mpa vasculitis info please!

hello all! I'm fairly new to this site. diagnosed in April of this year with microscopic polyangitis (mpa). i'd like any information with anyone's personal experience with this type of vasculitis. I'm still trying to figure out how this is affecting my life & still trying to learn the most I can about this. I'm still very confused as to all aspects of this.

very long back-story but to make a long story short, I was hospitalized for 9 days with bleeding into my lungs. lost 1/3 of my body's blood, transfusion, many many tests, biopsies, blood transfusion & lots of medication & iv infusions of rituximab...several months later I still experience extreme lethargy & migraines weekly. wondering if this is common or what others experience with their mpa.

thank you for any information!

30 Replies

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  • Hi karat, you have been through a lot - it must have been awfully scary for you. You have said it's only months since this all happened, so it wouldn't be too unexpected for you to be still feeling lethargy, but you are right to ensure you are getting the best level of care, that's very important.

    There is lots of information on the Vasculitis UK about MPA (I have GPA and found the information invaluable for me, my family and GP) They do have a helpline, too.

    It took about 18 months for me to 'wake' from the malaise caused be the illness and treatment. My bloods are now stable and my energy has grown.

    I hope you feel better soon.

  • thanks so much for your reply & support

  • Hi, I was diagnosed in 2010 with MPA. I was the same as you, bleeding in the lungs, kidneys went down to 30%. Hospitalised in 2011 again after a flare.

    Just getting over another flare, So I can sympathise with how you are feeling, and wish you all the best for the future.

  • thank you for your support. hope you're feeling well & get better quick!

  • Hi, I also have MPA (diagnosed in 2012) but it is fair to say experiences with vasculitis can and do vary significantly. In my case it was my kidneys that were affected rather than my lungs. I was treated initially with Cyclophosphamide rather than Rituximab. I have been in drug controlled remission since October 2012 (Mycophenolate). I have fortunately been able to lead a fairly normal life but I do have bouts of fatigue along with headaches. This is sometimes triggered by a virus. Hopefully you will be having regular appointments with your consultant and it is important to let him know exactly what you are experiencing.

  • thank you for your reply & support. in your experience, this fatigue & painful headaches are "normal" mpa type symptoms? what do you do to manage this & to try to lead a normal life? I'm struggling with having any energy & the headaches are almost dibilitating. this had been very difficult & im trying to figure out how I will be able to return to work shortly. I do have my regular appts with several specialists. they don't seem to have a solution for this.

  • Hi Karat,

    Headaches are not a typical symptom of MPA, neither when it is active nor when in remission. I have previously mentioned my headaches to my consultant and whilst he arranged a CT scan of my head it did not reveal anything. You should discuss it with your consultant. Unfortunately being in remission doesn't necessarily mean you feel perfectly normal. Fatigue is commonplace in people living with vasculitis, even when you are in remission. Some people are affected more severely than others. The key is doing what you are able to do without overdoing it and regretting it later.

    Chris

  • thanks! just wish there was a cure for this lethargy I feel. definitely hard to function without the energy to get out of bed.

  • Hi.

    My doughter was diagnosed with MPA 4 years ago.Her lung was full of blood.And she has kidnay bleeding.

    She had headaches.

    These days she is healthy young girl.The best student ang good tenis player.

    She is taking calcort 6mg.

    In the beginning she couldnt walk only 50m.

    She did't go in the school for 1 year.

    Her Hgb. was very low,and she had protein and lots of erytroc.in urine for 1 year.

    I was scared.I couldnt walk, talk, think.I thought it was the end.

    4 years after we are in good health without flare.She lives normal life.

    We know that MPA is always around us.But we are stronger and we will win.

    I wish you the best.Everything will be good.

    Think positive

    Sory my English isnt good

  • so glad to hear your daughter is doing so well! I will stay positive & hopeful that I will soon be as fortunate. thank you!

  • Hi! My wife was dignosed with MPA 16 years ago. The disease has good seasons and bad seasons. As it has good days and bad days. Her debut was with Renal Insufficciency that lead to dyslisis 6 months later. At that time treatment was with cyclophosfamide back then. She had 2 kidney trasplants anf 1 epidsode of pulmonary hemorrhage. Then came rituximab. She got her 3 rd kidney trasplant and since then we had more good days than bad ones. We even have a 4 year old boy: which was told to us was imposible fue to treatmebt with cyclophosfamide. Advice: live day by day and enjoy as much as you can. Good luck!!

