Rheumatoid Arthritis

Dear Laura and All,

Thanks for sharing this Laura. I agree 100%!! A good slogan I read

a few years back is, "Expectations are pre-meditated resentments."

Reading books by Dr. Bernie Siegel over the years has helped me a lot

with the mind/body connection and in taking charge of my health care.

Thanks again. Thanks to those too who responded to my questions

about candida. I read Joe's story last year and it was inspiring.

Best Wishes,

Dodie

NW Pennsylvania

Hi Pris,
I chose antibiotic therapy before trying anything else for a number of good
reasons. First, the side effects are almost non-existent and at worst
minimal and second, it made sense. Since an infection triggered my RA,
possibly an antibiotic is what is needed.
Also, just because the placebo effect does not work for this type of
therapy does not mean that it is still not a valid therapy. From what I
have read the main problem with AT is that since it works differently on
everyone, including the length of time that it takes to work, it is hard to
measure with these types of studies. In addition, just because a
particular therapy is dated, does not mean it is not effective. The
Chinese have used acupuncture for 3500 years in basically the same manner
in which it is used today. It is still a highly effective therapy for many
ailments, including pain management for osteoarthritis. I have personally
used acupuncture a number of times and the results are astounding.
I am not in way trying to be arbitrary here, but just because a particular
therapy is not the latest popular drug being handed out, does not make it
ineffective at all, and many doctors refuse to think out of the box.
Dr.Brown may be long gone, but there are many following in his footsteps.
Finally, if the folks at the Road Back Foundation were not on to something,
why would a medical researcher from Harvard Medical School (where they are
studying AT) agree to be their honorary advisor. I am very new to this
disease, but I am doing my homework. I have talked to a few people
connected with road back who are on AT. It took enormous patience, but
they have gotten results.
I will keep everyone posted on my progress.
Karen

Hi all,
I've been on Humira since the middle of January. It has been a
godsend as my pain went away within 6 to 8 weeks, but this weekend,
my wrist and hand pain is almost unbearable, also my neck and left
elbow is starting to act up. Is this typical with Humira, if anyone
else is on it - how long does it work? I'd really be bummed if it
only worked 6 months. Thanks.
Lois Brooks

Dear Kath and All,

Thanks for replying Kay and Kath. I too am finding more research

on all of what you wrote Kath except I've never come across anything

about what you wrote in your last sentence. Does anyone else feel

as though Candida and/or Leaky Gut contributes to their RA? I'm

about ready to try this Threelac, although I've not ordered it yet. I've

had my RA since 1981 and I'm 45. I've had multiple operations but

thankfully I am not on any narcotic pain meds. I'm grateful for that.

Best Wishes,

Dodie

Northwest PA

Hi,

I am checking out the links you shared with interest. I am doing a lot of research right now too. I'm reading "The Maker's Diet" and some other books. I do believe candida has a lot to do with immunity and illnesses. I also believe that leaky gut is a big cause of RA though I don't have a lot of information on it either. I've just read quite a bit that points to that. I know some people think it's not true at all - but I do think there is a connection. I also think maybe hormones and/or chronic constipation can bring on RA.

Hugs,

Kath

Hi,

I recently went to the doctor for swollen and sore hands and ankles and knees. My RA factor was 28 at the time - normal high is 14. So, it was doubled. Not good. My doctor says if you do show an RA factor you KNOW you have some disease! Real helpful, huh? Ha!! Good luck.

Kath

biopsy results..he said it was positive. He started me on plaquenil
200 mg. I had to see the Internal Medicine Dr today for my results
of blood tests. All of my tests were normal, except my rheumatoid
levels..he said they were elevated. What does this mean? He also
said he was going to make the appt with a Rheumatologist, so I could
have an ANA done, because he was not convinced by the blood test for
lupus that he had done.

Hi,

I recently asked this same question about heat and humidity! Yes - it must play a big part. I notice the humidity worse than the heat. I just found out I have RA also although I haven't been "officially" diagnosed yet. I go see a rheumy in July. I'm taking prednisone (GP gave it) and 5 mg a day enables the hands to quit hurting, burning, and tingling so much at night that I can't sleep. No one in my family has ever had this - not on either sides.

Hugs,

Kath

Weather always has an affect on me. Do any of you find that hot,
humid weather is more difficult for you? Dh was at work, which is
very hot, humid and a storm came up. They work in a steel building
with all the windows, doors open. Within 15 minutes of the storm
coming up, all his joints swelled up. (We live in the South US,
North Carolina.)

Saw my Rheumatologist on Wed. She said I am doing well. Even though
I feel the swelling in my hands has not improved, she does. She said
I need to be patient because antibiotic therapy takes time, months+.
She reiterated that I am a good candidate for antibiotic therapy
since I have never been on any other RA drugs and my RA is in very
early stages. She also did blood work.
Her nurse called today to give me the results of my blood work.
Unfortunately, I was not in my office and she left a voice mail. My
CBC was great and my SED rate was down from 23 to 15. I am guessing
this is good? Or it means nothing?? FYI, my SED rate has always
been in the mid-high 20s. The only way she was able to diagnose RA
was the CCP test.
Thanks everyone!
Karen

Dear Kay and All,

Kay, you have mentioned leaky guy before in posts and I'm writing

to ask if you ever had a problem with Candida? I did the saliva test

yesterday and as I suspected I failed it. Here is site about that test

if anyone is interested:

http://www.nutri-trends.com/spittest.html

Anyway, this site, on pages 15/16 mentions rheumatoid arthritis and

candida:

http://www.globalhealthtrax.com/pdf/candida_report.pdf/e261cda3bfd63032e165b685305b3804;cher;3

I am in no way affiliated with anything concerning products to eliminate

Candida from the system but I am curious if anyone has ever tried this

Threelac that the internet mentions as a remedy? I know there is a diet

that one can go on but any thoughts you may have Kay and others will

be greatly appreciated.

Best Wishes,

Dodie

Northwest PA

Hello, and thank you for having this group!
My name is Carla, and I am 34 yrs young, and have a few questions,
and really hope someone can explain to me what the issues mean that
I have questions to...ok here we go..(might get lengthly)
About 9 months ago I developed a very bad itchy rash on my back, and
went to the dr, and was treated with steroid shots, and told it was
a stress rash. The itching went away, but the rash was still there,
and later the itching came back. Well I tried to deal with it, using
amlactin, and what not on it. Then, about 1 month ago I developed a
very bad raised red, very itchy rash on my arms, neck, and one spot
on my nose, and 2 spots under my left eye. My joints are aching so
very bad, my wrists, fingers, ankles, back, and shoulders. My
fingers are a bit swollen, and hurt/ache to bend them, but I can
bend them. I am extremely stiff in the mornings, after 1/2 hr, I
seem to be fine til I sit here at the computer, or sit to watch
tv..then it all stiffens up again...always aches though. I am
nausiated most all of the time also. I went to the dr, and she
asked me to see a dermatologist...I did. The dermatologist looked
at my rash, and told me it was lupus. He asked me a series of
questions, and that even more confirmed it for him. He wanted me to
see an Internal Medicine Dr. I did. The blood tests were taken,
and I had been having lots of heartburn and such, so he wanted to
see about my gallbladder (ultrasound) When I left his office, he
told me he believed it was lupus. I had to call my derm, to get the
biopsy results..he said it was positive. He started me on plaquenil
200 mg. I had to see the Internal Medicine Dr today for my results
of blood tests. All of my tests were normal, except my rheumatoid
levels..he said they were elevated. What does this mean? He also
said he was going to make the appt with a Rheumatologist, so I could
have an ANA done, because he was not convinced by the blood test for
lupus that he had done. What does all this mean? I was trying to
just absorb what he was saying, and it was 5:30 pm, and I was not
feeling well, and was tired, and he asked me to call him on monday
because he wants me to see the rheumy on either mon or tues...this
seems to be very urgent to get me in that quick? Can someone tell
me what they think? I know I will find out mon or tues, but I am
very curious about all this?
Also...does anyone think there could be a connection between me
being in a building about 2 yrs ago, and developing a terrible itchy
raised rash, on my arms, and neck...only after being in the building
for about 45 min, then it would go away about 45 min after being out
of the building...but this daily situation led to anaphalatic shock
( I was routinely in the building 5-6 days per week for 4 months)
I was sent to an emergency clinic for epi, and later that week I was
sent to an allergist...was given allegra, singular, serevent,
albutural, and zyrtec, and went back to the building after being on
meds for several days. The rash came through all those meds! I
carried an epi pen for that emergency, which did not happen again
Thank Goodness! But the rash remained til the day I left there and
never went back...or so I thought. I did not connect it, I would
occasionly get this rash on my neck, when I would be outside, or
just get hot...I wonder if there is a connection?? Anybody??
I am very happy I found this group...
Blessings
Carla

