Vasculitis UK
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Prognosis MPA Vasculitis

Hi. I am new here. I was diagnosed in June 2017. I was wondering what is the life expectancy for MPA ( microscopic polyangitis). I keep seeing references to 2 years and 5 years. Is that all that is expected ? Also since my flu jab last week I have been extremely tired and unable to use my excercise bike for more than 5 mins. I had been doing 20. Is this normal?

Thank you.

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Hi Webbyj,

Life expectancy for MPA depends on many things including treatment, time to diagnosis, permanent organ damage and underlying medical conditions etc.

If caught early before permanent end organ damage occurs and treated effectively by an experienced Consultant then life expectancy isn't much different from the norm.

I would be very careful about where you get your information from and only use sights such as Vasculitis UK.

Before the advent of prednisolone and other immunosupressants ANCA associated Vasculitis was fatal but treatment now is better than its ever been.

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Ok that’s reassuring. Thank you 😃

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Hi Webbyj, ref. the flu jab, l had mine a couple of weeks ago and have also been feeling more tired than usual. I haven't mentioned it as yet to my GP as l think it'll sort itself out. Having said that and you being a new Vas. person it wouldn't hurt for you to contact your GP though.

Sally

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Hello Sally,

Thank you for your reply.

I will take your advice and speak to my GP as you suggest, as I struggle to climb the stairs!

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Let us know how you get on please.

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Will do. My next consultant appointment is on 29th November I will post an update then 🤞

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What treatment are you on and do you see a Consultant with Vasculitis experience?

If it's affected your kidneys then that can worsen fatigue. Have you had your Vit D and B12 levels checked as they can both be low in Vasculitis? If you are anaemic that won't help and worth asking if your thyroid function is ok as that can lead to fatigue as well.

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I am on Pregnisolone 5 mg daily, Azathioprone 75 mg, Adcal, Alendronic acid weekly, Bisoprolol and Amlopidine. My thyroid was checked not sure about b12. I am on monthly checks now. Due to go to St Heliers renal unit vasculitis clinic on 25th November so will get more info from them . 😃

Thank you Keyes.

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Were you treated with Cyclophosamide or Rituximab at outset to induce remission?

Have they done a DEXA scan to check your bone density and see if you really need the Alendronic acid?

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Cychlophosamide and prednisolone. No DEXA scan

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I would ask for a DEXA scan as it's good to have a baseline for bone density. As you are now on 5mg of pred the risk of oesteoporosis is greatly reduced and Alendronic acid can have some nasty side effects. You may not actually need it.......

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Ok I will ask for one. My grandmother had osteoporosis so that may be why theynprescibednit.

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I too have MPA but I have had it for may years, well managed by the clinic at Addenbrookes. Tiredness (fatigue) is one of the most trying symptoms from which I suffer. Provided one does not have too much permanent damage prior to diagnosis, I think that with good management, one can expect a fairly normal lifespan. I met a lady last week who has had it for a long time and she has few symptoms, I was a very late diagnosis and do suffer from various symptoms but they are mostly kept reasonably in check. That said, it has been a bit of a life changer for me. You will find help on this site where the volunteers such a Keyes are knowledgeable and helpful. Vasculitis UK support meetings are also very helpful for learning more about your condition and learning from other patients. Good luck.

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Thank you for your reply. I am still struggling to come to terms with this awful disease but am slowing getting there. It’s the tiredness that I find so difficult to cope with. It got worse after my flu jab which was over a week ago. In your experience is this normal?

Many thanks

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I don't think the flu jab has affected me but, we are all different as you will discover. It is a difficult disease to come to terms with and I agree with you about the tiredness which is difficult for other people to understand as we usually look perfectly well. We need to adapt and support one another. Life goes on and you will find new ways to lead a good and happy life even if it is different to before. The main thing is to have a good consultant, it is a rare disease and a good specialist makes all the difference.

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👍

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HI Webbyj. Keep a positive attitude.I was diagnosed 11 years ago with MPA and have severe kidney damage and other organ involvement. With good medical care I have been able to stay in remission for most of this time. Lack of stamina and tiredness are my biggest problems though I try to get on with my life....just have to rest the body when things get too much. You should look forward to a long and fruitful life. All the best.....

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Thank you. That’s very reassuring to hear. 🙂

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Even though I am new to this (January diagnosis), I have read non-stop almost including the most up-to-date clinical information until my eyes hurt. I am glad I did because that is how I got past the awful short life span news. It seems that it depends on: if you were diagnosed before kidney or lung damage (or CNS/heart/other organs) so that you could be quickly treated, how much kidney or lung damage was already done before diagnosed and treated, and if the initial treatment induction did put you into remission. Then, were you/are you carefully watched for any relapse signs - regular testing to be sure kidneys are safe, lungs are good?

Additionally, the treatment has its own set of problems we have to be watching out for, so are you being pro-active to take care of your bones with weight bearing exercise if on Prednisone, and appropriate supplements to help that? And if on another drug, how is that being watched to beware of harmful side effects?

The Vasculitis Foundation support group folks sound like like is alright for the most part once it is being managed. That is what I am hoping for, but I know I have to be ready for this new normal of less energy than ever before and adjust my lifestyle to slow it all down. I think that could be very good for me, actually.

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