  • thanks so much for the reply. sounds like she's been through so much & im really glad to hear she's so well now. gives me hope as well. thank you!

  • Hello . Diet has a lot to do with it. But still working on it. Sry your having to go though this and even though I don't know u, you r not as alone as you feel. I will help as much as I can.

  • thanks very much! what type of diet do you suggest?

  • I have gastric issues that cause me pain when I eat bad (junk food, fast food, unnatural) so I started eating better, I'm still tired but not as bad. On bad days, when I don't want to MAKE anything, I drink organic protein shakes I get at walgreens and eat Kind bars. Might help. Oh, I also drink nothing but water....I miss coffee !

  • thanks for the suggestion. I really do need to eat only fresh foods. so hard to keep up while so low on energy. but I'm at the point about willing to try anything. thank you

  • YW. I have a hard time feeling like it, lots of sandwiches and Kind bars. lol Hang in there!

  • Hi .

    I had M.P.A in 2007. Kidneys 14%, 4 years later up to 43%, now 29% & steady. Lungs damaged but ok.

    Right from the start I had fatigue, I tried to fight it, but it had it's say in everything I tried to do , Eventually I decided to go with the flow, & slowly things have improved.

    Don't worry about the disease.that's the specialists job, Just remember to tell them of anything that concerns you.

    Make sure you have bone density checks, I ended up having 2 new hips & a new shoulder,because of necrosis caused by the steroids.

    As you wll see from other replies, the fatigue is the main way Vasculitis affects you.

    There is no known cause & no cure yet !, But it can be held at bay by immunosuppressants.

    I'm 72, when I look around at others my age, & even though I still have " "Grand Fatigue", my life is just as enjoyable as the ones they have.

    I hope things go well for you soon

    Tony

  • thanks so much for your reply. you feel your immunosuppressants help with fatigue? which are you taking? my dr's are still trying to decide the best route as far as the medications..

    wish I had the perfect answer but it seems such a trial & error with many other side effects.

    glad you're doing well & it's encouraging to hear!

  • Hi again, I'm sorry I think my phrasing was not the best,

    The immunosuppressants, possibly make fatigue worse. You will find the notes for almost every drug you take to treat vasculitis, has the warning " could make you tired " . Even if you were on no drugs you would have the fatigue caused by Vasculitis

    The simple way ," non jargon" to understand Vasculitis is to think that your immune system has gone in reverse, so instead of protecting your organs, it can attack one or more of them. the immunosuppressant Mycophenolate in my case can suppress & hopefully stop the attacks.

    My specialist, right at the start explained to me, at the moment there is no correct treatment, each case was different. He also said, one of his main resources was looking at & listening to the patient

    One resource for you could be Renal Patient View it enables you to view your blood results on your own computer, gives you a feeling of being a little more in control, ask your specialist where to obtain your log in.

    I find that when feeling low or in limbo, comedy helped see me through,

    Sorry I do tend to go on sometimes.

    Hope this helps

    Tony

  • this is helpful! I really do appreciate every bit of it. I'm open to all suggestions & do enjoy the simple explanations also. kinda hard to understand the medical terminology most of the time anyway. thank you again!

  • Hi, I was diagnosed with MPA in June 2014 at the age of 54. i had been exhausted and my urine had been very dark for months but stupidly I didn't consult. When I finally saw my GP, she prescribed blood and urine tests and the results were so worrying that I had to be admitted to hospital here in France where I live immediately. The local hospital discovered partial kidney failure and then sent me to a hospital in Paris for a kidney biopsy. This and other tests revealed ANCA MPA. I was given 2 blood transfusions, then RItuximab drips and cortisone. I had a month of weekly RItuximab drips and then a treatment every 6 months (what they call the maintenance period) to continue until June 2016. I also took 1g of Cortancyl per kg of my weight for a long time, slowly dropping the dose. I now only take Hydrocortisone. I don't know if French protocols are the same as English ones but I feel that I can really trust the team at hospital. I stopped working for a month in the beginning and then started up slowly (I'm self-employed). More than a year on, I feel that I've got a lot of my energy back, and to all intents and purposes, live more or less normally. I'm very careful about what I eat, limiting fat, sugar, and salt, I have a very occasionally glass of red wine. For me, the key period will be when I come to the end of the maintenance period of Rituximab. I dread having a flare but know that this a risk. Psychologically this is difficult and hard not to worry about. My kidneys function but are damaged. I don't want them to be damaged more by a flare. However, I do try to tell myself that worrying won't make the slightest difference and that a positive attitude is vital. I can reassure you that there is a life after MPA, you will recover your energy but be kind to yourself in the meantime and take each day at a time (a cliché but so true).

