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Arthritis with all common blood tests negative?

Discussion in 'Connective Tissue Disorders/Ehlers-Danlos Syndrome' started by Vojta, Oct 19, 2016.

  1. Vojta

    Vojta Senior Member

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    Czech Republic
    Is development of arthritis something common for people with ME/CFS? I developed joint pain after 5 years of ME/CFS like illnes when I was treated by antibiotics for suspected and probably wrongly diagnosed lyme disease. Repeated western blot and immunoblot negative, and years of antibiotics had no effect, not even herx.

    Problem is there is damage to all of my joints now but all common tests for arthritis like ESR, CRP, RF, anti-CCP are negative, I don't have swelling. Only rheumatologist I saw didn't care at all.

    After I developed this problem I took antibiotics again because I had nothing else and minocylcline stopped acute joint pain during first month and after 4 months when I stoped because development of other new problems, only joint paint was significantly improved symptom and it stayed for almost 6 months without any treatment. Now the joint pain and loss of cartillage got acutely worse again.

    It seems no one is willing to treat me for this because I have negative tests. Although I read that it is possible to diagnose and treat arthritis even when all tests are negative.

    Anybody have experience with this or any advice. I can barely move around house because of joint pain and it is progressive.
     
    Last edited: Oct 19, 2016
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  2. Old Bones

    Old Bones Senior Member

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    Hello @Vojta ,

    I'm sorry to hear you are struggling with joint pain. ME/CFS on its own is bad enough. Although I can't say whether arthritis is common for people with ME/CFS, I have both diagnoses. For me, the arthritic symptoms started suddenly (approximately 20 years post-ME). I went to bed one night feeling "normal for me", and awoke the next morning so stiff, and in so much pain, I could barely get out of bed. My eventual diagnosis -- rheumatoid arthritis.

    My situation is a little bit different from yours in that I am positive anti-CCP and HLA-B27. But, I am aware of a condition called seronegative arthritis. Here's one website that describes it quite well: https://www.rheumatoidarthritis.org/ra/types/seronegative/

    Like you, I don't have joint swelling. Unfortunately, your experience with the rheumatologist is not unique. The first one I saw wasn't prepared to treat me, beyond pain killers, until there was visible damage on x-ray. It seems you've already reached that point, since you mentioned loss of cartilage. Has that been confirmed by x-ray? Based on the article linked, that alone can be enough for a diagnosis.

    Osteoarthritis is also an option. Again, ideas are changing, and it is now recognized that OA (originally referred to as "wear and tear" arthritis) also involves inflammation, although it can be too low to show up on blood tests, despite causing symptoms. Before my diagnosis, I had the idea that Rheumatoid Arthritis was bad, Osteoarthritis not so bad. Now I realize that both can involve significant pain and disability.

    From what I understand, the strategy for handling arthritis has changed, or is changing, with respect to treatment. The more recent approach is to medicate early before the damage is done. That's what happened with me. My general practitioner prescribed Methotrexate when I lost the use of my hands (about 10 months after my symptoms started). I was later referred to a more proactive rheumatologist who is supportive with the "treat early" approach. Would it be possible in the Czech Republic to get a referral to a second rheumatologist?

    If I'm interpreting your comments correctly, it seems your joints felt better while taking the minocycline. I found that interesting, since I have been aware that some doctors prescribe antibiotics for arthritis. So I did a search, and found this link: http://www.rheumatology.org/I-Am-A/Patient-Caregiver/Treatments/Minocycline-Minocin

    You've probably done your own internet investigation, and found similar information. If it were me, I'd try to find a more progressive doctor -- either primary care, or rheumatologist. Perhaps a test prescription of a DMARD (disease modifying drug) would help to make the diagnosis. If it helps, great. If not, at least you'll have another piece of the puzzle. In Canada, Methotrexate is the first DMARD usually tried. I was initially terrified at the thought of being prescribed a chemotherapy drug. But, I've been taking it for seven years now, with no side effects. The improvement was very rapid. With the exception of bi-monthly blood tests to ensure the drug isn't causing harm, I rarely think about my arthritis these days.

    Best wishes, and good luck finding help.
     
    Last edited: Oct 19, 2016
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  3. Vojta

    Vojta Senior Member

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    Czech Republic
    Thank you for sharing you experience @Old Bones .

    This rheumatologist only did some kind of light version o xray test for osteoporosis which I have but mild. I have to look for another doctor but there is no good one around here. I decided to try to go to orthopedist first for assesment of possible damage so I have evidence of something going on and when they will reject to treat me I can send official complains or sue them.

