Try not to get too frightened!

Dear all, I'm UK-based. I had a diagnosis of MPA renal vasculitis nearly 3 years ago, admittedly, caught very early; I was treated according to the current protocol (cyclophosphamide; rituximab 2x; couple hits of high-dose steroids, then stop) followed by MMF (I don't tolerate Aza; this is next-best option for me & because of danger of kidney involvement, methotrexate not a runner.)

Initially, I practically scared myself witless having read loads about it, then calmed down & just plain listened to the wonderful people who treat me. The side-effects to MMF are annoying but mostly tolerable (it's the other wear & tear stuff that is a real nuisance; here, I thought I was 'immortal'--Ha!). My daughter-in-law's Mother unfortunately had a diagnosis too late; her symptoms masked by her husband's ill-health, till it was too late & she passed away just before Christmas which really hammered home the point that Vasculitis can be fatal unless taken seriously. It was no one's fault here, I hasten to add. Her Drs & health care professionals in LA were brilliant; it was just too late! And I was grateful all over again for my early diagnosis (which was partly due to my really wonderful GP who wasn't happy with my 'random symptoms' which included higher than normal BP & an odd creatinine spike so sent me to a kidney specialist) and for the fantastic care I've received at the hands of the NHS.

My recent bloods indicate that I am well & truly in remission & my dosage of MMF will be decreased to half what it is in May. It may stay that way, who knows? But I'm armed with enough 'tools' like what to look for & when to alert my docs and that is a great help!

But too, remember that it's important to stay as positive as possible; if there is a Vasculitis Support group, one that meets face-to-face every so often, it is Very, very helpful. I know that being in an echo chamber can sometimes be even more frightening; this is a weird disease since it's so random & just lands.

And on we go.

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  • Thank you for your positive post. Like you I have a lovely GP who realised that I needed to see a consultant asap. The consultant did many many tests to confirm her diagnosis. I have been on mmf for 22 months and hope to reduce the dosage when I next see her in April. I am glad that I am not the only one to have annoying side effects with it. Good luck for the future

  • I too was diagnosed with MPA Renal just over a year ago, and is has been a scary roller coaster ride. Your post has helped me to feel more positive.

  • Dear tiachibird, keep hanging in there. It is all pretty scary, t'is true, especially the 'blast of reality' that yes, 'I [we] are made of all-too-mortal-flesh'. I'm glad my post gave you a boost. As I said, full marks too, to my wonderful medical peeps!

  • During my diagnosis of Wegeners/GPA I used to search the web and terrify myself. I now have the vasculitis UK support page and leave the web searches alone. I found that I would bring certain symptoms on just by reading of them, a kind of self fulfilling prophecy if you will.

    It took the doctor and specialists 9 years to diagnose me so you can imagine how many symptoms I had looked up. Luckily, or unluckily ( depends of how one one views it) I have Crohn's and the treatment is near as damn it the same as for vasculitis. Steroids and immunosuppressive drugs. It was that treatment that probably saved me from the worst ravages of this disease but it certainly didn't help in the diagnosis as the drugs masked many of the blood markers. It was a particularly bad rigor episode and bleeding from my lungs that finally got me a diagnosis.

    I am stable right now though still ANCA positive. I am just waiting for the first cyclophosphamide as I had surgery on my spine just this January and am waiting to be fully healed prior to that

    Good luck my friend. Keep up the good fight

  • Jools52, my fiancé was diagnosed with Anca Vasculitis MPO 3 years ago and has CKD due to the disease. He is taking Azathrirone and fortunately it is keeping him stable. Question, how does one know if they are still Anca positive? And what does that even mean exactly? Also does testing for the MPO levels have any bearing on whether th disease is still active? Bx I heard with Anca it's not a good indicator. Did I hear that right?

  • Hi SkinHorse,

    I'm so glad that things are going so well for you. If I was to tell my story it would be a copy of yours.

    I too have MPA and my GP was the one who sent me urgently to a nephrologist because of a peak in the creatinine after a blood test, he even suggested that if I could afford it to pay for a private consultation to get seen as soon as possible, which I did.

    After an urgent biopsy on my kidneys diagnosis was confirmed. My treatment was steroids and at first Azathioprine but that made me extremely sick so it got changed to MMF and i'v been fine on this for just over a year now. GP is saying that I must stay with this treatment until Oct. before any reduction in meds.

    What was the side effects you had with MMF if you don't mind me asking?

    My blood tests too show a marked improvement of creatine and egfr levels so I too am told I'm in remission and leading a normal life at the moment!!

    Sorry to read about your daughter-in-law's mum, my condolences to your family.

    Wishing you well for your future progress.

  • Very very true your comments i was diagnosed with Wengers Vasculitis in Dec 2015 and had a plasma exchange at St James Leeds Renal unit then 5 months of Cyclo.Steroids all the time and Azothi.then i relapsed in Nov 2016 then had Rituximab 2 shots over 2 weeks then went back on Azothi.until recently which has been stopped now and i am due another dosage of Rituximab in June.Doing ok but i do get depressed from time to time and its hard and i agree when and if you can talk to similar it does help because at the end of the day these are the only ones who understand even though i get 110per cent support from my wife who is my rock.

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