Advice from more experienced members | Arthritis Information
3 years ago I experienced swelling in the joints of my hands and the RA factor test came back positive. I saw a Rheumatologist and he diagnosed me with RA. He does lab work every 3 months. The sed rate and CRP has always been within the normal ranges but the RA factor keeps getting higher. I am currently on methotrexate, folic acid, b-12 injections and extra vit D. I have tried tramadol, celebrex, mobic and predinosone. The celebrex worked for about 1 1/2 years until my stomach could no longer handle it. The predinosone worked even better but the side effects were just too much. The tramadol was useless. I saw some improvement with the methotrexate but not much. I am fatigued beyond beleif and am always in pain. My life has become so restrictive that I rarely can gather the energy to clean my house, go shopping, viisit relatives or do anything social. I have given up many of my outdoor hobbies. The pain drastically interferes with my sleep so that also affects the quality of my day. I have tried warm baths, walking, meditation, physical therapy etc. All are nice but have no real effect. I am not truly sure I have RA. Is it possible to have RA but have a negative SED rate even when your joints are swollen and red? X-ray shows some degeneration of lower spine, arthritis of hands and knees and "narrowing of the spaces in the fingers" whatever that means. Does anyone have any thoughts about whether it is RA or anything I can do to ease the pain. By the way, I can't stand my Rheumatologist but there are only two in a 50 mile radius. Any thoughts appreciated.hi
if you can't stand your rheumatolgoist it is time to go see that other one..or drive further if you have too. WHat you described certainly fits the symptoms of an inflammatory arthritis or possibly a spondylitis (lower spine involvement fits spondylitis more than RA)
It does sound like a med change should be in order...an increase of the mtx, an addition to the treatment plan... Overall pain may indidcate that you might be exhibiting symptoms of fibromyalgia or even hypothyroidism. When was the last time you had a thyroid panal done?
Its time to take control and really search for more effective treatment
I second Buckeye's suggestion that you find another RD ASAP. RA can be very sneaky when it comes to blood work - from your description, it sounds like you have RA to me. Hugs
1. Switch rheumatologists. If the next one isn’t of your liking either, then look further. While you may have to drive farther bear in mind that many of us [when in a controlled mode] visit our rheumatologists about once every 3-6 months. So it may mean a bit more driving in the beginning, but once you’re under control you won’t mind a lengthy trip a few times a year. Believe me, you have absolutely GOT to have rapport with your RD. It’s crucial to your success in managing the disease.
2. Celebrex: I wasn’t aware that Celebrex caused stomach distress. In fact, I always believed that it was less bothersome than other NSAIDS. Also, Celebrex loses its effectivity over time. The way to get around that is to get off it for a month or so and then start up again. You might well be pleasantly surprised. I know I was.
3. Tramadol: totally useless for me, too.
4. Mobic: makes me sick to my stomach.
5. Sero-Negative: there are a number of us on this website who are sero-negative.
6. RA: what makes you think you don’t have it, given you have the antibodies and it appears your symptoms are in line with RA?
7. Sed Rate: I’ve never heard of a negative Sed Rate. It’s always a positive number whether you have RA or any disease or no disease. Mine has NEVER in almost 20 years been out of the normal range.
You have a disease that can be treated. Sometimes it takes a while to settle on a treatment regime that works.
Wow: Thank all of you for the fast replies. I am glad to have some support. When I said negative sed rate, I meant it was in the normal ranges, usually around 20. Why I thought I might not have RA is that my joint swelling is almost never symetrical, sed rate normal, dry eyes, beginning to have a dry mouth, back pain and late onset. (started at age 60). I beleive it is an auto immune disorder but not sure it is RA. I tried the Celebrex and the mobic on several occasions again when I couldn't bear the pain anymore but I always end up with stomach pains and naseau. I tried Prilosec but it didn't help. The celebrex and mobic also raise my blood pressure and make my feet swell similar to predinisone. When I read what has happened to some on this list I do feel a little better. my life is not as bad as theirs and I can't imagine how they manage to keep such good attitudes but maybe if they can do it then so can I. When I went on the methtrexate my TSH levels became hard to control. After about 2 years and 7 increases in synthyroid, it is now back in normal ranges. I will read up more on spondylitis.I was hypothyroid several years before I presented with autoimmune arthritis. I have found no correlation whatsoever between MTX and TSH in nearly two decades. I have found a correlation between TSH and Vitamin D, though.
Celebrex will cause edema in many patients. You might try the Mobic without the Celebrex. [Although for as long as I've used Celebrex I've had periods with ankle edema and periods without ankle edema.....I've found that in my case it pretty much relates to how much exercise I'm getting.] In any case, I'll put up with edema in exchange for pain relief. It's a trade off.
