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Wegeners and Microscopic polyangitis

Posted , 3 users are following.

bev41634
bev41634

Two years ago I was thought to have Wegeners but after biopsy I was told it was Microscopic polyangitis which is even more rare.  My doctor says he has never had a case of this.  He has no interest in learning about it so when I say I have pins and needles in my back he recommends exercise.  I feel it is the disease.  I do have an excellent neprhologist who has picked up on symptoms that my doctor misses but I get so discouraged.  I don't want to be a hyperchondriac but i do want treatement when possible.  Does anyone here have Microscopic polyangitis and chan share symptoms.  I am in remission with medication but fear triggers as they are unnown

1 like, 5 replies

5 Replies

  • jarvis36927
    jarvis36927 bev41634

    Posted

    I have Microscopic polyangitis. I was diagnosed 8 years ago. I was rushed into hispital with a suspected heart attack. 2 week stay and many specialists resulted in the Above diagnosis. It took two years to get under control and I was on a maintaintence dose of the drugs used to control it. I have just had a relapse and I am back to high doses again. This time round things are different with added pains in my dietery tract. I should have known it was coming on again as the tops of my legs felt as if they where sunburnt. Plus arms sometimes feel sore. Another system is choking somtimes when eating. I read this happens sometimes

    This time I was again rushed to hospital with a suspected heart attack. My wife is know on a mission contacting specialists on the internet. They have all replied and offered to see me. There are a lot of things that can tell you medication needs to be changed. I can give you more details if you want to get back to me.

    • bev41634
      bev41634 jarvis36927

      Posted

      Oh yes, I would like to hear more.  I am sorry that you have had a relapse. My diagnosis was two years ago and I have managed okay but I do have a burning sensation in my back and restless legs.  I am always cold.  Feels like a cold that can't be warmed but then I have night sweats.  Confounds me.  Please let me know about signs that meds need to be changed.  As I said, my family doctor does not know or care to know.  I see a nephrologist as my kidneys are most affect.  I am having ear surgery in two weeks as I have recurrent infections.  Thanks for replying
    • jarvis36927
      jarvis36927 bev41634

      Posted

      Hi Bev. My systems at the moment are aching burning sensations at ths backs of my arms and legs. My chest is sore behind the chest bone. and down the middle of my chest i find it dificult to swollow somtimes.Headaches. Feet and bottom feel sore when standing and sitting.I suppose like having the flue. I keep getting stabbing pains in my chest i have been told is the inflamation. These pains can move from one arm to the next in minutes. Strange sensation. In bed they are sometimes worse. I try not to tuck my feed in tight at the bottom of the bed. Leave the bottom sheets loose. I also am very tired although that could be down to not sleeping well at night. I also have an under electric blanket I leave on low. The meds I am on are Azathioprine 150mg and prednisolone 40mg daily. I use all baby products for hair and bath washing as my skin is sensitive now. I cannot use sun lotions so keep out of the sun. I take pain relief 3 times aday. I have just taken 3 months off on sick, Self employed. As i cannot work with this at the moment. When it is under control again i will be on a smaller dose but you have to get a Rheumatoligist who specialises in this illness as most doctors will only see about 3 cases in their career. Even most Rheumatology doctors wil only come across an handfull of cases. I will send you some names you can contact by E Mail on Sunday. They replied to me within hours. Regards Jarvis
    • bev41634
      bev41634 jarvis36927

      Posted

      Oh Jarvis, I can totally empathize with you.  Sometimes my scalp and face are so sensitive I can't bear to have anything touch me.  Even a pillow hurts. Yesterday I choked on a pill and my day seemed to go downhill after that.  I was exhausted.  Of course I had to take an anti anxiety because I got myself in a state not being able to swallow.  I went to the hospital once but they just said to wait until it passed but it leaves spasms.  I now have something odd with my ear. Often have infection but need surgery in a couple of weeks.  I am sure the surgeon doesn't realize the added stress of this is difficult to handle but I have given up trying to explain symptoms.  Thanks for your response and I am truly sorry you are experiencing this again
  • brandi07352
    brandi07352 bev41634

    Posted

    Hello, my mom was diagnosed with mpa 8 months ago. About 5 years ago her hands would swell and go numb. She went to the doctor thinking it was Carpal tunnel. Doctor told her it wasn't, and that she probably had rheumatoid arthritis. So last may she started spitting up blood went to er and finally a month later was diagnosed with mpa. Her kidneys and lungs were affected. Her treatment consist of prednisone( which she stops in the next month) and imuran. She just started the imuran. Just wondering if you have any information on this disease. Just trying to get a feel of what to except

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