Coping with MPA

[Foggy56]

Hi, I am a 60 year old female and it was confirmed 2 years ago and I've been treated for MPA. I have now been told that it is in remission and I have been off medication now for 2 moths. However, since coming off my treatment, my knee joints are aching and I am wakened most nights with pain in my shoulders. I also have suffered a severe case of Shingles which has now left me with terrible nerve pain which I now take Pregabalin to try and control. I am not sure if this medication is causing depression but I feel so low at times. I work 24 hrs a week in an office but feel I can no longer work as trying to juggle work and doing housework is leaving me fatigued and no time for any pastimes. I often question myself thinking I am just lazy and beat myself up about it. I also have problems with my memory and cannot retain information very well unless I really concentrae. I wonder if anybody else feels this way and what they do to help themselves. I am considering resigning from my job but obviously financially it may not be possible but I feel I now need time for myself. What makes things worse is that I look well and my employer doesn't realises how fatigued I am and the pain I suffer with my joints and nerve pain, as I always try to remain smiling and try to do my job without messing up. Hope somebody here can give me some advise that can help me.

[tiachibird]

I was diagnosed 12 months ago and I am still on medication. What you are saying does not sound like remission to me. I would be asking for blood test etc and to see Rheumy.

[Foggy56 in reply to tiachibird]

Hi, Tiachibird thanks for your reply. I have been to a Rheumatologist in January and he said he wanted to wait to see how things progressed before giving me anything. I have to go back in 5 months. I have an appointment to see my specialist in March so hopefully he will be able to prescribe something to help.

[tiachibird in reply to Foggy56]

My lung and kidneys are now scarred because of delays, I would be ringing my consultants secretary for urgent appt if it was me.

[Suzym2u Moderator Vasculitis UK]

I would question if you are in remission, MPA is extremely rare and it is essential you are seen by doctors who have experience and knowledge. Maybe contact the VUK helpline for advice, either by email or phone. Thus is the link.. vasculitis.org.uk/helpline

[Foggy56 in reply to Suzym2u]

Thanks for the link will try the helpline

[Macedon]

I was diagnosed 11 years ago with MPA and have severe kidney damage as a result, along with lung scarring, I have also had a heart attack with subsequent stent inserted. Fortunately I have been in a 'controlled' remission for some time now. My primary care physician is my nephrologist who keeps me on a fairly small dose of drugs -ie. pred (5mg) Imuran (100mg) plus a few other drugs for AF and other minor problems.I suggest you speak to your doctor(s) to see whether a small maintenance medication regime would be of benefit. Good luck. Nick (Australia)

[metalback]

I've had MPA for 9 years and only recently come off the immune suppressant drug I've been in remission most of that time. I'm still on Pred 5mg. From what you describe it sounds like the disease is still active. Is the consultant experienced in treating MPA. Where abouts are you as there are many consultants to whom you could be referred, who are. I would be very worried having to wait so long to be seen and would ask urgently for an appointment and full bloods to be done to check your kidneys.

As to work, I can understand how you are feeling but if the MPA isn't under control then you will feel rubbish. Don't do anything drastic as many people do work with vasculitis with help. As you've had the disease 2 years the Equality Act applies and your employer should make reasonable adjustments for you.

good luck

[Foggy56 in reply to metalback]

Hi, thanks for taking the time to reply. I live in Scotland and my doctor at hospital does specialise in Vasculitis. I will be visiting him in 2 weeks time so I will let him know my concerns. As for my rheumatologist I don't have much faith in him.

[Suzym2u Moderator Vasculitis UK in reply to metalback]

If you call the VUK helpline you can speak to Lynn. She also lives in Scotland and will help if she can

[Tony-LakeDistrict]

Hi I've had MPA for 10 years,

went into what is called remission 5 months ago, still on Mycophenolate, & will be for perhaps the next 4 or 5 years, dosage over that time dropping

Going back in time, I had shoulder & hip pain caused by low kidney function, down to 14, just a thought.

Also Necrosis can be caused by hi doses of Pred over a period of time

Shingles, unfortunately due to the immune suppressant, I had it around the neck & behind the ear, I agree not nice at all. I still get the occasional itch ,after 9 years

Depression ! I don't know, I was put on the normal anti depressant by my local Doc, big mistake, I came off them after a week, now you are going to think, this chap is an idiot, but I started to listen to radio 7 as it was then, 4ex as it is now. I found listening to comedy was the best remedy for feeling LOW, please its worth giving it a try

last of all get " Understanding Vasculitis, ", it's something you can show your employer, could help

E-Mail [e-mail]

The trouble with vasculitis is you can look so healthy, but feel so ill, even those closest to you can find it difficult to understand at first.

Make sure your physician is a specialist for Vasculitis, it can make a difference

One more thing, at the hospital ask if you can join Renal Patient View, with this you can keep an eye on your blood results on your computer at home, & make sure you have a bone density check

I wish you all the best

Tony

[Foggy56 in reply to Tony-LakeDistrict]

Hi Tony, thanks for taking the time to reply to me it is most appreciated. I have found your advise very benificial and it's nice to know that people on this forum understand what it's like to live with MPA. I'm glad you mentioned about looking well and people not understanding, this is how I feel and sometimes I think people think I am making it up. I liked your idea about listening to comedy. I have actually been watching a lot of comedies on Netflix which I find have lifted my spirits. They say laughter is the best medicine !! I think I will go and get my bloods checked now before going to hospital next week, that way I will have had the results by then. Take care Tony and thanks again. I hope you continue to remain in remission. Finally, I would like to say, you live in a lovely part of the country and I will be visiting the Lake District next month for a few days, which I am looking forward to.

Regards

Anne