can you have RA with negative blood tests?

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.

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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.

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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

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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

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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?

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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.

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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

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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.

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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.

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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.

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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.

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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 :)

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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......

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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.

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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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Hi there,

I normally post on the GP board, but I also have sero-negative RA. Five years ago I came down with a horrid stomach virus and a couple of weeks later I developed strange pains in my knees to the point that it interferred with my walking. I finally went to my pcp, and he ordered testing which was all normal, gave me a strong NSAID which did nothing and referred me to a rheumatologist. At that point, it was more NSAIDS of different types, nothing working for my pain. Slowly my joint pain increased to my hips and and my fingers began to swell as well. I've never had a postive test, and it has been 5 years now. Five years I've waited for the joint pain to go away, and I've now graduated to Methotrexate. I've also taken Enbrel and Plaquenil along the way.

So yes, you can have negative blood work and still have RA. At one point, I was convinced I didn't need the Methotrexate and stopped taking it. Well...for the first week or so, I felt pretty darn good!..but after that the joint pain returned with a vengence and I developed an awful rash on my face :(

I don't understand how or why I ended up with it and my doctor cannot explain it to me, all he can do is treat my symptoms.

Best wishes!

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I have had RA for almost 43 years. It took 3 years to get a positive RA blood test on me. The Drs. kept testing for Lupus during that time which really scared me as there wasn't the treatment then that is available now. I have been on varying dosages of prednisone for 30 years and have now added the once a month injection Simponi. It has helped. I have knee replacements and reconstructed hands and feet.

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i have been having a severe amount of pain in my hands just like u... about a month ago i went to a rheumatologist and he said i have ehlers danlos syndrome. you should check in to that too. i was originally tested for RA and tested negative.

it has been a while since you posted- what did the other rheumy say? i am going to a geneticist tomorrow for more of an explaination and more info.

hope things are going well

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I could be wronge, but I thought it was only about 2% that won't show a positive test. In fact, I know this is what I have, so once again I will inform my physican that another blood test needs to be done and sent to the lab in Atlanta, Ga. Also, I am going to request to see a doctor that will give me gold shots, because I have had reactions to almost all the medications that they have put me on, and as you might know once you have one reaction it doesn't take very much to trigger another. After almost 15 years of this, I will take my chances with gold shots. I am also leaning toward wanting a doctor to prescribe marijuanan, because no one has ever died from this herb. I know it wouldn't take away all the pain, but it would take the edge off the pain, so I can at least be alittle more active. I have always been very active in my life, so now I feel that I only function on one cylinder instead of eight.
God Bless us all,

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Hi Knitty,
Here is my situation. I have been ill since January of this year and started getting progressively worse as I thought that I had Lyme Disease. I went in to see a private practice physician in May and it was there that he tested me for RA. The testing came back positive. Unfortunately, I had to pay for all of this out of pocket. My liver enzymes were elevated, RBW was low, and it indicated CKD Stage 1. The Lyme testing came back as equivocal (a maybe result). My VA paperwork came in so I was able to see the doctor at the VA. It was here that she told me that I did not have anything (without looking at any of the blood work). She did reorder blood tests though. The RF came back as negative, no numerical value as the first test had, Lyme was also negative, FANA was negative, ESR elevated, platelets low, liver enzymes returned to normal, and CKD Stage 2. I injured my knee back in October/November 2008 but it never healed. I was never given a good diagnosis as far as it was concerned. I have horrible joint pain and have done some research on Lupus and it appears that I have it, however, the FANA testing came back negative so I am not sure what is going on. I just recently got offered a job so I am going to go in to see the Rheumy like the original doctor ordered and go from there.

I do have a concern as I do not accept blood and/or blood products, so that can hamper my treatment. I am 36 with 4 younger children so I will do whatever I can to help me tolerate the pains that I am having.

Also to answer your question, I have read up on RA, as being a RN I like to educate myself, and you can still test negative, but the diagnosis is based on many things, such as the x-ray or MRI and your physical symptoms. Good luck in getting your diagnosis :)

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I also developed symptoms of RA after pneumonia almost 4 years ago. The first rheumatologist did not treat me aggresively and said it wasnt ra because I was sere neg. I spent almost a year getting rapidly worse. I could hardly walk the pain in my knees was so bad. After I switched Drs. my new Dr. ordered new xrays which showed severe damage to my knees and wrists. I had a biopsy on my wrist which showed RA. I love my new rheumatologist she listens to me and is very aggressive in trying to get the ra under control. I am now on actemra as I have not responded well to anything else yet. Next week we double the dose so hopefully that will work!!

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