Hi All,
I am new to the group. I guess I am really new to RA as well. My dh
has been "diagnosed" as having RA. That is, he has 4 of the 7
markers for RA and we are waiting for the results of the blood tests
to come back. If they are positive the GP(general practitioner) said
it only takes 5 of the 7 markers to have a positive diagnosis. My dh
has an aunt who has RA and it has been hard on her.
Dh is still working at a very physical job and it is very hard on
him. He is in pain much of the time. He has been unable to close his
hands. He has had pain in all his joints: shoulders, elbows, wrists,
hands, fingers, hips, knees, ankles, feet, toes. It is easier for me
to be understanding, I think, because I have multiple sclerosis, and
have learned to deal with a body that doesn't always cooperate with
my want-tos.
I joined to learn more about treatments and what others are going
through with RA. We are scheduled to see a rheumatologist in August.
The GP told us there were very few of them in our area so there is a
long wait to see them. He also said not to expect them to be "oozing
with rapport." He said they weren't very chatty and since they have
the market sewn up they don't have to be. We will see how that goes.
In other words, all business. The GP has a military background, but
is nice and very thorough.
Dh has been give prednisone and we are expecting to be prescribed a
DMARD by the rheumatologist. I've seen some talk here of cholesterol
drugs being used for RA and there has been recent research of one of
them being effective for MS.
Weather always has an affect on me. Do any of you find that hot,
humid weather is more difficult for you? Dh was at work, which is
very hot, humid and a storm came up. They work in a steel building
with all the windows, doors open. Within 15 minutes of the storm
coming up, all his joints swelled up. (We live in the South US,
North Carolina.)
Sorry so long. Blessings and prayers to all.
Nita

Today a co-worker came to work newly sick with a virus. It freaked me
out because she sat close to me at one point during the day and
coughed several times. Her eyes were glassy and she said she felt
terrible. I tried to keep my head turned away from her, and I held my
breath as long as I could while she was coughing. I take my MTX
tonight and leave tomorrow for a week's vacation. A viral infection
could wreak havoc! Now, more than ever, I feel that people should
stay home when they have contagious illnesses.
Do any of you avoid fall/winter indoor gatherings when colds and flu
are prevalent? Any tips on protecting youself from exposure besides
frequent handwashing?
Sierra

Sometimes my palms have a mottled, lacy appearance (better since
meds); my doc says this is common. Others here have it? What does it
mean? A few times recently, I've noticed one hand (front and back)
turning a deep, dusky red while my other hand is the usual white.
I guess I've noticed it happening when I'm a little late taking
Plaquenil or Vioxx--but not always.
You guys are the best--hands down!
Sierra

Hi all,
Go to see my doc on Wed. Been one month since I started antibioptic
therapy. I am not better, actually pain in hands and swelling is
same if not more than before. I guess it could be the Herximer (sp)
reaction they talk about on roadback.org., hope so anyway. Or, it
could be weather. We have been having lots of storms, humidity, cold
for us this time of year.
Anyway, I have a lump I want to talk to my doc about. It is about
the size of a quarter on my collar bone. The lump hurts when my RA
is inflammed. Does this happen with others? What is generally done
to these lumps?
My doc thinks I am nuts, but I got this lump and my Rosacea and
Tinitus, and now my RA from a very bad bronchial infection/virus I
had in 1999, worst I have ever had. Well, at least I know when it
happened, although doc will always act like I have 2 heads when I
tell her.
Thanks everyone for your comments,
Karen

Dear List,
I found this list and decided to look for help and share my
experience with genetic Rheumatoid Arthritis. I am from Rio de
Janeiro, Brazil and I have recently started a alternative treatment.
I would like to know if someone has any advice on the following
treatment:
A - Viscum Album Injections
B - Formula: Rheumadoron 1, 2 e 3
Fórmica D 3
Stanun Praep D 6 ou D 8
Erisidoron 1
C Formula: Choleodoron
Gentiana
Hepabile
Ferrum/Pâncreas
Bacharis
D Arnica e Bryonia Oil hot Bath
E Co-Calciodoron (osteopathy)
F Brofenac CLR (alopathy)
G - During crisis, cortisona injetions and duo-decadron (alopathy)
Thanks for any help!
Yara Maria Faria Pinto

My father-in-law has RA. He has been told they will start him on
Remicade in the near future. I have read a little bit about it and
have some concerns. He was also told that he has rheumatoid lung
disease. Does anyone here have any experience with that? He has to
clear that up before he can start the remicade infusions. They did
not do a TB test. It seems that should be done before starting
remicade. I would like to hear from all who have any experience with
Remicade...both positive and negative. My FIL is in very bad shape
and we want relief for him, but we want the best treatment possible.
Are there any alternative treatments that are effective? Please give
me as much info as possible. It's heartbreaking to see him in so much
pain. Thanks.

Hi everyone,
Has anyone heard about any studies being done on cholesterol drugs as a
help for RA? A friend at work told me she saw something on CNN about this
the other day.
Thanks,
Karen

I want to thank all of you who responded to my question about swelling in my
fingers. I guess that since this thing seemed to happen over night, I
expected it to get better just as fast. Not very likely. I did talk to my
Dr. about antibiotic therapy after reading about it on this list, but he
said if my case were milder we would consider it. I guess my must be
moderate to severe since it all happened so quickly. I keep reading
everything I can find on new drugs and try to think positive. What
improvement there has been is wonderful, at least the horrible pain is gone
and I can do most things for myself again. Thank you all for your response.
It really helps to talk to people who really DO understand what you're going
through. I think most people look at me and can't see anything wrong, so
therefore there must not be anything wrong.
Thanks,
Joan

I went to see rheummy this week and got good news!!! Finally I am off Methotrexate. It has been a year of pure he!! on this medication and I am so glad to tell it goodbye!!!

I had lapband weight loss surgery 5 weeks ago. I had to come off all meds for surgery. It was so great to have no nausea, vomiting, diarrhea, mouth sores, eye sores and throat sores!!! I even had a 4 week remission of no symtoms while off all meds and recovering from surgery.

When I started my meds at 4 weeks post op I went back on Enbrel and Bextra. NO prednisone and no MTX. I just could not handle the side effects after having a med holiday.

I finally got my bone head doc to really listen to me. He is not a supportor of surgical weight loss. He did not believe me when I talked to him two months ago about I was being evaluated for surgery. Well he has changed his mind. I am 22 lbs thinner in 4 weeks and feeling great.

I also told him vomiting is totally out of questions since I jsut had surgery. We either needed to reduce the dose or stop the med completely. He agreed to 8 week trial of no MTX and no prednisone. He will monitor my lab values during this time and determine if I need more medication, If so we will try Arava and he is investigating adding Kinert.

Toni

Hi Joan,
I finally got a confirmed diagnosis of RA last month, although I have had
the disease for years. My RA is the worst in my fingers and somewhat in my
feet. I am on antibiotic therapy, Lodene, and Pred. I am only talking 5mg
Pred daily, doc said I can raise if I need it but I am trying hard not to.
I still have lots of swelling in my hands, fingers, and feet. With
antibiotic therapy, I was told it can take up to a year for results, so I
am trying to be patient. It is not always easy though. So, I truly
understand where you are coming from.
Karen

Thanks a lot for the encouragement, hon. I really appreciate it. I am not ultra-sensitive or anything - it just seemed like I got rather "jumped on" just by mentioning diet . . . anyway, I'm not leaving as I do need all the information I can get. I'm a hardy type.

