Have many symptoms of vasculitis but a tone of blood tests are normal!!

Hi ... Im am jack .. i have a transplant kidney surgery in 2009 and i take cellcept and prednisolon 40 mg every day for it ... since 3 month ago i have neuropathy consists of my legs and hands so i visit many doctors ... neurologist ,cardiologist!,nephrologist but everything was ok while i knew i have a trouble in my body ... after one month i had loss weight about 8 kg !! I can see vessels that i couldnt see it before ! And pain in my muscles and back ...after read a post about vasculitis i suspicious to have it so i visited a reumatologist and she sent me for blood tests ... i did it for 8 times !! But everything was ok ...my esr and crp was neg all time but for one time my wbs was high but very mild high ... my reumatologist say because of my blood test results i dont have vasculitis but every day i have awful pain and newly mild pain in abdominal ... what can i do?? Can prednisolon effects on blood test results ??!!

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  • Hi Alexwwww. My understanding is that taking prednisolone (which is an anti inflammatory drug) will mask the inflammatory markers in a blood test. Also Celcept is an imunosupressant drug which is often used as a maintenance drug to keep vasculitis in remission. Did your blood tests include a test for the ANCA antibody. This antibody is associated with some of the main type of vasculitis. However diagnosis is normally confirmed through a biopsy of the affected tissue or organ. Vasculitis can often effect the kidneys. The Vasculitis UK website provides a lot of useful information. Chris

  • Thanks . Yeah i know some of vasculitis can effect on kidney but my kidney markers are well ... and there isnt any sign of complications in .... im on stress because every day is awful for me ... and doctors say and laugh !!😏😏...no you havent vasculitis !! Every time i say yo them may i have lupos _vasculitis or another autoimmune diseases they say no because your ESr & CRP is good !!

  • I am in waiting for the result of ANCA

  • 40% of people with active ANCA Associated Vasculitis test negative for c-ANCA. Many don't display elevated ESR or CRP too. Blood tests alone are not a definitive way to diagnose vasculitis.

  • This is really interesting- apart from ANCA always positive- other tests are mostly normal but I feel awful. Makes me feel I'm imagining it!

  • Hi,

    Are you in the UK?

    How long have you been on 40mg of prednisolone as that's a high dose which is only usually used in the short term. Why did you require a kidney transplant?

    There are lots of causes of peripheral neuropathy and weight loss, Vasculitis is one of the rarer diseases to cause that.

    40mg of prednisolone would mask the blood results of many autoimmune diseases. Are you diabetic?

  • I had a kidney transplant because i had hematchori when i was 14 ! And after one year dialises i did a kidney transplant surgery and for it i take prednisolon _cellcept_syclosporin

    But the dosage of these drugs are not very high (except prednisolon)

    I have awful and terrible situation with abdominal and body pain these days ... but my inflammatory markers are so good!! My kidney markers ( creatinine,urea good) .... can ct scan show the inflammatory of vessels??

  • If you have been on 40mg of prednisolone since 2009 then it may be the symptoms you are experiencing can be related to that.

    Have you ever had a DEXA scan to check for oesteoporosis which may be causing your pain?

    Any auto immune disease is unlikely on those types of medications as they are the ones used to treat Vasculitis.

    Are you in the UK?

  • No im in india now!! I have taken prednisolon since 2009 dosage 5 mg ... but since two month rised to 10mg and since 1 week ago 40 mg because of my pain !!! But when i took 10 mg prednisolon my esr &crp was good !

  • I really sympathise with you! I have Churg Strauss syndrome. When I feel really bad- blood tests are all normal! So frustrating and doesn't make sense to me!

  • Yeah .... sorry 😏😏😏

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