to answer them.
Thanks,
Alan Shields
Oklahoma Medical Research Foundation
With all the pain and weights of life I thought this might make a frown turn upsidedown if even for just a moment..With all the pain I woke feeling this morning, this made me smile and forget the body aches if even for just a few moments..
Anne
If You're Happy And You Know It - Bomb Iraq
If you cannot find Osama, bomb Iraq.
If the terrorists are frisky,
Pakistan is looking shifty,
North Korea is too risky,
Bomb Iraq.
If we have no allies with us, bomb Iraq.
If we think that someone's dissed us, bomb Iraq.
So to hell with the inspections,
Let's look tough for the elections,
Close your mind and take directions,
Bomb Iraq.
It's pre-emptive non-aggression, bomb Iraq.
To prevent this mass destruction, bomb Iraq.
They've got weapons we can't see,
And that's all the proof we need,
If they're not there, they must be,
Bomb Iraq.
If you never were elected, bomb Iraq.
If your mood is quite dejected, bomb Iraq.
If you think Saddam's gone mad,
With the weapons that he had,
And he tried to kill your dad,
Bomb Iraq.
If corporate fraud is growin', bomb Iraq.
If your ties to it are showin', bomb Iraq.
If your politics are sleazy,
And hiding that ain't easy,
And your manhood's getting queasy,
Bomb Iraq.
Fall in line and follow orders, bomb Iraq.
For our might knows not our borders, bomb Iraq.
Disagree? We'll call it treason,
Let's make war not love this season,
Even if we have no reason,
Bomb Iraq
WOMEN
They smile when they want to scream.
They sing when they want to cry.
They cry when they are happy and laugh when they are nervous.
They fight for what they believe in.
They stand up for injustice.
They don't take "no" for an answer when they believe there is a
better solution.
They go without new shoes so their children can have them.
They go to the doctor with a frightened friend.
They love unconditionally.
They cry when their children excel and cheer when their friends get
awards.
They are happy when they hear about a birth or a new marriage.
Their hearts break when a friend dies.
They have sorrow at the loss of a family member, yet they are strong
when they think there is no strength left.
They know that a hug and a kiss can heal a broken heart.
Women come in all SIZES, in all colors and shapes.
They'll drive, fly, walk, run or e-mail you to show how much they
care about you.
The heart of a woman is what makes the world spin!
Women do more than just give birth.
They bring joy and hope.
They give compassion and ideals.
They give moral support to their family and friends.
Women have a lot to say and a lot to give.
This has been sent to you from someone who respects you as a woman.
Pass it along to your woman friends to remind them how amazing they
are............Keep scrolling, there's more!!!!
IT'S
BEAUTIFUL
WOMEN
MONTH
IT'S GOOD TO BE THE WOMAN
We got off the Titanic first.
We can scare male bosses with mysterious gynecological disorder
excuses.
Taxis stop for us.
We don't look like a frog in a blender when dancing.
No fashion faux pas we make could ever rival The Speedo.
We don't have to pass gas to amuse ourselves.
If we forget to shave, no one has to know.
We can congratulate our teammate without ever touching her rear.
We never have to reach down every so often to make sure our privates
are still there.
We have the ability to dress ourselves.
We can talk to people of the opposite sex without having to picture
them naked.
If we marry someone 20 years younger, we're aware that we look like
an idiot.
There are times when chocolate really can solve all your problems.
We'll never regret piercing our ears.
We can fully assess a person just by looking at their shoes.
We can make comments about how silly men are in their presence,
because they aren't listening anyway.
SEND THIS TO FIVE BRIGHT WOMEN YOU KNOW AND MAKE THEIR DAY!!!
hi everyone i have been reading all the messages on ra and
depression. depression is a big factor in this deisease, as you all
know you have to come to terms of your body battling against itself.
i was diagnosed 12 months ago at 35, i have had a really tough time,
trying to tell my self that maybe this is something else not ra, but
as i have genetic markers and all the symptoms, plus my mum has ra i
think i have to accept that i have ra. i finally realised that you
need to take control, i have recently had 3 cortisone injections into
my left wrist, as i have carpal tunnel from the ra, i didnot realise
i was putting up with so much pain. when i could of had an injection.
i am on all the usual drugs and i am hoping to start a drug trial in
the next few weeks for rituximab (mabthera) with my rhuematologist
here in australia, has anyone been on this drug? any advice would be
appreciated bye for now
Research and common sense have brought me to ask this question...
Did any of you experience depression or a traumatic experience
before you had RA? I did, and was diagnosed with post-traumatic
stress disorder once I got RA. The psychologists said that RA was
making me feel powerless again and triggering my body to remember
the past.
