I would like to make contact with anyone who has MPA vasculitis. I am finding all of this a little isolating, anyone out there!!

I was diagnosed in November and have tried hard to keep positive..and I am but don't feel anyone 'gets' this disease, not sure I do yet! Don't know what are symptoms of chemo/steroid treatment or ones that will stay in the longer term? Feeling a little dubious about the whole thing and don't want it to get me down....I think I'm a bit cross because my hair has gone very thin and patchy tbh!!!

14 Replies

oldestnewest
  • Hi there

    I have MPA. Diagnosed in 2010 and am now in remission with the help pf Azathioprine.

    So do keep positive. If you find me in the directory you will see my story. How has your MPA presented? Then perhaps I may be able to help you with some of your worries.

    Lynne J

  • Hi "HappyV"

    I don't have MPA but I have WG and they are pretty similar. Trying to keep positive is good, it's just sometimes we can't keep it up. At those times it's best to have a private cry, get it out, and move on - until next time.

    I guess you are taking Cyclophosphamide if you hair has been affected. :Lots of us have had that distressing problem. It may not help at the moment but it will come back as it was before. It won't be overnight, but it will come back.

    Have you looked at the Vasculitis UK website? All the medical information is up-to-date (not like a lot of stuff on the web) and was either written by or verified by an expert consultant in vasculitis. This is the link to the vasculitis pages: vasculitis.org.uk/about-vas...

    Kindest regards. PatriciaAnn

  • That's Ok.

    It took me a while at first. If you want to send a private message. You go on to messages on the green bar and go to compose message then on the left type in LynneJ.

    If not just keep on here.

    I will give you a quick run down of my diagnosis.

    I started by having a really bad virus in March 2009 which showed up as a fibrosis of the lung and I completely lost my voice. I then sort of recovered but did loose weight. As I was on a diet at the time I didn't worry about it. Then in the November I started with a sort of dead feeling win my left foot, it spread to my right foot and in March 2010 to my left shoulder. I had lost feeling in my feet and hand as well.

    I was admitted to hospital and they diagnosed MPA (after a lot of blood tests and a kidney biopsy). I was then put on steroids (which gave me extremely hungry, in particular sugar cravings!) Then I had 10 intravenous doses of cyclophosphamide, it should have been 8 but I had a bit of intestinal trouble so they extended it to 10.

    Then the steroids were gradually reduced and the Azathioprine increased.

    And that is where I am currently at.

    The only left overs I have are a bit of fatigue and still have a bit of loss of feeling in my fingers and toes.

    I do consider myself very lucky to have been diagnosed in time and appreciate there are a lot of people worse off than me.

    Have you looked at our website vasculitis.org.uk/ It is a mine of information about the disease and the drugs. Everything you need to know, in fact.

    Do keep in touch and I will help in any way I can. If you prefer to use emails just send me a private message and I will give you my email address.

    There are more of us out there who will probably answer your post as well, so don't feel lonely.

  • Hi Vanessa

    Well done. You will be going on to Facebook next. It is good if you just want a general rant and is a very chatty closed, site.

    It sounds like all the symptoms were part of it. I was the same when I look back. I had 2 bad fainting fits (funnily enough one was in a swimming baths) and I never faint. I think the heat and the chemicals were affecting my lungs.The weight loss was muscle loss with me as well. I guess it takes about a year to get to your kidneys which is when people take it seriously. I don't blame the doctors though as each little thing could be a separate problem in it's own right. My doctors did loads of blood tests so I can't knock them for trying. I just think they didn't know about Vasculitis. They do now!!!!!

    It sounds like you have been diagnosed in time if your kidneys are OK now.

    As far as I know no one can yet tell how it starts. It is the immune system going haywire for some reason. There are theories, and research is being done. But my consultant says it is not something that I had done or could have avoided. I think mine started after the virus maybe the operations started you off. I think if your immune system is overactive maybe having to work harder in the case of a bad virus or op, it has got carried away. A bit of a simplistic way of looking at it I know. But there you go.

