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Hello,
I have been treated for two years now by a rheumatologist who says that what I have is aggressive osteoarthritis in my hands, wrists, knees and feet. I am 43 years old. My blood work is negative for RA but over the last 6 months my fingers have begun to look turned out and I have had episcleritis (eye inflammation) twice. Is it possible that the blood work is wrong? I feel like I am just getting worse and there is nothing that can be done.
Mobic Naprosyn Plaquenil Hernia Rheumatoid arthritis Prednisone Osteoarthritis Hiatal hernia Stress Arthritis Aspirin Polyarthritis Ibuprofen Allergies Lortab Ultram Pain Methotrexate Ehlers-Danlos syndrome
Yes you can have RA . It is called sero rheumatoid arthritis. You have all the symptoms and progression but it does not appear in blood tests. This is what happened to me. I have been trreated for 2 1/2 years now and my symptoms are much better.
I have what my rheumatologist calls "SNIP" sero-negative inflammatory polyarthritis. It is treated as agressive osteo. I have no signs of auto-immune disorders, but I do have an hereditary disorder called Ehlers-Danlos Syndrome that causes the type of damage that RA does.
I've had 5 joint replacements so far and am about to have my entire spine fused.
you can get more info at www.ednf.org to see if that might be causing your problems
Thanks for your responses and for the great information. I have made an appointment to see a different rheumatologist in a few weeks for a second opinion. I guess I would just like to feel like everything that can be done is being done. I will let you know what happens.
Knitty
Hi,
I have a similar situation. I'm 64, have had Osteo since I was 50 and around the same time started to have episodes of scleritis. However, all of my tests come out negative. Just last year my Rheum said that I have RA due to symptoms and an MRI which showed tissue erosion. I also have alot of muscle soreness. I'm very confused and have resisted taking medication for the RA. I take Mobic for the Osteo. I also have developed food sensitivities. I keep reading that there seems to be a correlation with digestive problems and joint pain (RA). Do you suffer from food or chemical sensitivities?
I am so glad you brought up food/chemical sensitivities. For a number of years I have had to deal with antibiotic allergies with increasing frequency. In the last two years the same reactions (rash, severe joint pain and fatigue as well as digestive problems) began to happen with certain foods. I am now almost completely vegan with no dairy products whatsoever, no meat and very little processed foods. I don't drink sodas or alcohol and live as much on "whole foods" as possible. I am not sure if I can say for certain that this has helped but my perception is that it has. The food sensitivities seem to be gone as long as I stay within the diet. Of course, I still have joint pain all the time from the arthritis but it is not as bad as when I would get the rash. I take Voltaren for the arthritis as well as Ultram. I do not take any of the RA medications but wonder if they might give me more relief and postpone some of the permanent damage.
RA meds can be very damaging if taken unnecessarily. Connective tissue disorders can cause symptoms identical to RA, so be sure you have checked out all other causes before agreeing to take RA meds. Digestive problems are a big part of some connective tissue disorders as well. I have a hiatal hernia which causes constant reflux. Even proton pump meds taken daily do not always help. I cannot eat any fatty or fried foods without bringing on an attack of IBS, so I avoid many dairy products and anything that is fried.
If your rheumie is seeing substantial tissue erosion, you might want to try RA meds, but make sure that you know exactly what to look for in terms of side effects, and if any of them might be permanent
I realized that I had sensitivities last year. I developed an extreme case of burning mouth. It was so bad that even water hurt. I don't know what triggered it. At the time I was taking mega doses of Omega and Red Yeast Rice for cholesterol. Then I started to get tingling in and outside of my mouth, dizzy, tingling in my body, almost faint when I ate. I've been trying to figure this since then. I saw an Alternative Med Doctor. He suggested that I read a book by Jonathan Brostoff, titled, Food Allergies and Food Intolerance. I just started to read it, it's a little hard to absorb, but there is definitely an association with RA and food intolerances. I'm afraid to take the RA meds and also afraid not to. I'm baffled. Also, my eyes have been through alot due to this problem.
I have non-reactive arthritis. I couldn't understand for the life of me how I could be in so much pain and come up negative for every test. My doctor informed me that it happens to some and we are currently looking for treatment for the arthritis that won't harm my kidneys. I have FSGS and I have to be careful that the pain meds that I take do not put any undue stress on my kidneys or liver. The doctor has suggested a low dose of prednisone and Voltaren gel applied directly to my painful joints. I am going to see her in a couple of weeks to get started.
I have heard about the topical Voltaren. I would like to hear what you think of it after you have tried it. I am curious about whether it really works.
Thanks everyone for your input. I see the new rheumatologist on June 4 and hopefully a new perspective is what is needed to get a handle on this.
I also have FSGS and I cannot take the medications for arthritis due to complications with my kidneys. My nephrologist says that I cannot take Voltaren by mouth, but can use the gel. Being allergic to aspirin, Ibuprofen and Naprosyn is no fun. I cannot take things like Lortab due to it hyping me up and all the other pain meds are so strong they make me nauseous. I take lots of hot soaks and try to keep moving. I hope everything goes well on your doctor visit. I am so wanting to learn how to manage my arthritis and pain without all of the drugs. I will try anything at this point.
MY original rheumatologist looked at my MRI of my neck and thought that I was at least 50 years old (I was only 23 at the time). All of my tests came back negative but she was sure that it was an inflammatory disease. She sent me to a colleague of hers for a second opinion and after more testing they still came back negative. He explained to me how they can be negative but you can still have RA. He first started me on Plaquenil and I showed little improvement. Then we added Enbrel and that gave me more improvement, but still not where I wanted to be. So then we added methotrexate and this is the best I've felt in 2 years. We still need to adjust the dose of the methotrexate cause I am still flaring a lot, but I can't complain to much because I finally feel like I have gotten some of my life back. It was hard loosing almost 2 years of my life. This happened when I was 23-25 years old and that's when I'm supposed to feel great and yet I felt so horrible. As far as the side affects. The worst ones I had was I had some thinning of my hair from the methotrexate and it makes me a little tired. Nothing to major especially compared to the outcome or regaining my life :)
I've had RA for 29 years (diagnosed as JRA, so depending on who you talk to it's still JRA, but I'm 33, so the word Juvinile seems funny). I have NEVER ONCE tested positive for RA. However, look at my joints, x-rays, CT's and MRI's, it's RA. I actually had a new GP walk into the office once and say, "OK, what's going on with you, besides the RA, of course." She new without me saying a word. She was a great GP....I read somewhere (and don't quote me, because I may be completely mis-speaking)but about 20-30 percent of people with RA never have a positive factor. Get that second opinion, but try not to be too disappointed if you still don't really know......
I am so glad I found this discussion. In the past year I have had increasing joint pain in hands and feet and now am having actual changes in the joints. All my bloodwork came back negative and the doctor didn't even do a follow up, just told me everything was negative and left it at that. Well, look at my hands and tell me everything is negative, even the people at work can look at them and tell me something is wrong. After he told me everything was negative I might have believed that I was ok, except that my hands and feet still hurt and my joints are getting bigger and bigger.
I am glad to see you seek second opinion. Anyone with a new or life altering diagnosis, someone not responding to treatment, your physician has offered no treatment or you don't feel something is right...always speak with your Doc about it and get a second opinion.
nlweible
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