RA and autoimmune diseases do not have cookie cutter criteria for diagnostics. That is, no two people will have the same exact symptoms.
you might also look into primary Sjogren's SYndrome with dry eyes and mouth as symptoms
I agree with all that's been said, especially about finding a doctor you can work with. Unfortunately with diseases like ours, you have to do some of your own research and ask the right questions, so you need to find a doctor who will respond to that. For example, it sounds like you're not on the right meds for you. There are a lot of different prescription NSAID's you can try instead of Mobic or Celebrex (different ones work better for different people): Daypro, Voltaren, Relafen, Clinoril, Lodine, Salsalate and Indocin (the last one being a last choice because it's hard on the stomach). For PPI inhibitors, instead of Prevacid, you can try Protonix, Nexium, Aciphex, or there's a new one out I can't remember the name of it. If the methotrexate isn't working (and it isn't just a dosage issue), you can try Arava or Imuran. And then of course there are biologicals. If the Tramadol isn't helping your pain, you might need to find a doctor willing to give you something stronger until your pain is under control. Unfortunately finding the right meds can be a long trial and error process, sometimes finding the right doctor can be a long trial and error process too.
One more thing....keep in mind you may have more than one disease. In addition to the RA I have fibromyalgia and degenerative disc disease, so I have back pain that is horrible (thanks to the degenerate discs and the sensitivity of the fibro) and doesn't "fit" with RA.
I also agree with everything else that has been said. And I too have fibromyalgia and degenerative disc disease and lots of trouble sleeping. Are you taking a biologic (Humira or Remicade)? That really helped me to bring the pain down. I also use injectable methotrexate at the highest dose which is a big help and it doesn't upset my stomach.
A couple of other things that helped me was taking Ambien once in a while when I had too many restless night. A good nights sleep can really help as you know. And Lyrica helps my fibromyalgia pain, althought I don't like taking it, I recently have given in and it does help a lot.
A RD that you like, can talke to and can trust makes all the difference. I currently live in Santa Fe NM and there are only 2 RD's here-neither of them recommended. I sure do miss my San Francisco RD!!
Hang in there, it will get better.
As for RA presenting symmetrically, there really is no cookie cutter case of it that adheres to diagnosis "guidelines." I absolutely have RA and it has never been symmetrical. Your dry eyes and mouth also tell me you should get checked for Sjogren's Syndrome.
Best wishes to you.
AS the others said you need to go back to another rheumatoligist, it could be another form of athritis, so many can mimic RA. meme I can only echo what others say in that there is no checklist for RA. Autoimmune diseases are sneaky...
Number one on your list should be finding a dr. If it is Ra, you will have it for life. And you will have good periods and bad periods. You HAVE to have a dr. who you can have a partnership with. Distance is a factor, but it shouldn't be the deciding factor. I sit in the waiting room with people who drive 3+hrs to see my RD. A good dr. is invaluable-and can not only be joint saving, but life saving.
I know you guys are probably tired of me singing my docs praises, but I couldn't be happier with my "team". That is what you need-a good team. If you have a bad flare and can't make the longer drive to your RD, you primary care should be able to see you, talk to your RD, and they come to a decision together. Does you reg. dr. have any reccomendations RD wise? Maybe somebody he has worked with in the past?
Really, I feel like I have a giant safety net when it comes to my medical team. Granted, it's a HUGE net at this point, but I've had RA since I was a teen. You wouldn't take your car to a mechanic that you didn't trust...why your body???
Janicer,
When I was first diagnosed with RA, my pain wasn't symmetrical either. I also didn't always experience swelling with my pain. Actually, I had very little swelling. As the disease progressed, so did my symptoms. During my initial diagnosis, my RD ran an Anti-CCP. I noticed you didn't list that test. You might ask your "new" RD to run one. It's highly specific for RA.
In the beginning, all my inflammatory markers were elevated. Since then, though, I have had flares when CRP and Sed Rate were within normal range. Luckily, my RD treats me based on my symptoms too, not just my test ranges. I know how frustrating it is when you see the normal range when you feel bad. I have also had elevated ranges when I felt fine. I think I've gotten to the point now where I listen to my body, not the lab results.
I used to take the therapeutic dose of Ibuprofen when my RA started, but found it hurt my stomach too. I tried Celebrex but it did nothing for me. I ended up with Relafen. It doesn't hurt my stomach like the Ibuprofen did and it works well for me. Keep trying different NSAIDs until you find one that's right for you.
I also agree with others that you definitely need to find an RD that you like and trust.
Hope you feel better soon.
Thank all of you for the support and advice. I now have an appt with a new rheumatologist about 60 miles away. Don't know much about him but he can't be worse than what I have. I will let you know how it turns out. Appt is 5/5/10. It does sound like RA to me too. I am glad you are going to try a new Dr. Would you consider adding a biologic to the MTX? Also there are at least a dozen NSAIDs, keep trying until you find one you can tolerate.
ps
Protonix works way better for me than Prilosec.
At this point I am willing to try anything that makes sense. I am very frightened of the side effects of some of the medications but I am also frightened of the disease I already have. I try to stay up to date on medications, their effectiveness, trials and side effects. Sometimes it is a bad thing because it contributes to the fear but it also allows me to have an intelligent conversation with a doctor about the risks and benefits. Unfortunately my pain level keeps my frustration level very low and I sometimes don't have the patience I should have to listen and try things. I am working on it though and joining this forum was a first step in having a sounding board.
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