    You should start to feel better when the treatment starts working, it is a slow process so don't worry if it is not immediate but you will get there.

    Keep in touch and let us all know how you are getting on.

    Good luck

    Lynne

  • Hi Vanessa! I have MPA too. There are quite a few of us around, so don't feel you are on your own! I was diagnosed in 2003 (after a long period of high stress followed by a persistent virus) and had inadequate treatment (low dose steroids) for several years, even after my kidneys became involved in 2008 (we were living abroad at the time). Once back in the UK I had a kidney biopsy in 2009 and began the usual hit it hard course of treatment (cyclophosphamide and high dose steroids). At this point I felt dire - really shattered and ill. This proved to be the effect of the drugs, rather than the illness itself.

    I'm now on mycophenolate mofetil, plus low dose steroids, and have been for almost 2 years. Everything is fine and I am well looked after by my consultant in Nottingham. My GP knows nothing about vasculitis though. I think this is a common case scenario.

    The hair thinning is normal (unfortunately!) but it will improve once the drugs are reduced, so take heart. As to anyone 'getting' this disease, you are right, most people don't, and you will find you are constantly answering the question, 'what is it that you've got, again?'. Trouble is, we all look so well! Just keep explaining and, above all, read a lot about it on the vasculitis uk website so that you become your own expert. Don't let it get you down, it will get better, this feeling of being confused and annoyed by the whole thing. Just make sure you have the best health care and then paste on the smile!

    Have you got a support group near you that you can join? Then you will meet other people with the same illness who understand what you are going through. I don't know where you live but there is likely to be one near you. Again, check the local support groups section on the vasculitis uk website.

    Good luck, Vanessa. Do ask if there is anything specific you need to know.

    Ayla

  • Hi Vanessa

    I also have MPA and was diagnosed in May 2012. I can only reiterate what has been said above. Learn as much about this disease as you can, as the doctors do not always understand what we go through. The best place for this is the Vasculitis UK website and Health unlocked. This way you wont feel alone. Once you start treatment it becomes very difficult to distinguish whether your symptoms are due to the illness or the side effects of the treatment. I think sometimes the high dose steriods also make it difficult to stay positive, but this improves as the dosage is reduced.

    Good luck

    Mooka

  • Hi Vanessa sorry to hear you have been unwell. I didn't feel good after I had finished my course of cyclophosphomide even though my blood results were showing near normal. I have since transferred my care to Addenbrookes and have started Rituximab. It's a long, slow road that we have to travel. Don't give up hope that you will have a better quality of life and don't just accept it if the docs tell you otherwise.

    Best wishes

    Jackie

  • Hi Vanessa

    Happy to speak to you whenever you wish. I was being treated by renal doctors at my local hospital. Addenbrookes has a specialist clinic and they are much more knowledgable about vasculitis and are more concerned about any side effects/infections I may have. You seem to have found yourself a good consultant which is good news.

    Good luck with your chemo, I hope it sorts your kidney function out.

    Speak soon

    Jackie

  • Hi. I have Wegeners and it's much the same as MPA. My story on how I was diagnosed is on my blog under Essex Jill. Stay positive and feel free to ask any questions you are worried about on this site. We are all here to help you feel less alone and afraid.

    I still after 13 years of being diagnosed write all my questions down when I visit the Consultant and then come out feeling less confused and more in control of my condition.

