Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

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Caren28 06/02/2009

hi everyone,
A little history before I get to my questions for you guys: It\'s been about a year since my first rheumatology appt. My doc said then that what I have is inflammatory arthritis, most likely early RA. I don\'t have a positive rheumatoid factor, and my CRP levels are always fine. My main symptoms are pain and swelling in both hands and hips, and fatigue. I didn\'t have any damage on x-ray at that first visit. I\'m 29. I do have a positive ANA, but no lupus signs.
I did a prednisone trial, and it helped a lot. I tried MTX after that for a few months, without a lot of improvement. I stopped the MTX when my hair started falling out and now I\'ve been on plaquenil for about 3mos. I just did another prednisone trial to make sure that inflammation really is the problem, and again it worked like a charm. I\'m seeing my doc today, and she is going to recommend I go back on the MTX, this time in combo with the plaquenil. The next step after that will be a biologic.
My real question is- have any of you had to make these kind of treatment decisions without bloodwork confirming your diagnosis? I understand the point of early, aggressive treatment to slow joint damage, but I\'m hesitant to take such toxic meds without being sure I\'m at risk for such damage. I know the pain I\'m experiencing is only getting worse with time, but it\'s hard not to feel like maybe it\'s in my head. Are any of you seronegative but experiencing benefits from RA drugs?

deleted_user 06/02/2009

Hi Caren28, I\'m also seronegative, in fact my blood results repeatedly look very normal (which really I probably should be thankful for). Initially I felt somewhat of a fraud, here was the rheumy talking about serious meds like biologics, and I didn\'t have anything to show for it. The reality was the rheumy was basing his assessment of me, not on my blood results/X-Rays/Scans etc, but on my history and symptoms. He reassured me that it\'s this aspect of a rheumatology assessment that most accurately determines where an RA sufferer is, in the big picture of things.

The fact that you have worsening pain and respond positively to cortisone is a sign that you have destructive inflammation occuring within your joints. Calming the inflammation and subsequent damage is the main goal and the next step is finding the right combination of steroids, anti-inflammatories, DMARDS and biologics that work for you.

I can understand your hesitation and desire to hold back from taking anything you don\'t absolutly need, but the need now is for you to have quality of life with the least amount of pain and the best amount of mobility, for the longest possible time. Talk to your rheumy about your concerns and I hope together you get a working relationship that settles on the right meds for you and for your RA. All the best.

purplekitty 06/02/2009

MsCowgirl is right on with her reply. I was sero neg for years and worsening. The time I showed sero pos, I was actually feeling ok. I don\'t understand the bloodwork not corresponding with the symptoms, but I am again sero neg and worse than ever right now. Good luck.

SKMac 06/02/2009

I also tested seronegative. But my RA dr. kept documenting my symptoms for years and after about 15 years or so, we are calling it RA due to the severity. I think I read somewhere that a certain % of us will never have positive blood tests. That does NOT mean I don\'t have the disease, as my history shows.
Sandy

deleted_user 06/02/2009

I like your doctor, he is treating you and your symptoms, not the labwork. It is hard to find a doc who decides you are really sick when the labs are normal. It is so much easier for them to say "you\'re fine because your labs are good" than to really listen to you and treat you. My PCP told me that for 2 years, when I finally got the referral to a rheumy she was in shock that the pcp hadn\'t picked it up or referred me earlier. Good luck with your MTX, my hair stopped falling out after about 3 months and now only does it when I have to increase the dose, then only for a few weeks. If you are considering getting pregnant let your doc know because that could affect your decision on meds. Ultimately you have to decide what is right for you because it is YOUR health.