I am wondering if our past experiences may have triggered our bodies
to develop RA. I have done some research on this and many people
claim that there was trauma in the past and some people say that
that past triggered RA. ???
Interesting. Did trauma trigger RA or is there some kind of
correlation? But maybe everyone has experienced some trauma so maybe
it's not valid to look into it. But it does seem that people with RA
have troubled pasts (even if in mild form). I wonder if my trauma
was dealt with at a younger age if I ever would have gotten this
disease.
Just blabbering....
-Diana
HI SANDY
JUST SENDING YOU SOME GENTLE (((((((((((HUGS)))))))
SORRY YOU ARE FEELING SO BAD
LOVE FROM JOYCE
XXXXXXXXXXXXXXX
Hey all,
I went to my Rheumy yesterday. I am currently on Methotrexate,
Prednisone, Sulphazine, & Folic acid. None of which is working. So,
My rheumy is going to be starting me on enbrel along with the
others. Anyone know anything about this stuff? Side effects,
usefullness? I have to admit, I am not real hyped up over giving
myself shots every few days! haha. I used to take Imitrex for
migraines, and trying to get up the guts to pull the trigger on that
dang injection gun was worse than the migraine! I am such a wuss
when it comes to needles! haha. Hope everyones pain is a manageable
level today... keep warm! -6 here today...brrrrrrrrr
hello again everyone..
I've been walking every day now since dec.27, I only walk for 1/2
hour but it does help with my depression...but a few weeks after I
started walking i started having terrible back pain. It's ok when
i'm walking but when i wake up the next day, i can barely walk for a
few hours.. the pain wakes me up at night from my much needed sleep,
..I told my doctor but he said to keep walking because it's really
good for RA to have some kind of an exercise program going.
am i making myself worse by walking??? is the back pain a sign that
i'm overdoing it or will the pain go away after i've been doing it
for a few months....
SWIMMING is what i would love to do..I can't tell you how much i love
to swim. I swam 3 to 5 miles a week for 10 years..I stopped about 5
years ago..I'd really like to start again at a very low level but i'm
so scared it's going to make my back worse..
also, my two knees are swollen twice their size and they don't
hurt...i'm not complaining!! just curious as to why..
hugs :)
patty
Thank you, Patty. You are correct that RA is a very individualized
disease. Treatments vary and symptoms do too. That is what is so
frustrating. What works for you may not work for me and vice versa.
So although we can discuss treatments, we have to talk to our
doctors and determine what is the best course of treatment. But what
I like about this group is that you can tell me what the doctor
doesn't. The herbal remedies, the walks, the swimming, the volunteer
work, etc... All those things may help but doctors don't write out
prescriptions for those.
Thank you so much for your thoughts and ideas. I have waited a long
time for a group like this to talk to.
The biggest thing that pulls me out of depression is agility. I do
agility with one of my dogs, Autumn. Agility is an obstacle course
for dogs. Autumn is a 6 lb. Pomeranian and she has so much energy. I
got this breed of dogs because they don't need to be walked - in
general. They don't need exercise. They are pee pad trained and love
it indoors. They're easy. Well, I have 3 Poms and the other 2 are
easy, this one... well, she has so much energy. So I started
training. It's wonderful. I have learned to walk the course and to
send her to an obstacle. Normally handlers run the course with the
dog but becauce I can't run, I've trained her to run without me.
We're learning and having so much fun. It makes me so happy. But in
this weather, I can't go out... TOO COLD. It was -25 F today with
the windchill. Inside bound for me, I don't have a natural fur coat
like my agility partner.
We all have our ways of dealing with depression and the disease
itself. I would love to learn more.
Thanks so much,
Diana
Has anyone here been diagnosed with Behcets? I have been having problems with mouth ulcers for a very long time and recently dealing with reoccuring bacterial infections mostly on upper thighs but also in various other places. When I went to the rheumy last she suggested that I be treated for Behcets, although she doesnt think this is what I have only because I do not fit the criteria for it, meaning my decendants are not from the area that usually hits people with Behcets. Except for this criteria I do have quite a few of the other symptoms that occur with this disease, besides the mouth ulcers and lesions on the legs I also have teary eyes, stomach problems and of course arthritis. So I am being treated for it without a diagnosis and the medicine seems to be working so it makes me wonder. I have looked this up and have found that there really isn't a whole lot of information dealing with this disease. I don't know where else to look so I decided to come here to my online
friends and see if anyone here knows anything about this or where else I could look.