Kath

I understand that the reason carpal tunnel goes with RA is because of the inflammation that occurs - therefore, the nerve passages are narrowed causing the tingling, burning, etc. My hands and arms have gone to sleep a lot at night during the past few years - it comes and goes actually. But, it's very miserable and can certainly keep me from sleeping. I just know that when I started with the prednisone it went away completely.

Kath

There was just so much good stuff in this I couldn't pick which parts to forward so I am sending it all.

Hugs,

[INLINE] Jacy

Arthritis Foundation [INLINE] Mind, Body, Spirit

June 2004

Hello, finally after 10 years of positive RF factors and positive
DNA,but a negative ANA, I have a doctor who is going to treat me for
RA and Lupus. She is starting me on Plaqunil and darvocet for pain.
Also she has me on pamelor to help me get better rest. If any of you
are on these meds, maybe you can give me some info on them. I look
forward to hearing from you. I am so relieved to finally get some
kind of help that I cried. God Bless you all.

Hi there,
I wanted to ask a quick question of those of you who have dealt with RA for
a while. I was just diagnosed 4/26/04. The first symptoms I had were that
all my fingers on both hands and my hands themselves swelled up and were so
painful that I couldn't hardly stand to use them. Two weeks after that my
toes and feet swelled. I saw my RA Dr. a month later. I have been on
Methatrexate, Predisone, Motrin and Folic acid since then. I was told by
the Dr. and later his nurse that the swelling would go down and my hands
would be usable again.
The swelling has decreased, but I am still unable to make a fist and
completely close my fingers. This makes gripping somethings rather
difficult. I scare myself using a sharp knife. I can't hold change in my
hand because if I turn my hand sideways the money falls out. My question is
this, Will the swelling go down all the way or should I just learn to deal
with my hands being this way. I want to be positive but it's getting harder
as time goes on. My Dr. increased my Methatrexate to 15mg a week from 10mg.
I just start the increase dose this week. Will it just take more time?
Thanks for all your information,
Joan

new drug and hope for us RA patients, rituximab, sold under brand name of rituxan is already approved for nonHodgkins lymphoma.....gentle hugs, Marcia

hi, all! read in the USA TODAY, dated yesterday = Thursday 6/17,
under the Health Dept. heading = new drug written up in the New
England Journal of Medicine. Study was done in London, England. The
drug is Lipitor, made by Pfizer, and used to lower cholesterol. I

dear group, I thought some of you might be interested in this chat. gentle hugs, Marcia

Note: forwarded message attached.

Hi,

Just a quick comment on the reply I had on my comments about "The Maker's Diet" - I wasn't implying that everyone could heal their RA with diets . . . I was simply bringing out this information as I am in a very huge search mode right now. I only recently found out I had the disease- and I am doing all the reading I can do. I need encouragement here - not discouragement. I certainly understand that everyone has different bodies and what works for one will not work for another. I take pain killers for my feet which are crippling due to an osteo arthritis thing I have had since birth but I don't tell everyone with arthritis that they should run up and take this medicine!!! The same with RA and diet. I was merely looking for thoughts, advice, information, and most of all encouragement . . . maybe I'm in the wrong place. My letter certainly did not sound judgemental the way it was apparently taken.

Thanks,

Kath

Hi,

I am in the early stages of RA and have noticed that when we have our air conditioning off my hands seem to get worse. They feel more tingly and swollen and they ache in the knuckles a lot worse. Am I imagining this or does this really have something to do with it?

Thanks,

Kath

Hi All,
I know I don't post, but be assured I do read every digest that comes in. I
have developed major pain in my stomach over the past five days. It is
finally settling down a little, but I have not taken any meds since last
Fri. I am sure it is a result of 13 years of anti inflammatory. What can I
do now? If I don't take meds I stiffen up quickly, and if I do, I have pain
and can not eat.
Has anyone experienced this? How do you deal with it?
I have an appt with Rheumy tomorrow and hope he will have some answers. I
am on Remicade every six weeks and this last dose doesn't seem to be doing
much, but with the pain I have had the past few days it is not surprising.
I am beginning to think that RA won't be the death of me but the meds will.
God Bless You All
MizDeb
If You can get out of bed, walk and talk it is a good day!

hello all!
I've been lurking for a few weeks now.... I'm Beth and I've had RA
for 15 years. I've been on Enbrel for the past 4 years, and now,
this week, I will be starting Remicade. I've been struggling w/ a
very bad case of scleritis and living on major doses of prednisone...
and my opthamalogist says that remicade seems to have a pretty good
track record in dealing w/ the eye problems. So, I'm going to give
it a try.
My questions are: What side effects have you experienced? How long
does it take to "kick in"?
Thanks for your help and shared wisdom!
Now, back to lurking :)
Beth

I am a 37 year old man with rheumatoid arthritis who needs total hip
replacement. Please visit my web site http://www.iNeedaHip.com
Also, please help me circulate the web site. I am just trying to
raise money to pay the additional out-of-pocket expenses.
Thank you.
Don

Greetings all ~ I am a new member of this group and thought I'd introduce
myself.
I was diagnosed with RA in May of 2003, after experiencing rapidly
progressing symptoms for the 2 or so months before. My RF factor was
positive but not high, so my doctor suspected an autoimmune disorder but
could not positively identify it. I was referred to a rheumatologist, but
was not scheduled for an appointment until August (I think my doctor
referred me for possible fibromyalgia, I don't think she really thought it
might be RA). What I remember most about that time was the pain,
inflammation, and stiffness that made me unable to function... a few
examples: I was unable to turn over in bed at night or pull up the covers
without great effort; it often took me several minutes just to get out of
bed. I had great difficulty walking and climbing/descending stairs. My hands
were next to useless in the morning; my husband had to button shirts and
jeans, tie shoes and pull shirts/dresses over my head. I couldn't raise my
arms high enough to brush my hair. What amazes me was that I was still more
or less able to pull it together to work until the end of the school year.
My doctor prescribed numerous arthritis and pain medications but nothing was
truly effective. When I saw her again for knees that were full of fluid, she
intervened with the rheumatologist's office and got me an appointment late
in May. The rheumatologist immediately diagnosed RA after exam and a look at
x-rays, tests etc., and began with what he called a "super shot", which was
some sort of steroid, the effect of which would last a month or more. I was
prescribed Plaquenil, and a month later got another steroid shot. I also had
an ultrasound done of my hands that summer, which revealed that some bone
erosion had occurred.When it became clear that Plaquenil alone would not
work, I began MTX, and some months after that, Humira.
A year later, I am able to do much of what I had done prior to RA...
strength and flexibility close to what I had before, I catch myself running
up and down the stairs sometimes. I still have morning stiffness and some
mild pain/discomfort on a daily basis, but by and large doing very well
considering where I started. I try not to get depressed about the diagnosis,
and am encouraged by my rheumatologist's attitude, which is "the goal is
total remission of symptoms".
Sorry this is so long, but I find it interesting to read of other's journeys
along this path, and so thought that I'd tell part of my story. I remember
when I first went to the rheumatologist I picked up an magazine that had an
article about Kathleen Turner and how she came to be diagnosed with RA. I
was amazed at how similar her story was to mine (with the exception, of
course, that she is a movie star and I'm an art teacher... well, that and a
few other things!). One thing I realized was that though it seemed the onset
was fairly sudden, I am now convinced that it had been building up over many
months. Several months before I suddenly and inexplicably could no longer
wear my favorite Dansk clogs... by the end of the day I could hardly walk.
In October I developed carpal tunnel syndrome in both wrists. By the time
spring rolled around I was considering surgery. After the RA was treated, no
more CTS!
My last appt. I had a test for vitamin D level (low levels have been
associated with autoimmune conditions) and a bone density test. I recently
received the results re the vitamin D level: low at 6 ng/dl. (The normal
range is 30 or higher). Now I'm taking a mega D supplement and trying to get
enough calcium along with! Tomorrow I'll find out about the bone density
test. I'm wondering if anyone has experienced the side effect of itching
with any of the medications I'm taking for RA (Plaquenil, MTX, Humira)?
Several times a day the last couple of months, always when I start to get
warm (i.e. getting into a hot car, walking on treadmill, taking a bath,
housework, etc.) I start to get unbearably itchy (torso, neck, arms, legs).
I understand that it might also be a symptom of menopause, but I suspect
medication.
Thanks for reading if you got this far!
Deborah