    Sending you my best wishes

    Jill x

  • Hi 'Happy V'....I am so sorry you too are going through this journey with vasculitis - but you are not alone as I found out when contacting Stuart Grange/Vasculitis UK way back 6 yrs ago. John and Susan Mills are a lifeline to our group not just with the personal support but the fund raising and the gifts from it to medical research and to the raising of increasing knowledge of this obscure disease to the medical profession....the whole team on Vasc/UK are brilliant (most of whom are sufferers or wives/husbands/partners) I have GPA (WG) and am now on Mycophenolate Mofetil/Steroids etc and I was angry for some time for not being treated correctly/appropiately until John Mills sent me in the right direction to a vasculitis team in Birmingham via my GP. Well despite all subsequent problems I am alive and so glad to be part of these specialised groups for their support (if I need it) but most importantly for the input of people and their own problems with this disease and the wonderful responses they get from this group. I do think it helps very much when one is feeling terribly isolated and misunderstood. It is not a 'nice disease at the end of the day and quite scary'. Take care and hope you feel better soon...medication does take some time. Love S&J (latter's my sweet dog)

  • Hi Vanessa

    Glad you are getting the right treatment but sorry you don't feel well. You will soon. The high dose steroids make you hyper at first. I couldn't sleep at all......I was pacing around in the hospital all night... they ended up giving me sleeping pills!!!!!! I think if I hadn't got numb feet I would have been running as well!!!!!!

    Have you checked out this part of the site for local support groups?

    vasculitis.org.uk/about/fin...

    To all who have GP's who don't understand...have you asked Susan to send them a Routemap..... I took one to my GP's and even though they are usually trainees that I see they all now seem to understand and always take me seriously.

    Just a thought.

  • Hi,

    I too have MPA I was diagnosed in April 2008 . I wondered if some of it was the menopause too but then after repeated red eyes , a crazy rash and aching joints. acute backache and with blood in my urine I just couldn't carry on. I was admitted to hospital and it took about 2 weeks to get the diagnosis of vasculitis with acute renal failure. I had the same treatment as you- steroids ,cyclophosphamide and even plasma exchange transfusion as my creatinine was over 600 and I found it hard going and really scary as my daughters were just teenagers. However after a shaky 18 months or so things are really positive now. It took a year to get the dose of Azathioprine right for maintenance and I has a couple of relapses until that happened .I had to go back on steroids for a short while for both of these . I too didn't sleep well on them but they did the trick and got all the inflammation (that MPA causes in the blood vessels ) under control very quickly. My advice is to take one day at a time ,stop thinking that you should be rushing around .It will take time to feel okay again but if you listen to your consultant and get the rest that you need to recover. You will get there . I was able to return to work part time after 6 months and live a normal life except for taking the necessary medication and being aware to get back to the consultant if I am worried about how I am feeling. Time is a great healer it was all very sudden and I felt quite overwhelmed at the seriousness of it at times. The GP admits that vasculitis is rare but because of having me as a patient he was able to diagnose someone else and get her into hospital quickly. He admits that I probably know more about it that he does. So do get reading about it. As for as I know they really don't know what causes it except there is a suspicion over pesticides. I get treatment in the Northwest of England at Preston and have a good renal consultant. So good care isn't just at Addenbrookes but if you are not happy then the support groups can be helpful but beware that some people are really ill who attend and I found that scary too. Vasculitis UK are a really good support and have lots of useful information on their site . I have to explain about vasculitis to those who have never heard about it. I didn't know it existed until I got it . I am just so greatful that there are great specialist doctors out there to help or I wouldn't be here writing this ! Thinking of you. Maggie20

  • My hair grew normally again after a few months and at one year was just like before I was ill so thin hair is only a temporary feature ! Maggie20

  • My hairdresser has an autoimmune disease, and has had similar drugs to mine. She has been a wonderful support! She says that the hair follicles are damaged by the drugs ( the body doesn't find hair that important, so it is one of the first things to go if you are under stress) and take time to recover when you stop the chemo ones. So the first hair that grows back may be different, but will gradually recover and go back to normal. I have about an inch of fine hair that has grown back under the horrid dry wispy stuff that the methotrexate gave me. By cutting it carefully she has managed to make my hair look thicker and better than it was only a few weeks ago! And she thinks it will improve further.... So good luck, it will get better as you do, I hope.

You may also like...