God Bless, Barbara
These two messages are cross posted from my new group. I thought
that some might be helped by this information.
Hello all,
I'm a new member of this group and have been reading
the posts for a few weeks without commenting. They
bring me back to the many years when I was depressed
and in pain and unable to dress myself at times. I had
RA from age 7 to age 25, when I changed my diet and got
well. That was in 1966. I've felt better each year
since then, and at 62 have absolutely no pain or
stiffness as long as I stay on the diet. One slip-up,
however, can result in both a flare-up of RA and a
three month bout with fibromyalgia. Needless to say,
I'm a fanatic about what I eat and drink!
I wonder if any of you know what caused your arthritis.
What worked for me may not work for you ... there are
probably many possible causes behind the symptoms.
Unfortunately, although there are lab tests available
in other countries to identify fluoride as the cause of
a particular case, they have never been available in
the United States.
I've been controlling my symptoms for 36 years by
avoiding what caused them in the first place. The only
"flare-ups" I've had during that time were the result
of accidental exposure to fluorides in the air, food,
or water. You may think I'm crazy, but I'd be willing
to bet that none of you have been tested for signs that
your symptoms are caused by excess fluoride.
Did you know that fluoride causes arthritis? Would you
be surprised to learn that EPA doesn't regulate the
legal amount of fluoride in foods, drugs, beverages, or
anything else for the prevention of arthritis from too
much fluoride. They set the maximum contaminant level
in drinking water to prevent the development of the end
stage of crippling skeletal fluorosis ... not the
earlier stages of the disease, which are marked by
arthritic and gastrointestinal symptoms. The so-called
fluoridation safety studies relied on X-rays!
If any of you are interested in diets to control your
symptoms, eliminating as many sources of fluoride as
possible might be the answer. These days the major
source in food is from pesticide residues. One apple
can give you as much fluoride as five liters of
fluoridated water! One cup of tea can provide as much
as ten liters of water. At four to five milligrams a
day, fluoride is expected to cause crippling skeletal
fluorosis after about 40 years. During more than half
of that time the disease will be diagnosed as
arthritis.
All the best for a healthy and happy new year,
/_/_/_/_/_/_/_/_/_/_/_/_/_/_/_/
Darlene Sherrell
Woburn Post Office
St. George's, GRENADA
West Indies
1-473-443-3713
http://www.rvi.net/~fluoride
Hi Everyone
I'm a 43 yr old female with RA for the past 2 years. About 1 - 2
years ago I noticed a swelling on the left side of my neck but
failed to bring it to the attention of my doctor. I was so bogged
down with trying to cope with this crippling disease, plus numerous
serious issues going on in my personal life that I gave it very low
priority, which is totally out of character for me.
Finally a couple of weeks ago I mentioned it to my doctor and he
thinks it is my parotid salivary gland, and enquired if I had
suffered from a dry mouth which would indicate Sjogren's syndrome
which can accompany RA. I don't have a dry mouth, so he is sending
me to an ENT consultant to get it checked just in case it is a
tumour. From what I have gathered from doing research, only 20% of
tumors of the parotid gland are malignant, but it has still managed
to scare the life out of me and I am kicking myself that I didn't
get it checked sooner. Unfortunately I can't get in to see the
consultant until March, and I can't afford to go private. So in the
meantime I am out of my mind with worry and every day seems like a
week!
Is there anyone else on here who has had swelling of the Parotid
gland, and if so, what was the diagnosis?
Lindy (UK)
I created a photo album for our pet's pictures called Our Pets. I
hope that is okay! I put 3 pictures of my cuties in it....hope some
more of you who have loving pets will post your pics too! Sometimes
if we can forget about the RA for just a little while, we feel
better. Our pets love us whether we walk with or without a limp, or
if we can open a jar....now Suzie loves me more if I can open her can
of food....but as you can see she is a bit on the chubby side! LOL!
Take Care!
Huggs,
Delena
Faye,
I have found my best coping mechanism is my family, 2 cats-Meagan and
Raven, a dumber than a box of rocks black lab/border collie mix-
Little Girl and my best friend of 20 years. Without the love and
support of my fiance Michael, our 3 sons(Sean, Patrick and Dustin)and
my best friend Rhett I wouldn't be able to get past the pain. Also I
have found alot of support through the friendship and love of my "e-
Dear List,
Dr. Centola has volunteered to answer questions regarding his most
recent publication (the paper concerns the presence of the NK1 pain
receptor and its effect on inflamation).
There is a summary of the article, and links to the PubMed summary as
well as the full text of the article at
http://www.fundresearch.org/centola1_summary.shtml .