pearl240 06/02/2009

Same thing with me being seronegative and the doctor explained how this happens. I would have to go in for my blood work at the exact time that the levels are up. I have all of the other symptoms, and I also don\'t have damage to my joints, but you can see swelling on my hands but the pain is all over every joint. My hips are really bad, but like most of here, it\'s the fatigue that really gets me. My doctor made the determination based on the joint pain, the pain on both sides of the body (both hands, both hips...and so on) regular arthritis would cause pain on one knee or one hand, but with RA it\'s like a carbon copy, the severe fatigue and stiffness in the morning that normally takes at least 45 minutes to improve.
My doctor put me on the MTX and I took my 5th dose last Friday. I can\'t say that Ive had a miracle happen, but I have had a couple of good days during the week, but until I get to 8 pills a week, it won\'t be full dose so I won\'t jump the gun and assume that it doesn\'t work yet. I have nodules in my lungs, so I have to make sure to keep up with my x-rays every 6 months. In 2002 I was told that I may have RA and to start taking MTX.I didnt want to believe that it was true and that a mistake on my part. So now after 12 years of symptoms Im starting to do something about it, and glad that I am.
Best to you

deleted_user 06/02/2009

Count me in as a sero-negative. All my blood work comes back fine, but I very aggressive RA!!!!!! Right now I am on MTX, Pred., and Humira to keep RA under control. Still have joints that are self destructing. The blood work is only one small piece of the puzzle when it comes to RA. Welcome to our family!!!

deleted_user 06/02/2009

I was diagnosed with seronegative RA in 2001, and was prescribed sulfasalazine. After 4 or 5 months, I no longer had symptoms, stopped taking the SA, and skipped into remission until 2005, when RA came back with a vengeance. If you have symptoms of RA, then some form of treatment is clearly a good idea, The details will be up to you and your doc. It\'s difficult for you to experience pain and NOT have it get into your head. I know you mean imagining pain, but trust what you feel and be clear with your doc.

Best wishes.

deleted_user 06/03/2009

Hi: I\'m seronegative - dx\'d w/ RA in October 2007 after a successful trial of prednisone. My doc put me on plaquenil right after that, and MTX since April 2008. Right now, my current meds for RA include plaquenil (400 mg), MTX (25 mg), Mobicox (15 mg), Arava (10 mg) plus calcium, and multivitamins containing Vit D and folic acid amongst other things. My blood tests monitoring liver function have been fine all along, and I have all my hair. Like you, I often wonder if it is really RA or just "in my head" but my rheumy stands by her dx and the aggressive treatment I am receiving. I trust her judgement. My greatest fear is that I will end up crippled like my aunt, who had to have some of her toes cut off b/c they were so deformed from RA damage that she could no longer walk.

Since adding Arava, I think I am beginning to notice some improvement wrt pain and flares. I have only been on it for about 5 weeks now.

My best advice is to work with your rheumy to find a combination of meds that can help you feel better and prevent the destructive inflammation in your joints. Best of luck and keep us posted ~ Kim

deleted_user 06/03/2009

I am 30 years old and was diagnosed in Sept \'07 with seronegative RA also. Whenever I think that it\'s in my head I remember that on a good day I feel great and have energy and motivation to do what I need to do. But on a bad day I can be so sore that I can\'t get out of bed. You know your body better than anyone. If you listen to it you will know that it isn\'t in your head. I\'m taking MTX, Plaquenil, folic acid and Enbrel. Listen to your Dr. They seem to know what they are talking about. Good luck!

deleted_user 06/03/2009

My reumy has said that if mine persists as sero-negative, he\'d like to get a draw of fluid from a swollen joint sometime. Has anyone here had sero neg RA show clear numbers in joint fluid?

Also-- I\'m SOOO SCARED!!!! a needle in my joint?!! Are you NuTs?! Has anyone had this particular test done and how "owwee" is it?

deleted_user 06/03/2009

I only have had 1 blood test come out with a RF level of 28. That was when I was the age of 21. After that, my labs have always come out normal. A few years later I was classified as seronegative. Although a reading cannot be obtained from my blood, my dr\'s have all reconfirmed with MRI and XRays. If the meds help with the inflammation it is worth it. You do not want the damage or symptoms to get worse. I have also been tested for Lupus by 5 different doctors and got a pos ana once. Once again, this is a possibility according to my dr. I hope that things work out for you and you may get some relief.

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