I was diagnosed by my Rheumy about 2 years ago. He's treated me
with Plaquenil, celebrex and nabumetone (we tried methotrexate but
it seemed to make me sick).
My doctor is not very friendly and really doesn't take time to know
how I'm feeling nor does he want questions asked of him even though
I have a lot!
My big question right now is: I have a good bit of pain in my feet,
ankles, knees, hands, knuckles, shoulders. I have off and on
swelling in these joints but nothing really significant lately.
However my knees and ankles swell a lot lately, but with rest and
wrapping with ace bandages go down. Is RA inflammation always
visible? I know when I was diagnosed my swelling was enourmous, but
he drew synovial fluid to check it for inflamation and it was of
course positive.
My Rheumy looks at and feels my joints and since they aren't swollen
acts like I should have no pain. Is that true? If I'm not
inflammed, should my pain be gone? I know RA pain is symmetrical,
however can one side be worse than the other? My biggest question
is about the pain because I see him in a few days and I want to
either change Rheumatologists or be convinced he's treating me like
he should and that my pain is from something else.
Please advise. I'm getting very frustrated!
THanks, Pam

Dears,
Though I felt ashamed I've decided at last to write to you because I
am really down and I feel desperate. It is only for women - men
please do not read.
I need your advice and I need to know how do you cope with the
problem of having constant vaginal infections, if you have them like
me. I am on MTX (12 mg weekly), Metypred (4-8 daily, it is like
Encorton 5-10) and I had my first Mabthera injection 5 months ago, so
I feel generally pretty well, no pain, little swelling. I was
diagnosed with RA 3 years ago and the infections started when I took
Encorton. I take meds, trying to avoid antibiotics, then I have
negative test results: no bacteria, but the next month it starts all
over again. I feel pain when making love, it ruins my sexual life and
discourages me and my partner from even trying to do it. Does it has
to be like that? I hate it.
Maybe you do know what to do. Am I just consigned to take meds all
the time? If that is the case what is the best for constant fight
with different Streptococcus and Candida albicans? I know it is due
to the immunosuppressive drags I am taking but doctors seem unable to
help me. They just do not understand the problem. Apart from that I
hate gynecological exams all the time. And soon though I am only 33 I
will stop with sex...
Forgive my English and please help. Maybe just there are better
medications for immunosuppressed women then I am being prescribed
here. All advices are welcomed.
With hope
Julietta

http://www.gentili.net/foot/ra.htm
"subluxation" is the word I was looking for...

LIAI Scientists Discover Key Protein in Activating Cell Death;
http://feeds.bignewsnetwork.com/redir.php?jid=df87099b7a5cf0ff
( BW)(CA-LA-JOLLA-INSTITUTE) LIAI Scientists Discover Key Protein in
Activating Cell Death; Research Could Lead to Future Advances in Cancer and
Autoimmune Therapies
Business Editors & Health/Medical Writers
SAN DIEGO--(BUSINESS WIRE)--June 11, 2004--Researchers at La Jolla
Institute for Allergy & Immunology (LIAI) have identified a key protein
(NDUSF1), which is an integral component of the pathway leading to
programmed cell death, a natural process of cell suicide which eliminates
excess or damaged cells. This finding may have important implications for
regulating cell death and could one day lead to the development of new
treatments or cures for some cancers and autoimmune diseases.
In a paper (Disruption of Mitochondrial Function During Apoptosis is
Mediated By Caspase Cleavage of NDUSF1), published today in the scientific
journal Cell, Doug Green, Ph.D., and a team of scientists that he led have
uncovered a key part of the mechanism by which the pathway leading to
apoptosis or programmed cell death is activated.
Because of previous research conducted, in part, by Green's lab,
scientists already knew that the mitochondria, the energy power plant of the
cell, triggers the proteins called caspases to kill the cell. In the latest
study, Green and his team found that the caspases accomplish this execution
by going back into the mitochondria and destroying one key protein (NDUSF1)
which, in turn, accelerates the destruction of the entire cell.
"This is one of the key steps for efficient dismantling of the cell,"
Green said. Not only does the finding help researchers better understand the
fundamental mechanism of how cells die, it also has implications for
advancing knowledge of how the dying cell impacts on the immune system. "We
feel that this event in the dying cell is part of the message which tells
the immune system whether to create an immune response or not," he said,
explaining this could have implications for some autoimmune diseases, which
result when the immune system mistakenly attacks normal cells.
The discovery is the latest of many important findings from Green, an
eminent scientist who is known the world over for his studies of apoptosis.
"Doug is one of the most cited scientists in biomedical research in the
world," said Mitch Kronenberg, Ph.D., LIAI President and Scientific
Director, explaining that Dr. Green's scientific findings are consistently
referenced by medical authors and scientists around the globe. "This is a
reflection of the quality and importance of Doug's research. He is one of
the top scientists worldwide studying the process of how cells die."
Although it sounds contradictory, cell death is key to life. Programmed
cell death is necessary to maintain health as unneeded or unhealthy cells in
the body are killed off to leave room for what is vital. "Cells don't just
die by accident," explained Green. "They kill themselves. And that's
absolutely essential to our existence as multi-cellular organisms." Cancer
occurs when cells reproduce out of control and lose the capacity to undergo
programmed cell death, leading to tumors.
"There are many important human diseases where it's thought that the
process of programmed cell death is defective, such as in cancer and some
autoimmune diseases," said Green. "By better understanding how to trigger
cell death, we may be able to learn how to control it, which could have
major implications for many diseases."
Kronenberg added that Green's finding is a very important step forward.
"Building on this research, scientists may one day learn to artificially
induce cell death," he said. "That would allow the body to rid itself of an
unwanted proliferation of cells, such as is found in cancer."
Other participants in this study include Drs. Jean-Ehrland Ricci,
Cristina Munoz-Pinedo and Patrick Fitzgerald of the La Jolla Institute for
Allergy & Immunology, Beatrice Bailly-Maitre of the Burnham Institute and
Guy Perkins, Nagendra Yadava, Immo Scheffler and Mark Ellisman of the
University of California, San Diego.
About LIAI
Founded in 1988, the La Jolla Institute for Allergy and Immunology is a
non-profit medical research center dedicated to increasing knowledge and
improving human health through studies of the immune system. Researchers at
the institute carry out studies designed to understand and lead to the
development of cures for cancer, allergy and asthma, infectious diseases,
and autoimmune diseases such as diabetes, inflammatory bowel disease and
arthritis. The institute's research staff includes over 100 Ph.Ds.

My doc gave me wrist braces to wear when I sleep. What is the purpose of this?
Okay, now for a not-so-stupid question: Are the callouses just below each of my
pinky
toes related to RA? I've never had problems with pressure going to the outside
of my foot
before, but now I do. What's up with that?
wendy from birmingham

[INLINE]

Shelly,
My insurance covered just about all my surgey and incurred costs. It is a Day surgery procedure with a 23 hr admission afterward. Mine was done entirely laproscopicly so I have 3 very small incisions and one larger one (about 2 inches long) which is were my fill port is located on my stomach.
Some people that do sedimentary type jobs are able to go back to work a week after surgery. You are on no lifting, pushing or pulling over 10 lbs for 6-8 weeks after surgery. I have no external stitches. My surgeon uses glue cause it makes for faster less painful recovery. I was off all pain meds within the first week after surgery.
I felt sore in the stomach area and sort of like I had been kicked really hard a few times in the stomach.
I am 4 weeks post of and feel good. I have gotten my energy back and I am exercising daily. I spent the first 3 weeks on full liquid diet and advanced to soft food at 3 weeks. I will be on soft food for the next 3 weeks and gradually introducing hard foods.
Not all insurances pay for this surgery or any kind of weight loss. So I would recommend checking to see if this is a covered feature of your insurance plan.
This surgery does come with a life time commitment to change in diet and exercise. Basicly you MUST make lifestyle change inorder for this to work. If you fail to change your lifestyle this will fail too. It is not a diet or a magic pill, it is a tool to help you loose weight. It also comes with a lifetime commitment too see your surgeon or doc for regular follow up and care of the band. It does need periodic checks, fills and unfills.
The best place to research different surgical weight loss options is www.obesityhelp.com .
Toni
RA, OA and Fibro

Dear Jacy and All,

From: "Jacy" <jacymail@...