If you would like to submit a question for Dr. Centola, please email
me at Alan-Shields@... . If you wouldn't mind, please put
"[interviewquestion]" somewhere in the subject so I can find your
email more easily.
The questions will be compiled and submitted on January 23rd (next
Thursday), and answers will be posted. Also, please let me know if you
would rather have the answers posted to the mailing list in one huge
post, or if you would rather I provide a web link.
I hope to interview Dr. Jarvis next on his recent publication
regarding JRA. If there is interest, I will submit a notice when the
time comes.
If you have any other questions or suggestions, email me and I will do
as best I can to answer them or send them on to people who can answer
them.
Thank you,
Alan Shields
Oklahoma Medical Research Foundation
Hi everyone..
I'm having a very tough time fighting depression...I can't take anti-
depressants because the pharmacist said they interact with the
migraine meds i take (maxalt) and there could be serious side
affects..so i have to suffer with it because if i can't take maxalt,
then i'd have to go to emergency for relief.
Just wondering if you all have depression with your RA.
thanks for listening.
patty
Dear List,
First off, thank you Mr. Hughes for your permission to post to the
group.
My name is Alan Shields, and I work for Dr. Michael Centola at the
Oklahoma Medical Research Foundation, where our research is in
inflammation, rheumatoid arthritis being one of the beneficiaries of our
research.
We work with a non-profit organization named FAIR
(www.fundresearch.org), which funds arthritis/inflammation research.
FAIR will be doing a fund raiser in LA on February 16th. It will be a
walk/run. We'd like to get the word out to people who would be
interested in participating or donating.
Also, FAIR will be expanding their website operations (read: *I* will
be expanding the website for FAIR), and we are going to have interviews
with several of our funded scientists, and we are going to start up a
Wiki (a public information repository, edited by the users and by some
of our people). That is, we will be doing this if there is interest. We
would like to know if people would consider this to be a good resource.
A bit more information about FAIR: FAIR funds medical research
at research hospitals (or affiliated with research hospitals, as we are).
Our scientists are published in peer-reviewed journals, such as Clinical
and Expirimental Immunology, Physiological Genomics, and several others.
Here's a link to one of FAIR's scientist's most recent publications, if
you're interested:
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=1\
2519387&dopt=Abstract
FAIR is one of the very few charities that only supports research.
If you would like to contact me, my email address is
Alan-Shields@.... I will try to answer anything that gets sent
my way, or will forward it on to someone who can.
Thank you for your time,
Alan Shields
Systems Administrator
Arthritis/Immunology
Oklahoma Medical Research Foundation
I have been reading some of the postings on this site today, and have
been just amazed. For the past few years, I have constantly been
telling myself that the dizzyness, fatigue, general weakness and
achiness have been in my head, and that I should just get over it. I
never realized that it is all tied in with RA (I never asked).
Having completely refused to acknowledge or accept the fact that I
have RA for the past few years, I am woefully lacking in knowledge
regarding RA and find myself playing catch-up now that my body is
forcing me to face it. Some days it is really tough just getting out
of bed. I have been so afraid lately, and pretty down in the dumps.
I am on Methotrexate, Prednisone, Sulfazine, and Folic Acid, and none
of it is helping. Plus, I am on meds for High blood pressure, and
migraine headaches. I feel like I carry a drugstore around with me
every day. Do you ever wish you could just pull the covers over your
head and say "due to lack of interest, today has been cancelled"?
Hi, I just joined this group, went to chat room, was the only one
there! haha! Well, am kind of used to talking to myself! haha.
Anyway, I was wondering about this group... I was diagnosed 5 years
ago, told there was no cure, and that they would just give me meds to
help with pain. I was having none of that! No way was I going to
let anything interfere with my life. For the first 4 years, I
managed to pretty much ignore it, refused to accept that I had it, or
work around it. But, denial only works for so long. Went to a
rheumatologist about 6 months ago, got on meds, and have been
steadily declining since then. I have been struggling with my job,
which is very physical, and have been trying to find out if there are
any programs out there to help with job re-training so that I might
continue to work, just in a different field?? Thanks for any info
you can give.