    All the very best,

    LindainFrance

  • thanks so much! I try to take it day by day but really so eager to regain energy & just to feel the willingness for the effort to get up each morning. seems like the most difficult task as pitty as that seems. altho I am thankful as I'm sure I could have had it much worse. I appreciate your advice & I'll stay positive! thank you

  • my husband was diagnosed in July 2015 with MPA after being hospitalized for 8 days and having a kidney biopsy the following week. He had symptoms for several months before being diagnosed. His kidneys were only functioning at 30%. He was put on prednisone and cyclophosphomide. On August 30, 2015 and on September 1, 2015 was put in CCU because of coughing up blood. The bleeding was coming from the small blood vessels rupturing in his lungs. He was in CCU on the ventilator for 20 days. He lived one week after being taken off the vent. He passed away on September 27, 2015. It was a devistating blow.

  • OMG I am so sorry for your loss. this is horrible to hear such sad news. I feel I have had such similar symptoms which makes this all very frightening. I felt near death often as I first entered that hospital. I am greatful to be alive but your husband is a really great example of how serious this disease really is. again, I am so sorry to hear this & I wish you the best.

  • I am so very sorry to read this rocketmanthib, you do not say where you live, are you here in the UK?

    VUK do have a private bereavement group on Facebook if you would like to talk to others who have lost a family member. There are 36 members in this group.

    Vasculitis , no matter what type should never, ever, be underestimated. My husband John was coughing up blood just before he was diagnosed. It was only because a doctor on duty that day , John was taken to hospital, "thought" it could be Vasculitis (WG) GPA , saved John's life.

    Best wishes

    Susan

  • I live in the USA

  • Hello Karat. I was also diagnosed with MPA in April this year. I do not have any lung problems but do have problems with my kidneys. Like you, I have suffered badly with headaches and fatigue. The headaches have got a lot less severe since I started treatment (8 cycles of Cyclophosphamide and steroids) I am now on Azathiaprine and steroids. I try to eat really well as this makes me feel I am 'doing something' to help and also try to go for a walk most days. I find a 4Head stick really helpful when my head is most painful as I am now really reluctant to take painkillers due to my impaired kidney function. I still struggle to get up in the mornings due to disturbed sleep at night but can now get up at a reasonable time at least some mornings a week! As for returning to work, I hope to do so in January but realise this will have to be on a part-time basis - probably two days a week to start as I cannot guarantee staying awake long enough to do more! Having MPA seems to involve a very steep learning curve and I am slowly coming to the realisation of how much things have changed. From the really helpful posts on this site, I can see that things do generally settle with time and that adjusting to things becomes easier. You have my best wishes.

  • Hi. I was diagnosed with anca+ mpa in February. I know it's very scary. I too had bleeding lungs and kidneys. Hospitalised for 3 weeks and had 7 plasma exchanges. Horrendous headaches, very painful swollen joints, mouth ulcers and tiredness like I've never before experienced. I've recently completed my course of cyclophos, have reduced to 7.5mg of pred. Was then started on Azathioprine but reacted really bad so they had to try me on mycophenolate mofetil (mmf) these are suiting me quite well and my mpa seems to be under control. I'm back at work full time but still tire very quickly. Everyone's experiences are different but most will tell you there is hope. I would say read others stories which will give you a better understanding of what to expect. Vasculitis is a scary disease so it's ok to feel down about it. Look after your body and mind, eat well and more importantly listen to your body. If you feel tired then you MUST rest. If other symptoms appear tell your specialist. This is a great site so make sure you use it. Sending you big hugs xxx

  • thanks so much for your response. almost all sounds very very similar to my situation. I'm not back to full time work yet (although being home with 2 kids is definitely more than a full time job!) but I do hope to return shortly & return to semi- normalcy. I'm just very afraid to have this all return again. I definitely don't want to end up back in the hospital!! appreciate your suggestions & I hope the best for you too!

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