Vasculitis MPA

[Randell0317]

Hi, I am a 22 year old female, I was recently hospitalized for two weeks in September 2017 I was spitting up lots of blood from my lungs, I had a a tub put down my throat so they can figure why I was bleeding. But I entered the hospital beacuse my feet and hands where numb tingly with purple spots. While I was in the hospital they did a tissue biopsy and soon I found out I had vasculitis MPA. I’m on a lot of different medicines. I went through 4 infusions of ritaxun I’m also on prednisone and azathiorphin and gabapentin. I still don’t feel any better. I still have the numbness and tingly in my feet and hands. It’s been two months since I been taking these meds. I’m also experiencing a lot of confusion , sadness , anexity . It’s like I’m talking to myself allday in my head. I can’t stop thinking about my disease. It’s like I can’t think normal anymore. It’s hard to even watch tv be around people. I’m constantly crying and in worry. Im very scared. I feel like I’m doomed and I’m so young. Anybody have any suggestions? Yo why I’m feeling like this?

[Tony-LakeDistrict]

Hi , I've had MPA for 10 years now, & can promise things will get better, You are at the low point at the moment. Vasculitis can have many different effects, one of the most notable is extreme fatigue, & of course the different medications don't help

This is going to sound silly, but don't fight it, live through it, as they say go with the flow.

Things that helped me. Ask your specialist to put you on Patient View, this enables you to see your own blood results on your own computer. sometimes you will think , nothing is happening, I found it a relief to see with my own eyes ,that there was improvement. I still use it

I found sleep to be elusive, but I had many hours of comedy tapes, they helped to pass the night away. I know some people use talking books, anything to relax the old grey matter.

I'll stop now as I do tend to blaver on

Best Wishes Tony

[Randell0317 in reply to Tony-LakeDistrict]

Thank you so much. Made me feel better knowing I’m not the only one. I was beginning to feel like I’m going crazy. I use to love taki naps throughout the day but now I can be lucky if I get 4 hours of sleep. I have extreme insomnia they put me on sleep medicine to help but that barley helps.

[Hidden]

Hi,

Are you in the U.K.?

In many ways being diagnosed with a chronic, rare, remitting, relapsing disease is like a form of bereavement and we mourn the life we had before. It's a lot to take it and come to terms with, it's not an overnight process. The feelings you are describing are normal in this type of situation, I would be concerned if you you weren't feeling confused or anxious.

The things that helped me the most was seeing a clinical psychologist, she really helped me come to terms with ill health and move on. I also took control of everything that I could control such as trying to help myself as much as I could with a healthy diet and daily walk etc as well as becoming an expert in my own disease and being an active partner in my care.

It sounds like you have peripheral neuropathy which can be a problem with MPA. Once damaged the peripheral nerves can take a while to heal/ re generate so it may be many months before the numbness and tingling improves. Have you had your Vit D and B12 levels checked as they can be deficient in patients with auto immune disease and make peripheral neuropathy symptoms worse.

I would be careful with sleeping pills as they are very habit forming and patients can become addicted after a few weeks of use. The best way to avoid that is only take one every 3rd night.

Most of all be kind to yourself, it's difficult to be diagnosed with a rare disease in particular as other people don't understand. You will get through this but may have to admit to your Dr's how you are feeling and ask for some help to come to terms with things.

[lou1972 in reply to Hidden]

Yes. I am in the Uk. I am at my lowest at the moment. My legs are so painful with sores amd this rash all over my feet. I always have it from the knees down. Some days is so painful to walk and I cant stand the heat. I sit outside in the evenings to keep cool and we all know what the UK weather is like at the minute. I cant tolerate fabric around my legs. I have not slept in my bed for over a month as get too restless and this then disturbs my husband.

I sit downstairs and thats how I fall asleep everynight. Sometimes with the fan on or putting my feet in cold water to cool my legs to stop the itching. But it now appears i coyld have damaged my nerve endings in my feet becuase I put them in cold water so much.

I have had unbelievable pain in my toes and under my feet. I am with my dermatology dept at the local hospital but they took ages to diagnose me and they are not Vasculitis specialist. I need to see a specialist now to try and get this control better as keeps coming and going every 3-4 months and I will have nothing left of my legs at this rate.

My legs are a mess. I want to be normal again

[Hidden in reply to lou1972]

Hi Lou,

Do you have HSP?