Hi,
I haven't posted in awhile but I wanted to let everyone know that we
have
reorganized the Rheumatoid Arthritis section at Remedyfind (we've
eliminated the separate symptom sections and have merged all the
treatments together), and would love it if you could visit and rate
some of the
treatments you've tried. As you may know, Remedyfind is a
non-commercial,
non-sponsored international site where patients can rate the
effectiveness of
the treatments they've used for chronic illnesses like RA. Obviously
we're all
different - what works for one person won't necessarily work for
another - but
sharing our treatment experiences can still help us decide which
treatment
options to discuss with our doctors. The Remedyfind RA section is
located at
http://www.remedyfind.com/hc-Rheumatoid-Arthritis.asp
All the best,
Brett Hodges
founder / editor
Hello everyone,
My name is Donna. I have had RA since I was 19 yrs. old. I am now
35 yrs. I had my left hip replaced when I was 26yrs. old. I have
arthritis from head to toe. I currently take prednisone,
methotrexate and enbrel. I am married with two lovely children.
One child is 7yrs. and the other is 4 yrs. My 7 yr. old was
recently diagnosed with Autoimmune inner ear disease (AIED). He is
losing his hearing. He becomes dizzy, vomits and loses his hearing
often. We are not sure if he really does have AIED because there
has never been any children diagnosed with this before. One Doctor
told me that there are false positives in the genetic test we had
done (68kD test) to confirm our suspisions of AIED. I would like to
know if anyone else has children with a progressive hearing loss or
any of the same symptoms I have discribed above. I think I passed
the autoimmune disease down to my children because of my RA.
Thank you so much and I am looking forward to being part of this RA
list.
Donna
Hi to you all.
I am Cecilia, Italian, living in Italy (Florence).
I am 46 and has been diagnosed with RA almost 4 years ago.
I am married, mother of 4 (3 still at home; 2 of them still very
young) and have a very demanding job (that I like so much and that
is my main help in coping with my arthritis, keeping high my self
exteem and my levels of activity).
I am currently under cortisone (5 mg every day), Methotrexate (1
shot, 10 mg, once a week), folic acid, Vioxx.
In the first year of my desease I was treated also by intrivenous
cortisone (1 gr. once a month).
Then I shifted to remicade and had a great improvement.
Unfortunately Remicade is only an hospital treatment here in Italy
and because of money restictions from the Gocverment to our National
Health Service, it is not still avaible.
My RA is very active and heavy. I have developed also a low stage of
osthoporosis because of the cortisone (not already in menopause,
though). And deformities in both my anckles becaise of synouvial
liquid retentions.
I am now waiting for a new hosptalization, in search of a new
treatment: the doctors speak of a star with cortisone intravenous
and then Anti TNP. Is it much different from Remicade? Any side
effects?
What can I do about the swollen anckels because of the liquid
retentions?
I have had also a story of cysts full of liquid in my knees
(following a severe Arthritis flare) that then broke and the liquid
invaded all my leg. Is it possible to perform anything to prevet
that fact?
Thank you for your help.
Thake care
Cecilia
(I apologize for my bad English).
Hi to everyone who replied to my vertigo question. Your responses
are very interesting and helpful. Blessings, Maxine
Can someone please tell me what is the difference between a RF test
and an ESR test.
also, what does it mean when an ANA test is negative and a RF test is
positive.
thanks for your help.
patty
Hi Marty,
Just because your RF test came back negative doesn't mean you have osteo arthritis. Like others on the list, I have sero-negative inflammatory arthritis, specifically I have Reactive Arthritis (RAA). Sero-neg means I test negative for the RF. My arthritis was triggered by an eye infection and it affects all the joints on my left side. I was diagnosed in 1999 when I was 22.
Osteo arthritis is a wear and tear disease. You don't have to be older to have. Some people are athletes who have had a number of injuries.
I also live in a small town & see a rheumatologist that's 2 hours away.
Take care,
Stephanie
Hello all, Has anyone any experience with vertigo as part of RA or as
a side effect from prednisone or methotrexate? I have been
struggling with it for over a month. Thanks for whatever anyone can
offer. Happy New Year!! Maxine
Hello fellow RAites:
I have been following with interest the thread on diet and what people think does and does not help their condition. Seeing as how it is a brand new year and we are all interested in bettering our health, I would like to suggest a diet challenge to those of you who are interested. It would be our own little study on this site, comprising of however many people are interested with no real scientific basis. But I think this is the perfect place to try new things that might help ourselves and also receive some support while trying to change our lifestyle to improve our health.
So far I think I have heard that sugar, carbohydrates, and caffeine have all been implicated in the possible worsening of symptoms. What I propose is a gradual step by step elimination of these products from our diet. Nothing too drastic to begin with (I don't think I could give up coffee right now!!), but rather a slow, methodical approach where we give up one thing at a time. It doesn't to be the same item for each of us, and perhaps could be as simple as giving up a certain kind of sugar first. It's up to each person to decide. We do this for a week, report back in, and then maybe go on to eliminate something else.