Question: For the past couple of days my knees have felt strange. They
feel full and tight rather than painful. Not even really stiff. But
walking feels very strange because of it. Every once in awhile I get a
stabbing kind of pain, but it doesn't last. I can bend them with no problem
but that sensation of being full and tight is very strange. Anyone else?

You described it just like I do. A sensatin of being full and tight.

I get that off and on now for years. Have it right now. Kinda feels

like it's water retention but I don't know. It's a wierd feeling, that's

for sure. Here's hoping it goes away soon Jacy.

Best Wishes, Dodie

Northwest PA

A passer-by noticed an old lady sitting on her front step.
"I couldn't help noticing how happy you looked! What is your secret for such a long, happy life?"
"I smoke 4 packs of cigarettes a day," she said. "Before I go to bed, I smoke a nice big joint.

Apart from that, I drink a whole bottle of Jack Daniels every week, and eat only junk food.

On weekends I pop a huge number of pills and do no exercise at all."
"This is absolutely amazing at your age!" says the passer-by. "How old are you anyway?"

"Twenty four"

[LINK] Listen to everyone, read everything, believe nothing unless you can prove it in your own research.

jacymail@...
IM: jacygal - ICQ: 96949087
www.geocities.com/mtn_rose

Signature powered by Plaxo Want a signature like this?

Chris, I think we all struggle with weight. I am one of the odd ones that prednisone makes me lose weight. It causes GI upset so I eat even less.
I got fed up and tired of being obese so I took serious action. I had Lapband weight loss surgery May 10, 2004. It was the best thing i ever could have done. It feels so good to see the scale moving the right way these days. So far its only been a few weeks now but so far I have lost 21 lbs. My total weight loss goal is 125 lbs in a year. At the current pace I will reach that is less than a year.
If this is an option for you and nothing else has worked I would highly recommend it.
Toni

Hello everyone! I got the new lab results that the doc was taking
because she don't believe I RA now. She was thinking I had Hepitis
C. I knew that wasn't it,because I had been tested before. They have
had me on Celebrex,Bextra and a few others for the last 10 yrs.
Which I haven't been able to take any of them because of side
affects. She also put me on a anti-depressant, which I haven't
gotten filled. Because I am on depressed because I stay tired all
the time and I can't find a doctor to diagnose me. I also have had 2
positive tests for Lupus and then 2negative tests. And they say you
can't do that. I go back to the doc on the 18th. Everyone pray for
me. I am getting very discouraged. My RF was 167 this time and a few
years ago it was 304.

Question: For the past couple of days my knees have felt strange. They feel full and tight rather than painful. Not even really stiff. But walking feels very strange because of it. Every once in awhile I get a stabbing kind of pain, but it doesn't last. I can bend them with no problem but that sensation of being full and tight is very strange. Anyone else?

[LINK] Listen to everyone, read everything, believe nothing unless you can prove it in your own research.

jacymail@...
IM: jacygal - ICQ: 96949087
www.geocities.com/mtn_rose

Signature powered by Plaxo Want a signature like this?

Hi all, My name is Florence. I have been "lurking" as I have seen
you all call it for a couple of days and thought I would throw my
hat into the ring. I am 44 years old and single. I was diagnosed
with R/A in 1987.
I too had been through a great deal of stress prior to R/A. When I
was about 27 my mom died of cancer, I was her care giver. Shortly
there after my father had a major heart attack and had triple bypass
surgery, I was also his care giver. Within about the next six
months I started experiencing R/A symptoms. We know stress does not
cause R/A, but it surely is one of the many triggers that awakens
those dormant cells.
I have been on just about all combinations of the R/A meds.
Starting with gold, methotrexate, placquenil,immuran, vioxx,
prednisone, enbrel and a few others I can not remember right now. I
have had some bad reactions in the past. The strangest was when I
was on immuran, I developed non infectous hepatitis and contracted
chicken pox on my liver. My immune system was so comprimised that I
was in isolation in the hospital for 2 weeks. I have been on and off
of methotrexate and one of those times, I lost a great deal of my
hair and developed ulcers in my mouth. However, considering the
seriousness of the meds used for this disease, I guess I feel lucky
that nothing more serious in nature has has happened yet.
I have never joined a group before, I have been kind of dealing with
this on my own. Although I do have a great support system from my
sisters, they would do anything for me. They still can not give me
what I really need and that is someone that knows!
So here I am, I am looking forward to getting to know you all. I
promise in the future I will not write so much. I'll give you my
life story in smaller bites. I'm always long winded, but I am just
excited to have taken this step.
Thanks for listening, Flo

I am new to this group, and I have been reading some of the messages
posted here, so I can get educated about the symtoms of RA. I don't
believe that its caused by stress, I believe that its something in
our bodies. Could you imagine the number of people with RA, if it
was caused by stress, the whole world could be RA positive. I have
RA/Osteoarthritis and degenerative arthritis in my lower back. I am
in alot of pain 24/7, and I do have lots of stress in my life, but i
can honestly say that the RA was there before the stress.
I will keep you all in my prayers and thoughts, and hope that we all
find that special medication that will work on our pain.
Your friend
~Rosa~

Hi there,
I haven't posted before today, mostly I've just been reading. I was
diagnosed with RA on 4/26/04. On March 17th of this year my
orthopedic dr. scheduled me for a bone scan because the knuckle on
right index finger and the first joint were swollen. X-rays showed
nothing on either hand. When I went in for the bone scan my right
finger was the only problem I had. I was scheduled for exploratory
surgery on my left knee due to an injury at work. The day of the
scan I was fine. The day after the bone scan all the fingers on
both hands started to swell up. By the day of knee surgery a week
later I couldn't make a fist for the nurse to start the IV. My
Orthopedic dr. at the 2 week check up, told me to go see a
Rheumatologist, my right index finger only showed chronic
inflamation. 5 1/2 weeks after the swelling started, and only got
worse, even my feet swelled until I could hardly walk, I had my
first visit with a Rheumatologist. That day, April 26th, he said it
was RA. I was totally blown away. There is NO history of RA in
either side of my family. I'm the first. It's really been scary
reading all about it and I've finally stopped looking up things on
the internet. This support group has really helped and has given me
lots of information and question to ask my Dr. I went back for a
second visit last week and he increased my Methatrexate to 5 pills
for 2 weeks then 6 pills, I'm on 5mg predinsone 2x a day, folic acid
1x a day and motrin 400mg 3x a day. I was doing Vioxx but I felt
Motrin would do just as much and it has.
Thank you all and sorry this is so long.
Joan

Dear Shelly and All,

From: shelly smiegal <shelsmieg2000@...

Thanks for making me laugh today Shelly and congratulations on the

weight loss. You give me hope. I'm struggling with my eating again and

I pray to get back on track. I do know that when I clean up what I eat I do

feel much better physically, emotionally and spiritually. So sorry about

what you went through also with your hysterectomy. (((((Shelly)))))

Also, in reading this last digest I wanted to add to all that I definitely do

feel bad with the changing weather. It's super hot and humid here now and

it would be great if we could somehow do a poll and ask if we all are

bothered by the changing weather, don't you think?