    All of my joints feel and sound like two rocks rubbing together and sometimes get even blocked. So I suppose damage there could be visible on x-ray or MRI. It affects absolutely all joints from cracking bones in ear to tailbaone.

    I pointed the fact about minocycline to all doctors I saw but was completely ignored, told that it's just placebo, or that I shouldn't take it. I can't take minocycline anymore anyway because neuro side effects.

    I got only small dose of prednison (2,5mg once a day) from my immunologist which I'm supposed to take with mino but I have to take it without it and it seems that it improves joint pain already after two days. Problem is I think it makes worse my muscle pain (fibromyalgia) and I have supressed immune system already with low leukocytes already so I'm afraid it will re-activate all chronic infections.

    Maybe it's all from some kind of uknown infection but my current goal is to get Rituximab which could put ME and arthritis into remission together.
     
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  4. Old Bones

    Old Bones Senior Member

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    Hi @Vojta ,

    Reading your posts reminds me of one of the most stressful times in my life, at least from a medical perspective -- wondering how much damage might be occurring while waiting to get the tests I required for a proper diagnosis.
    So, I totally understand your considering an official complaint, or lawsuit. Here in Canada, patients really need a strong advocate in order to be referred to specialists -- something I fortunately have. Your challenge is to find the same, and not knowing the health care system in the Czech Republic, I don't know what to suggest.

    The x-rays I had (twice, actually) would certainly not be called a "light version". Instead, they were full-body scans done at a hospital -- x-rays of every part of my body. They showed widespread osteoarthritis, and mild rheumatoid arthritis damage in only a few joints. Although they provided an excellent "baseline", over the years I've received enough radiation to wonder if cancer is in my future. So, there are pros and cons to every medical decision, it seems. I also have osteoporosis -- common among ME patients, I believe.

    I know what you mean about your joints feeling, and sounding, like "two rocks rubbing together". I had that with my knees, including the locking sensation. After adopting a low-carb autoimmune paleo diet, my knees improved dramatically within a matter of a few weeks. Interestingly, my current (good) rheumatologist originally stated that diet doesn't affect arthritis. A few years later, I was surprised when she reversed her position and stated that rheumatologists now realized their patients were correct about diet making a difference, instead of it being a placebo effect. So, perhaps this is something you could consider. In my experience, doctors (especially the young ones) are starting to listen more to their patients, so perhaps there is hope.

    Like you with your medications, I was concerned that long-term chemo (although low-dose) would adversely affect my immune system. It hasn't -- I still rarely get colds/flu, etc. Although not a goal, I've sometimes thought about Rituximab, wondering if my RA worsens, and it is eventually prescribed, that it might also help my ME. Because, my ME symptoms were much improved for the first few weeks on Methotrexate. Unfortunately, the remission didn't last.

    Again, good luck with your medical journey. For patients like us, what helps one condition harms another, as you have described. Very frustrating, and challenging.
     
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  5. actup

    actup Senior Member

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    @Vojta, I also had difficulty getting an inflammatory arthritis diagnosis while being sero negative. My "cutting edge" Seattle clinic does not allow me/cfs or fibromyalgia patients to be seen in it's rheumatology clinic. I called this department three times over six months to confirm because I was so shocked at this blatant discrimination. I was finally referred to an outside rheumy by my pain clinic MD and was promptly diagnosed with psoriatic arthritis and recently started on methotrexate( four to six months to evaluate efficacy).

    I mention this because it usually takes a rheumatologist to put together psoriasis and asymmetrical joint pain and swelling for a diagnosis. The dermatologist at my clinic who diagnosed my psoriasis did not make any connection with the arthritis. Unfortunately so much damage has already occurred. Early treatment is important. If you have any psoriasis in addition to arthritis this diagnosis may be worth consideration.
     
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  6. Paralee

    Paralee Senior Member

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    @Votja , sorry, but I can't help mention pseudo gout as a possibility, also B6 toxicity. Probably not what you are having trouble with, but I am (maybe) so I thought I'd throw it out there. Good luck
     
  7. MissCB

    MissCB

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    I, too, have pretty severe arthritis with blood tests all negative including RA factor and inflammation markers. A CT scan of my SC joint just showed "bone thickening" and I have lost a great deal of ROM due to this. Now my SI joint is very visibly swollen too with no known cause. Taking SAM E has helped with the pain. I know you said yours isn't visible but just wanted to let you know that's helped me.

    Also, before going gluten free many years ago all my joints ached-especially my fingers and low back. After about 6 months on the diet I realized this was completely gone.

    Hope this helps!
     
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