I guess this is basically the "Elimination Diet" that Dr. Andrew Weil suggests. The good part is that after a few weeks, you can actually put stuff back in. That way, if you flare, you can make a real connection between what goes in your mouth and your symptoms. Frankly, I've never been able to stay off anything for long enough to make that connection. What I'm really looking for here is some support and other people to try this with. Frankly, I'm tired of not being able to walk without a cane in the morning and while I'm willing to try about anything to get my mobility back, I need help from people who suffer from the same disease that I do.
Any takers?
gloria
Hi,
I was recently prescribed Celebrex for pain (I have a form of RA that
affects the cervical spine)and wanted to know just how effective it
is...also has anyone tried naturopathic methods to relieve symptoms?
Rose
I was recently diagnosed with RA, after waking up one morning with stiffness and waiting four weeks for a diagnosis. (It seemed like forever to me, but I now know I was lucky to be diagnosed so quickly.) It affects my hands and wrists the most, but I have had pain and swelling in my neck, shoulders and feet. Fortunately, so far I have responded well to the meds (methotrexate, Plaquenil, prednisone). My rheumatologist just added Provigil to combat the fatigue, which is still bothering me quite a bit.
Now for my question: I will be adopting a baby within the next few months. She will probably be 10-12 months old. My concern is carrying her and picking her up, especially since my big trouble spot is my hands and wrists. I'm doing okay with caring for my 3-year-old, but a baby needs a lot more physical support. Does anyone have any suggestions on how to cope? Any particular baby carriers or other products that I will need?
BTW, I also read about the study regarding carbohydrates and RA. (I think it may have been in Newsweek.) However, it stated that carbohydrate consumption has nothing to do with the carbohydrate process described in the study--they are two separate things. Ironically, I started the Atkins diet (very low carb) a week before I developed RA.
Debbie
Hello everyone,
I don't post very often but i do come on and read all the posts..I
tested positive for ra two years ago..when the test was taken, i was
not as sick as i am today...the ra is progressing very rapidly
because i can't take any of the medicines to stop it...I have
hypothyrodism (since 89) as well and i believe that is why my body
has such bad reactions to any meds..(prescibed ones that is)..I can
take ibruprophen and regular tylenol.
I basically have every joint affected in my body..my jaw, my neck,
shoulders, wrists, hands, elbows, knees, ankles and feet. For some
reason my hips thus far are not affected. From my experience over
the last few months is if I eat properly each day, I cope better the
next..On the days that I don't eat right whether it's because i don't
have the energy to prepare it or just don't have the appetite, I find
the next morning when i wake, I feel like a truck ran over me and I
didn't sleep a wink when In fact I did sleep and when i put my feet
on the floor, I can scream in pain and my whole day is a write-off.
Since I've connected my bad days to the days I wasn't eating right,
I've made sure i eat at least one good cooked meal a day..
I still have all the symptoms but they are a lot easier to cope with
when my system is getting good nourishment..
Because I have osteopenia (low bone density), I'm drinking lots of
skim milk. the milk also makes me feel stronger, I guess it's the
calcium my body is craving.
I've also started walking everyday to help my joints...I don't walk
very far, just half an hour around the block and i'm finding that it
is definately decreasing the depression i suffer from ra.
I also have osteoarthritis and fibromyalgia. I am 51 years old, kids
all gone on with their own lives... I'm on my own. I am on
disability and i feel terrible for people who have to get up every
day and go to work or raising a family..
I hope some of the info in this post can be of some benefit to you..
thanks for listening,
patty,
who at this present time has swollen knees, ankles, wrists and feet,
with a smile for you all and a wish for your health to improve each
day.
HI Everyone!
My name is Dave and I have been living with RA for about 5 years now.
I am 29 and my outlook in life has changed a lot since the diagnosis.
Sharing experiences is a great way to cope with our condition and
live life to the fullest!
My current meds are Methotrexate 6 tablets(2 years), Vioxx 50mg,
folic acid, and tylenol throughout the day.
is methotrexate supposed to ease pain or just slow the progression of
RA?
anyone have thoughts on this?
I still experience pain while on these meds.
just a note : exercise helps a lot. during times of less activity I
am aware of the effects of RA more.
so let's all get out there and keep active!
; )
--
Hope you all are having a Happy New Year so far!
Dave
Davefrogs@...
Hello,
My name is Rose and I was diagnosed just a couple weeks ago with
rheumatoid arthritis(degenerative arthritis of the cervical spine)
which was due in part to an injury suffered in 1991. I have Left
Temporal lobe Epilepsy as well as Clinical depression/anxiety
disorder as well. I am 45 and the mom of 3 teenage sons(2are my step
sons and the middle one is mine)
Rose
Thank's for takeing me in,
It's gettin kinda strange around here.