If you phone or e mail the Vasculitis UK Helpline then either John or myself can hopefully help.

vasculitis.org.uk/helpline

[lou1972 in reply to Hidden]

Thank you

[wobblypat in reply to lou1972]

I sympathise completely. I have CNS Vasculitis and suffer many of the feelings you have, even though many of my symptoms are different. After 18 months of hospitalisation, operations and unpleasant treatment my husband and I took stock of my situation and worked out how to f move forward. We shed many tears, but got to grips with the situation. I still have

Low moments and I still wish I was normal but life is much better.

Knowing you have a very rare disease does not help!

[karat]

Hi! I was diagnosed with MPA a few years ago. I had many of these same feelings & treatments. I had the exact bleeding in my lungs as well. I can very much relate! What I can tell you, is that it will definitely get better. This is the low & the recovery from such sickness takes quite a bit to get the medicines quite right & your body feeling normal again. I had several months of the painful tingling in my feet & hands as well..I am on infusions if retuximab twice a year & can thankfully say I almost never get the tingly sensation anymore. I feel like myself again & my blood tests continue to come back with great results.

You will get better-continue treatment & try to keep yourself busy/distracted...new series on Netflix, get outside for some sunshine & most importantly try to focus on the positives (:

[StephanieDiane]

Hi l have lived with MPA for seven years now,all your symptom l have also gone through,but things will improve, keep going were all with you.

[gibson100]

Hi

I have been living pretty well wth MPA for the last seven years.

I developed peripheral neuropathy almost immediately after having chemotherapy right back at the beginning.It has been by far the worst and most obvious symptom of MPA .

My advice is get off the Gabapentin as soon as you can.It doesn't really work very well and I found it made me feel all sad and gloomy.I am definitely not that kind of person and those feelings went just as soon as I stopped taking it.

I found the best treatment is learning to use self hypnosis and relaxation techniques to cut the communications between the nerve endings down in your legs and your brain.Pain is a complicated thing but I found this really did and does work.

There are a number of techniques that can be researched online.My fave when the pain was at its worst was to think of a word and colour for the pain and when the painwaves come repeat a little mantra and visualise that colour.Because of the burning sensation I imagined the opposite and used the word ice and a kind of Turqoise colour.

This all sounds a bit hippy dippy but it worked for me and some of the people i have suggested it to.

You might also want to investigate Havening which is a therapy which i also found helpful.

My feeling is the less drugs you have to take the better.

I hope this helps.Let me know if you would like more info.

[Randell0317 in reply to gibson100]

Thank you for the information I appreciate it. When you where taking the gabapentin did it make you spend a lot of time in your head? Like talk to yourself in your head a lot and couldn’t concentrate? And if you don’t mind me asking how long did it take for your nerves to get back to normal in your feet & hands?

[gibson100 in reply to Randell0317]

Yes I think it did.I didn't feel depressed but Im sure it made me quite gloomy.And don't forget that steroids amplify any emotions you have which doesn't help.

Gabapentin is a treatment for epilepsy and is pretty strong medicine so it is not surprising that it messes with one's head.

A lack of focus and concentration are also side and after effects of prednisilone and MMF( which I am guessing you are also on) so those may continue if you stop the Gabapentin.

It is hard for people to appreciate the acute pain that neuropathy can cause.At its peak I likened it having your feet clamped in a vice then having someone stick hot needles in them along with electric shock treatment.I may have had a worse than normal case of neuropathy but I am not sure.hopefully yours is not so bad.

My hands got back to normal fairly soon after doing a lot of hand exercises.

Unfortunately I still have the nerve pain in my feet after 6 years but it is gradually been getting better.I go for lots of walks with my dog to keep the nerves and muscles working.At the beginning I couldmhardly walk at all.

If you are having trouble sleeping try downloading some relaxation recordings and playing them though some comfy headphones.I found that also worked well.

I think the important thing with Vasculitis is to listen to what your body is telling you.Take rest when you need it and don't feel guilty or sad about it.Don't push yourself too hard and gradually things get better.

[Red-head44]

Hello

I've been diagnosed with MPA in March 16. I can relate to being too hot all the time and at the stage you are `i was in hospital for 6 weeks. Everything you describe is 'normal' for this disease and it takes months and months to slowly creep forward. As you are young your husband probably is also confused and frightened. I think it's worse for the person caring for you as they can do nothing to help. Don't worry about lack of sleep at this stage and take your sleep when/where you can get it rather than bothering about whether it is night or day. The pred stops you sleeping. It will also be making you VERY hungry but if you hang on for around an hour the extreme hunger goes, and you won't over eat adding to your problems, but putting on weight is inevitable.

This is a very extreme disease and you will learn loads about your body as you go forward - learn to trust it.

Jx