Best Wishes,

Dodie

Northwest PA

Any of you posters out there have RA as well as thyroid situations
going as well??
My doc/then endocrinologist says that I might have Hashimoto's
thyroiditis which CAN/may be linked to other auto immune types of
disease (eg, lupus, sjogrens, RA, etc)
I have pretty normal blood tests BUTTTT I am wondering if ALSO the
thyroid is/can be another bodily system affected by these insidious
diseases?
Oh by the way, thyroid ultrasound indicated small nodules but heck I
see no difference in the size of my neck?..now he wants to do a fine
needle aspiration?..not sure what that is...HATE NEEEEEEDLES!!!!!
I wonder at times if these docs want to just do all these procdeures
on us to get moolah!..growl!
GOD BLESS to you fellow sufferers of RA and other associated auto-
diseases.....
Hoping for a cure one of these days to our diseases......sigh....
Linda from Reagan country.....
Mtx for 6 yrs, RA, possible Hashi's ...

Dear Kay and All,

From: "Kay Simpson" <Siwelyak@...

That's exactly what happened to me Kay! It was after that I had

the RA test and it was positive. Does anybody else have a similar

story?

Today I'm hurting because my right knee that I had replaced in

1987 has this stabbing pain in it if I try and bend it or walk without

keeping it straight. I don't want to have to think about any more

operations (had two back to back starting last September). Keep

your fingers crossed that it somehow goes away and I can hold off

until this autumn to have it re-replaced.

Best Wishes,

Dodie

Northwest PA

Humira, MTX, Celebrex, Ultracet

Just curious what your low, low dose is?
I started on 2 pills and worked up to 4 pills with MAJOR vomiting, diarrhea, dizziness, extreme fatigue. I stayed on them for 8 weeks and finally after I got drug induced pneumonitis my doc stopped the MTX. Drug induced pneumonitis is the can, be fatal lung complication caused by MTX. I was off for one month.
Since I got such good response my doc decided to start MTX again but injections. I am now on the equivilent of 7 pills per week or 17.5mg. After the first two months of injections I was started on Enbrel. I love the enbrel and wished I had enough positive response to only need enbrel and be able to discontinue the MTX.
Toni
RA, OA and Fibro

I take 5mg of folic acid a day plus Leukovorin CA on the same day as my MTX dose to try to counteract the toxic side effects of MTX. So far nothing does any good.
I have had my dose changed many times and its the same thing. So my doc says as long as labs and liver panel looks good I stay at current dose of 17.5mg MTX a week which equals 7 pills.
I also take multi-vit and a bunch of other supplements to try to help out. I am at the end of my rope and ready to dump this med. I have talked to many others locally on MTX and most have the same set of complainents and we all have different docs.
Toni

I'm 47 and had OA in my knees since I was 19. The RA only showed up in '95.

Lynette

Shelly,
If you want something to laugh about...

This is a Power Point presentation.
For those that don't have Power Point,
here is a free Power Point viewer that is easily installed:
http://tinyurl.com/nmze

Hugs,
Jacy

Sorry to keep bugging you - Kay, can you share your story of how you knew you had RA - when you got it, how the early doctor visits went, etc? Someone new like me would really be inspired and encouraged to hear some of these stories as we strive to push our way through an unknown medical maze. Hey others here - I'd love to hear your beginning stories in detail too.

Hugs,

Kath

I just found out my RA factor number is now 18. It was 25 last time (3 wks ago). I feel better but I still have a little swelling and carpal tunnel going on. (Oh, normal for this lab is 14 or under as far as RA factor goes) Does anyone know how to interpret this? Do you think it is possible I don't have RA and this was just some kind of a fluke? Or do you think I probably do have RA and my factor is fluctuating? If so, does anyone know why it would fluctuate?

Appreciate your thoughts,

Kath

Thanks for the thoughts. I am very interested in the antibiotic therapy too. What type of doctor did you go to who would work with you on leaky gut syndrome and antibiotics? I live near a big city (Kansas City) so surely I can find someone here?

Kath

I've been reading a lot about the dangers of wheat while you have RA, but how in the world do you ever eat free of wheat?????????? Isn't it in just about everything?

Kath

Hi again,

I am still waiting for my second number RA factor - maybe today. One thing I wanted to say though is that I have not been in the least bit tired at all - not one little bit. Not in the past months, weeks or days. Can you still have RA and feel totally energetic?

Thanks,

Kath who is fairly uninformed in this arena!!!

Dear Jacy,

I'm sorry you are having a flare. Yuck. I'll pray for you today.

I know what you mean - you know, we can't control everything in our lives, that's for sure. We could do everything possible right and still we will die someday, huh?!! I guess that's the main thing - do our best caring for our bodies while we are here and knowing we are really not going to be here too long overall anyway.

Have you heard of Leaky Gut and how that affects RA? Or causes it?

Hugs,

kath

Dear Friends,
We went back to the neurologist today for test results. He said that
Will's spinal tap was normal so he has ruled out MS as a diagnosis.
They did a EMG in his office. For those who don't know about this it
is a nerve study. They usually do this with carpal tunnel. They
attach electrodes to both hands and both feet, one at a time. They
then give you an electric shock in several places in the arm or leg
and the computer times the length of time it takes to go to the brain
and back to the electrodes. The doctor then stuck a needle in
different places in one arm and one leg/thigh. He had Will flex these
muscles and checked the response. Will said he could live a lifetime
without doing that again. It showed that there has been no nerve
damage. Will has gotten the feeling back in his feet and legs. It is
getting better in his abdomen, but still numb in his chest and hands.
The doctor was pleased with how he is doing. We will go back in about
2 months to have another MRI done. He said that if it is a tumor it
should show up by then. If not, he can see how well the mylin has
healed. He told Will that swimming would be very good for him to
regain strength aad stamina.
Like a very smart young man, Will got outside while I was gone to
Walmart this afternoon and trimmed some hedges and pulled up a bunch of
monkey grass we had been wanting to get rid of. He is now overtired
and hurting a bit, on his way to take a shower. This is the most that
he has felt like doing in several weeks. Hopefully we are on the mend.
Thank you so much for all who have written and for all who have been
praying for Will. I have been sharing your emails with him. We so
appreciate all the emails we have received. I truly believe our
prayers are being answered.
I guess I'll hush and get this sent. I am in the process of getting
the house ready for reappraisal for refinancing and I still have a lot
to do. Until later......
Hugs,
Libby

Study Links Estrogen to Rheumatoid Arthritis
Lab Findings May Have Implications for Other Autoimmune Diseases
June 3, 2004 -- New research may help explain estrogen's role in rheumatoid
arthritis and other autoimmune diseases that afflict women far more often
than men.
Women with rheumatoid arthritis tend to have fewer symptoms during
pregnancy, when estrogen levels are high. Symptoms tend to worsen after they
give birth and at menopause, when levels are low. Although a link between
the female sex hormone and the autoimmune disease has long been suspected,
the clinical evidence has been contradictory.
Continued: http://content.health.msn.com/content/article/88/99816
Hugs,
Jacy

Hello,
I've been on MTX a month now, and it's going well. I'm quite wiped
out the day after taking it, though, so I've kept my "day after"
unscheduled. I have a wedding coming up on a "day after" in two weeks
however, and I'm a little worried about how I'll hold up. Any advice?
Thanks!
Sierra

Why Stress Can Make You Sick

Researchers at Ohio State University have discovered a link between chronic stress and

a body chemical that is associated with the development of serious and even deadly conditions,

including heart disease, cancer, Type 2 diabetes, and more.

http://stress.about.com/b/a/089139.htm

[Jacy] There really isn't anything more on the link, though it does point you to other sites.

I am doing a lot of reading and research as to why one does get RA - so going along with your question, I believe stress does have a factor but maybe even more than that is diet. I have read a lot about "leaky gut" syndrome. Have you all heard of it? It's discussed in the books that talk about RA and natural treatments and the books that talk about medical physician treatments. It's pretty well agreed upon that diet and leaky gut and also hormones are a major factor in RA. I think that was my problem for sure. I'm actually very healthy - not stressed about anything unusual - but I am 44, in perimenopause quite heavily, and probably have not had a habit of eating the best. My hubby and I are going to try to really study the diet side of things and see if we can help me that way. Has anyone read "The Maker's Diet" by Jordan Rubin?