Happy New Year to all!
I wish for the new year for everyone to have a less stressful, pain free and more healthy and prosperous year.
God Bless you all, Barbara
hi everyone... i am thrilled to have found this group! i have FMS
and though it's not really under control, it's bearable most of the
time... i've just adjusted my life to fit as much as possible...
my sister, Marlene, contacted a viral infection about 4 years ago...
she was very ill and it took the drs 6 months to diagnose it... she
started getting better, then different symptoms set in and 4 months
later she was diagnosed with RA... it was very aggressive and they
started her immediately on the medications usually prescribed for the
beginning stages... (i'm sorry, i can't remember the names of all of
them) nothing slowed it down or helped the pain... she was accepted
into a year-long controlled research study for remicade... we didn't
know if she was receiving the medication or not, but she started
improving immediately... so we're sure she was getting it... she had
to take methatrexate at the same time, so for 3 days out of every
week she was very ill with the side effects of the mthx, but the pain
and inflammation of the RA continued to improve... she did quite well
for the rest of the year, then the study was over... within 10 weeks,
she was once again nearly bedridden... the insurance company didn't
want to approve the remicade, so the drs tried a couple other meds
while waiting for approval... one of the meds tried was the arava...
nothing helped... finally the insurance came through and we were all
so relieved she could begin the remicade again... she didn't have the
immediate improvement this time and after 2 treatments, the med
caused a severe sinus infection... so they had to take her off
everything but pain medications and antibiotics for 10 weeks... now
they're trying the kineret without the prednizone (it causes severe
heart palpitations, dizziness, nausea) and she just keeps going
downhill... she can't wear her clothes anymore or go anywhere or
sleep in her bed... she's so miserable... and because her body reacts
so badly to the medications, the drs are running out of options and
are really giving her no hope...
we don't know what to do or where to turn...
so on top of being grateful to all of you for letting me tell the
story :) i would like to ask if anyone knows of products that may
make it easier for her to live with this thing... she loves to read,
but she can't hold the books... she can't sit at the computer and
can't type... etc, etc...
thank you for listening and for any ideas you may offer
melody
I started Remicade treatment about six weeks ago but I am still
experiencing aggressive symptoms. I have had no relief to date. If
you are using Remicade I would appreciate your comments and input.
does anyone know if embrel will be available in australia on pbs? my
mum is on a drug trial of embrel (it has worked amazing for her) and
we have to drive to the gold coast every month to get it. this drive
takes about 1to 1 and 1/2 hours and as we both have ra, we are
exhausted when we get back. so if anyone has any news, it would be
great.
Best wishes to all of you for a wonderful holiday. Hopefully this
new year will be a pain free one for all of us!
Hugs,
Barbara
I have recently been told that I have arthritis. My hands are affected, they are swollen and stiff. I also have pain in my shoulders, wrists, ankles, and hips and back. I was taking Ibuprofen 800 mg 3 times a day, and Tylenol 1000 mg twice a day and the pain has been getting more intense as the weather is changing. I was switched to naproxen this morning and told to take 500 mg twice a day and also that since my hands are not deformed that he would not consider me having rheumatoid arthritis, but they have a baseline xray and the last doctor I saw said they are suspicious for the early stages of rheumatoid arthritis. Does anyone have any suggestions?
Denise, Mom to Jonah Michol born 11/2/01 died 11/14/01, due to left congenital diaphragmatic hernia and brain anomalies. Leanne 11yrs old, my beautiful dancer and expressive young woman, who I hope will achieve all of her dreams. Kevin 10yrs old, Walkerwarburg syndrome (Lissencephaley), Septo-optic dysplasia (optic nerve hypoplasia) hypopituitarism, Tracheotomy, developmental delayed, hearing impaired, seizure disorder and the most handsome and happy boy there is.
i am a 36yo male that was diagnosed with ra about 2 years ago. i had
been having symptoms for approx. 1 year before that. the drs. would
give me a shot of demerol and toradol for the pain and put me on anti-
inflammatory meds. they always said i had just "overworked" the
muscle or joint. my first rheumatologist put me on 15mg prednisone
and 500mg sulfasalazine once per day. i eventually switched drs. and
my new dr. told me this was the wrong combo and took me off the pred.
and increased my sulf. to 1500mg twice a day and feldene once a day.
this is no longer working for me. my flare ups have incresaed to
weekly though they are not severe they still hinder me from normal
activities. i run a low grade fever for two days about once a week,
which my dr. says doesn't have anything to do with ra and did a bunch
of bloodwork to check for infection. i also suffer from frequent jaw
pain also not related to my ra according to my dr. she told me the
next step in my treatment would be methotrexate and i am a little
concerned about some of the reported side effects since i have some
other problems also. is there anything that will counteract the side
effects and what kind of effectiveness can i expect. i feel like my
ra is very aggressive. the frequency of my flare ups and severity are
increasing constantly. any advise would be greatly appreciated.
Hello everyone, Has anyone been troubled with vertigo as part of RA?
I am stuffy having had a cold a couple weeks ago. Since I am on MX
and prednisone, are these meds lowering my resistance to infection?
I saw my doc last week for high blood pressure and vertigo. He
treated the blood pressure but said, "Everyone's got vertigo." And
he didn't look in my ears or treat it. (I am kicking myself that I
wasn't insistent that he take care of the vertigo.) I had my first
bout in my life in Sept. a couple weeks after a hospitalization with
oxygen in my nose, which made my nose dry. An antibiotic from
another doc worked. I will call her tomorrow and hopefully she'll
call in the prescription. I am so new to RA that I don't know the
connections that can occur in other health issues. My old body
usually waited for something to pass and it did. How diligent must I
be to avoid making a situation worse? This is annoying, depressing,
difficult especially since I want to enjoy the holidays. Best wishes
to all, Maxine
Finding Purpose In The Pain
"He gives strength to the weary and increases the power of the weak."(Isaiah 40:29 NIV)
Those of us who deal with physical pain know that after a while, it can lead to emotional pain and even spiritual pain. The frustration of constant hurting and all the trials of
dealing with medical appointments, medicine, insurance, lack of compassion from others etc.,often causes emotional pain. We may question, "Why God?", and may suffer with spiritual pain.
I recently read about a disease called familial
dysautonomia that prevents a child from feeling any pain. This may at first seem like a blessing but since broken bones, cuts, burns, etc., cannot be felt, the child does not live very long.
So, in many ways, pain can be good as it serves as a signal.
Pain often seems pointless, but God assures us that it is always purposeful (Romams 8:28).
God can use pain to develop faith as we learn to depend on Him and our relationship with Him can grow stronger. God can use pain to create humility in how we relate to others. Our thorns in the flesh have a way of piercing pride and deflating an overblown estimation of ourselves.
(2 Corinthains 3:13-15) Our suffering can bring glory to God as we respond with grace.
Although we may never know all the purposes for the pain in our lives, we must remember that God is always faithful. In Him, we find a light in the darkness that leads us into a harbor of peace that passes all understanding.
Prayer: Heavenly Father, even though we don't understand why we suffer, give us peace we know surrender to You knowing Your will for our lives has a purpose.
ABOUT THE AUTHOR:
Patricia Armstrong lives in Virginia Beach, VA, with her husband, Richard. She is a retired elementary school teacher. Patricia enjoys fellowship and activities at her church; reading, gardening and fellowship with members of the Chronic Illness Support Group which she started at her church.
She suffers with pain from peripheral neuropathy but knows God has a purpose in pain.
hi everyone, thought i would post a message as i am fed up with my
arthritis! I seen my g.p. today and he said all my blood tests are
fine. e.s.r normal but i am in a lot of pain, sometimes i think i
really don't have this disease or i imagine i have it. do other
people feel this way or am i really going mad. At the moment i have
the stiffness back in the mornings, swollen joints etc (you know all
the fun stuff) i think i'm having a major flare!!!! my rf test is
always negative. but i have had genetic tests done and i have the
genes. my mum has r.a. really bad and has had it for over 10years
now, i conviced her to move to live with me so we can help each
other, as i am only 36 and a single parent i am finding living with
thid disease very hard to cope with at the moment, anyhow thanks for
listening audrey
Have any of you experienced jaw pain? I had it about a month or two
ago. It went away after a day. Then this past Saturday, I got it
again. It did not leave me until this morning. I felt yucky (I
didn't check my temperature, but it felt like I had a low grade
fever). My (left side) jaw was warm & a little swollen. I hardly
ate for 2 days. It hurt to chew. It wasn't my teeth, nor were my
gums swollen.
Can RA travel to your jaw? I appreciate any help or suggestions.
Hello All, I have applied for SSDI and I am totally aware that I
might not be approved the first time around. I have 7 months of
savings to live on. How does one make it on less that $740/month and
beyond if not approved? I worked 20 years with people at poverty
level so I am