Smiles,

Kath

Hi Jacy and All,
Thanks to everyone who replied. Glad you added "triggered" Jacy!
That's what I was trying to say when I said "caused". I believe that I
had a virus dormant in my system from previous and numerous strep
throats and the stressful events in my life in the beginning of 1981
triggered the RA.
Best Wishes, Dodie

I forgot to put my email address oa=n my last note it is
sherriecorn@... once again thank you

What bothers me about RA being "caused" by stress is that then some can, and will, say, it is all in your head. We know it isn't all in our heads. But this could conceivably cause insurance problems.

I am not downplaying the part that stress plays in Ra and other auto-immune diseases.

But rather than being "caused" by stress, I believe it can be "triggered" by stress.

But the underlying cause was already there; whether trauma, virus, genetic pre-disposition or something else.

Hugs,

Jacy
~Lead me not into temptation; I can find the way myself.
Rita Mae Brown

My name is Sherrie Corn and I have rheumatoid arthitis and I am
looking for someone to talk to I would really like to talk to someome
I could really use a freind thanks for lisnting to me Sherrie

In my case, RA runs in the family. My mom has it, as did her
grandmother and an aunt. That helps me when I worry that I might have
been able to prevent my condition somehow. There's definitely a
genetic factor involved.
Sierra

Dear All,
So glad to read the above. I had heard a long time ago that RA was
caused by
a dormant virus we all have in our systems that is brought about by some
stressful situation in our lives. That's what happened to me!!! 6 months
before
being diagnosed in 1981 there were three stressful events in my life
starting out
with my mother's death. Does anybody else have a similar story?
Best Wishes, Dodie

I can't believe the doctor won't diagnose you as having RA. You have all the symptoms plus your RA count is high if you ask me. I know the counts fluctuate in different labs. In my doctor's lab anything over 14 is high. I have a count of 25 but I'm going in for a new count today. I've been told that if you have an elevated RA factor you can bank on the fact that you have something - most likely RA, but possibly lupus, etc. Have you been to a rheumatologist?

Kath

was told 10 yrs. ago that I had RA. And they suspected lupus as
well. I had a positive and a negative lupus test. Now I have moved
to Indianapolis,Indiana thinking I might be able to find a doctor
who could pinpoint what is wrong with me. Today I went to a
specialist and she says she is not sure if I have RA, because my RA
factor runs between 167 and 304. She couldn't find the inflamation
she says.

If you've only had symptoms of RA for a month and your RA factor is elevated, and you go to get xrays done, are you really likely to find joint damage already? How quick does it destroy your joints?

Kath

My ANA and sed tests were negative/normal and my RF was only slightly
elevated. But the xrays sure show the story.
Hugs,
Jacy

Hello my naame is Sherrie and I have remicade arthietis and am
looking for some to talk to my email address is
sherriecrn@mailaka,comAm looking fordward to talking you soon

Sometimes you just have to laugh...

Hugs,

Jacy

~Do not meddle in the affairs of dragons, for you are crunchy and taste good with ketchup.

I am not sure why, Diane, but I think your message to the loop only came to
me. I am forwarding it on to all so others can comment.
By the way, you are describing my pain. I'll be interested in hearing if
others have experienced the same thing.
:o) Christine

In high school I had a barbaric maths teacher, he was cruel and
abusive and everyone in the class was frightened of him. Although I
had managed to bluff my way through primary school knowing almost
nothing about maths, this was the year I learned all I needed to
know. This was the year that every single pupil in my class learned
all there was to know about maths.
Arthritis has been the nastiest, most unforgiving, unrelenting
teacher I have ever had the mis-fortune to know. Arthritis has also
taught me the most valuable life lessons and given me the best life
possible. So I must give credit where credit is due. Arthritis has
taught me first of all to respect myself. I have learned to say no
and mean it and to pace myself. I am instinctively connected with my
body and listen to the whispers of wisdom. I have a `stress radar'
now and diffuse stress as soon as I recognise it. Arthritis has
taught me to eat well, breathe and move, pay attention and listen to
my body and give myself permission to relax and enjoy my life. My
health is so good that I never get ill; my blood pressure,
cholesterol and sugar levels are perfect. I do not tolerate gossip,
criticism or negativity in any form or from any person including
myself. Therefore I am happy, relaxed, creative and content. Most of
all I am pain free and have been now for almost 2 years.
www.reinventingmyself.com

I was told 10 yrs. ago that I had RA. And they suspected lupus as
well. I had a positive and a negative lupus test. Now I have moved
to Indianapolis,Indiana thinking I might be able to find a doctor
who could pinpoint what is wrong with me. Today I went to a
specialist and she says she is not sure if I have RA, because my RA
factor runs between 167 and 304. She couldn't find the inflamation
she says. But I have been hurting severely lately. So she is doing
some more tests and checking for hepitis c which I have had this
test before also. And it was negative. She says the tests that came
back positive should have made my ANA test come back positive and it
didn't. It came back negative. I have most of the lupus symtoms and
I know I have RA. I hurt to bad and I swell. I just want someone to
find out what it is and help me, from hurting and being so tired! If
anyone has any information, please let me know. Thank you

Thanks, everyone, for your replies. The jaw pain is already easing up. It was bizarre the way it came. There was no building up to it. I just woke up and it was extremely painful. I hope it doesn't come back!!

:o) Christine

Hi folks,

I got up this morning, started eating my breakfast and realized that I had severe jaw pain where my top and bottom teeth come together. It mostly only bothers me when I chew. Does anyone know if this is related to RA?

:o) Christine

Hi,

My doctor says that we are taking things one day at a time. If you try to figure out all your meds in the longterm sense - it can be totally overwhelming and defeating. I've been on the opiads for almost two years now and have never had to increase. If you are faithful to follow the directions your doc gives, you would be just fine. My doctor is very careful about upping dosages and won't do it very easily. If you work with a Pain Management physician (my doc has tons of letters behind her name!) it is much better because that is their business . . . most other physicians are simply scared to hand out any drugs like that. They worry about abuse, and unfortunately can't help most of us.

I take my meds every single day - I am totally fine in the head and my life is very normal! I drive, work in a hospital, work at home as a writer, and do everything else everyone else does. If I didn't take my meds, I would be stuck sitting on my couch all the time. What a life that would be - ha!

Hope this helps -

K.

When I take opiates my tolerance goes up very quickly.
If I dare increase the dose, it will go up even faster.
So what does a person who is in pain 24/7 do?
There is no way I can take the opiates every day, let alone every week.
Is there anyone who has been on opiates every day for years?
Or does the doctor cut you off?
Don't you have to increase the dose?
And if so, won't you be cut off in the future?
Pris

I get terrible ulcers in my mouth and throat on Methotrexate. I take 4 mg folic acid a day plus I take a drug on the day on my methotrexate injection called Leukovorin CA. It works wonders. Also there is magic mouth wash to help with sores as well as a steriod/lidocaine paste you can put on them to help releve the pain. Take ro your doc ASAP you do not have to suffer like this!!!

Good luck

Toni
RA, OA and Fibro

Paulette,

I have taken MS Contin for a year now. It is time released morphine in 30 mg pills. I have it three times a day. I am a unique "case" though. I was born very very crippled and after six surgeries I could walk at age three; however, my feet were never really treated right so they are now crippling and very very very painful. They are riddled with arthritis. I take the pain meds just to get around normally in a day.

I just found out I also have RA - I am so upset. I never dreamed. Now I have these horribly painful feet with osteo and I find out I have RA too!!!!!!!!! I am trying to just get past the anger stage. I only found out about a week ago.

I am addicted to the morphine - but let me explain. My body is addicted. My mind/mental/emotional, etc. is absolutely not. I say this because number one - this is normal in people who suffer with great pain. Rarely do they get hooked on their meds. They only take them when they need them. I have to take the MS every day because if I don't my body gets kind of icky feeling. However, I know I can go without them because I've gone a week without them at all - before I knew that my body was addicted. I didn't ever crave any or want them - I just knew that my body felt like it had the flu.

It's a hard tough choice to make - I know. I work closely with a Pain Management specialist at a large teaching university. I see her every three months. When I want off the drugs, we will work on that slowly. It's really not that big of a deal.

Do many of you with RA also suffer with Lupus?...Isn't Lupus the
disease that shows up with a reddish rash on the face???..
Sheesh, boy I hate these auto immune diseases!!!!!
Thanks
Linda
RA 6yrs, mtx, plus pain pills when needed...

Hi ,
I have just developed a compressed nerve in my neck that seems to be
affecting my right arm with loss of feeling in my thumb area. I have been
given Morphine for the pain but I am too scared to take too much of it as i
don't know enough about it except for the fact that it is addictive. Does
anyone have any information or personal experience of morphine.I only have
10 mg tabs.
I also have a mouth full of ulcers as well as ulcers in both nostrils that
bleed all day and just won't heal.
The Rheumny has taken me off Methotrexate for 3 weeks and is getting me to
take Folic Acid every day for the next weeks.
I do hope that it is enough to start the healing process of the ulcers.
Cheers,
:-)
Paulette

Anyone get bursitis of the hip?
Other than steroid shots, what helps?
Pris
The book for the extreme pig person -
This is not Pighood 101, it's a step beyond "how to" books.
Color photos, problem solving, tricks, aggression tips.
"Potbellied Pig Behavior and Training"
www.valentinesperformingpigs.com

I'm having more and more trouble with dry eye. The artificial tears
I got at the drigstore did not help much but the optometrist
suggested another type called Systane that lasts longer. Though even
with that I'm using them at least every two hours.
He also said drink more water to keep hydrated and also to flush all
the toxic drugs more easily.
I hadn't quite thought of it that way but coincidentally the
methotrexate wasn't as bad this week with more water going through.
BTW the amitriptyline did take getting used to. The day after my
first dose I was sitting on the couch thinking that I could move
maybe if the house caught fire but it would have taken a lot to get
me going. I did get used to it so that taking 2 in the evening left
me fine for the day.
After I stopped I used the remaining pills as muscle relaxants when I
got so tired and sore I could not rest. When you have no tolerance
for the drug 1 pill can relax you for 24 hours.
Annette

Hi Amanda and All,
One book that has helped me so much over these last 23 years deal with
my RA is a book now entitled "Chronic Illness And The 12 Steps". I have
no affiliation with the author, I just know that a lot of what she has
written
has helped me deal with everything. Here is Amazon's URL for the used
copies of this book (under it's original title):
http://www.amazon.com/gp/product/offer-listing/0894865625//104-9751328-4352709?c\
ondition=all
and here is the URL for the book now new:
http://www.amazon.com/exec/obidos/tg/detail/-/1568383479/qid=1085788696/sr=1-1/r\
ef=sr_1_1/104-9751328-4352709?v=glance&s=books
Hope this helps Amanda. I've lived with my RA now going on 23 years
and I'm 45. It hasn't always been easy but this book has helped me a lot.
Best Wishes,
Dodie
Northwest PA

I really like my rheumatologist, but there's something that's been
bothering me, and affecting my trust a little. When I first went to
see her, I told her I had dry eyes. She gave me a sample pack of
Salagen and encouraged me to try it. This was at the end of our visit
and she was in a hurry, so we didn't talk much about it. When I got
home, I read the literature, and while a lot of the info. described
Salagen's effectiveness in relieving dry mouth (which I don't have),
it said absolutely nothing about dry eyes. With the new meds I'm on,
the idea of taking another pill was not appealing. And, my eyes are
not a huge problem; using drops keeps me comfortable and has become
second nature.
When I had my next visit with the rheumy, we talked a little about
dry eyes. Clearly, she had no notes in the chart about giving me the
Salagen sample. She said it was good I could manage with the drops,
because "there are meds that can treat it systemically, but you don't
want to take them unless you absolutely have to."
Anybody else have experiences where you get conflicting info. from a
doctor you like?
Sierra

Hi, I'm a new group member, but by reading some of the articles i
can relate with alot of them. It's hard for people to understand how
hard it is dealing with R.A. I've had it since i was 8, well it's
been well over 20 years. It's a lot worse now but i still try to do
as much as possible, my motivation is to never give up and just keep
moving.

Dear Jacy,

Do you know the answer to this question - IF you have an RA factor that is higher than 14, does that mean you have RA for sure????????????

Thanks,

Kath

My rheumatologist just prescribed this - 10 mg before bed - for insomnia. The dose for folks with depression is usually 75-150 mg. I have found that since I have started taking it I have had increase of appetite and, rather than lifting my spirits up, I am plummeting down in deep depression. I am also foggy during the day. I am wondering if it is possible that this medication can have the opposite effect. Has anyone else tried this drug and had this experience?

:o) Christine

Hi,

I'm a newbie here - I am almost 44, married 25 years, and mom to three great sons - 18, 19, and 21. I just found out the "great" news that I have RA. I was devastated. No family history, never dreamed I'd get this. I already have horrible osteo arthritis in my feet due to a birth defect in them. Now this . . . more pain - just what I want. Okay - enough grumbling. Please, forgive me. I've not quite let this all sink in.

My question is this - what was your RA factor when you found out you had RA? Mine is 25 and I just don't know how high or low or whatever that number is.

Thanks a lot,

Kat

Hi,

Read your letter and can rather relate - Im "only" 44 and I am feeling quite down about my new diagnosis of RA. I absolutely can't even believe this is happening to me. I've never had anything like this before. My family has no history of it either. It just popped up on me and my doc found it in a routine blood work. My fingers are swollen as well as my wrists and knees and ankles. I have some pain but nothing horrid yet. I fear the pain more than anything because I have crippling feet from a birth disorder that are laden with osteoarthritis and pinched nerves and I can't imagine hurting anymore than I already do - I am not sure how I'll handle it!! I don't think I do so well now and I take very very strong pain meds. So, I can understand your sadness.

I guess we both need to accept this and move forward though, looking to the good things and moving to new territories remembering that this is no accident. We were created with a purpose and a plan.

Maybe a little count your blessings book would help you out - you know, write down five blessings every day for awhile.

Blessings,

Kath

m new to this list. I live in a really small town
and just have no one to talk to about this stuff.
Does anyone ever get depressed? I find that whenever
I start having a flare-up as my doctor calls them, I
get so down on myself and kind of retreat from my
friends and just plain feel sorry for myself. I guess
I should feel lucky that I'm not in pain all the time,
but I'm just wondering if anyone else feels like this?
I joined this group to hopefully feel like I am not
alone since there are no support groups close to me.
Does it get better than this? I'm only 25, and
already find I can't do things I used to enjoy. I'm
also a 6th grade teacher and find it hard to keep up
with the 24 12 year olds I work with :)
Thanks for listening.
Amanda

I would say that many people who find they have a chronic disease
become depressed. In my case I had all of the classic symptoms-
trouble sleeping, waking up really early and being unable to fall
asleep again, general unhappiness.
My doctor was a real old fashioned guy who said he was treating the
sleep symptoms by giving me a muscle relaxant which I took for about
6 months and then stopped. It turned out he did not really lie but
shaded the truth as he prescribed amitryptiline which is an anti-
depressant. It did work. From what I have read clinical depression
is a chemical imbalance which when corrected may not recur and I have
been fine all these years since. Just unhappy with the jerk doctor.
Annette

I am more a reader than a poster on this group, but wanted to write and ask for
your
prayers and good thoughts. I am currently at the hospital with my 21 year old
son. He
started experiencing numbness in his feet on Thursday morning and by Saturday it
started
traveling up his legs. By the time we were at the hospital and saw the doctor,
the
numbness had traveled to his chest. He has been through multiple blood tests,
two MRI's,
and a spinal tap. So far the neurologist has suggested the possibility of a
tumor, multiple
sclerosis(sp), and transverse myelitis. All of these are serious. We won't
have more
results for a