My MPA Story

[LynneJ]

I have just read the Question what kind of Vasculitis have I? It sounded a lot like my own experience but I would not like to say it is the same diagnosis as each individual is different. Anyway I was inspired to tell my story in case it may help someone a little as I have been very lucky as I realise reading other cases.

In March 2009 I had a virus with which I had a chest infection and lost my voice for about 6 weeks. I went to ENT for tests and then was referred to chest consultant who diagnosed Pulmonary Fibrosis and Lymphadenopathy.

I seemed to recover with antibiotics although I did lose my appetite (no bad thing I thought as I was on a diet anyway) but it turned out to be muscle loss in my legs and left arm.

Then in November 2009 I developed numbness in my right foot and a patch of redness on the right ankle. I went to Physio as the doctor thought it might be a sprain. Over two months it became worse and felt really hot and painful, keeping me awake at night.

It then spread to my left foot which became numb and painful. I was getting more and more tired which I put down to not sleeping at night. I had patches of redness on my legs.

My GP ordered blood tests which showed high inflammation markers.

In March 2010 I lost feeling in my left arm but my shoulder was incredibly painful, at which point we panicked and rang the emergency doctor (why does everything happen at night?)

This turned out to be a good thing as I the paramedics said although my heart was OK it might be best to go to hospital as if I kept going back to the GP they would only test one thing at a time and in hospital they would test everything.

I was admitted to the kidney ward as I had blood in the urine and everything is bit of a blur from then on as I had many tests and after three days was moved to the Rheumatology ward and told I had Microscopic Polyangitis and this was a rare and serious condition. I was given a leaflet to read but could not take it in. I stayed in for 10 days and was given Prednisolone and various other things. The funny thing was as the medication started to work I kept getting involuntary twitches in my muscles.

I was then discharged and booked in for a kidney biopsy which confirmed the vasculitis. I had nerve conduction test which revealed a lot of nerve damage to my left hand and feet.

I then had 10 pulses of cyclophosphomide which I had every two weeks as a day case. It was originally to be 8 but I suffered from a bout of diarrhoea 2 hours after every meal but after the 2 extra doses of cyclo it stopped. Lasting until August 2010

I then went on to Prednisolone and Azathioprine. Gradually reducing the Predisnolone and increasing the Azathioprine until finally in March 2011 I finished the Predisnolone. Since then I have had trouble with certain counts in my bloods being above or below range (not sure what they mean) but I have been to see a haematologist and she said it was due to the medication. My consultants disagree about the amount of Azathioprine I should be taking and at my next appointment the rheumatologist will discuss it with me. I am also having a second Dexa test before I see her.

Apart from this I have been steadily improving, not falling asleep in the day time and having much more refreshing sleeps at night although I still wake up about 3 times but am able to go straight back to sleep whereas I used to have tea, a rich tea biscuit and paracetamols before I could settle. Although I still have a sort of numb ,pins and needles feeling in my feet and they go into cramp when cold, I have regained the use of my left hand with a bit of pins and needles still left. (I had completely lost the use of my two forefingers and thumb when the vasculitis was at its worst).

On looking back I see I have improved a lot although it doesn’t seem so at the time. I am in a much better place now mentally and physically and ready to find out more about the illness.

I only found this site a few weeks ago but it has helped already knowing other people have the same silly niggling symptoms that the doctors are not interested in such as the lumps on elbows and the lack of concentration, being unable to read or watch TV. I do see an acupuncturist and this has helped. It is traditional acupuncture which treats the whole and has kept me sane! I did see him before the diagnosis and checked with the rheumatologist, she said it would not cure the Vasculitis but if it made me feel better she was happy for me to continue.

Thanks and good luck to you all.

[patsy]

Hi nice to hear from you, I too was a while before being diagnosed, Mgp said I had pneaumonia and prescribed antibiotics, I got no better I was suffering for weeks, I eventually got taken into hospital after attending a/e by then I was nearly a gonner. . Transferred to intensive care in Leeds and thank God was ddiagnosed. GPs know little obout this illness. maybe its time they took a few lessons.

[John_Mills Volunteer in reply to patsy]

You are so right Patsy raising awareness is so important. Vuk are taking names and addresses of consultants/GP's so we can we can send them all the hard copy Spring newsletter due out in 2weeks. Hope you are keeping ok too? All the best Susan

[StephanieDiane in reply to John_Mills]

Hi

Could you please send a copy to my GP as he had never heard of Vasculitis MPA untill he met me, how do we give you his address

[John_Mills Volunteer in reply to StephanieDiane]

Sent you a private message

[John_Mills Volunteer]

Hello Hatti, we have read your blog above. Thank you for sharing it with us. Hope you are still keeping Ok and it is interesting to read your account regarding acupuncture. We know other people who have this and they also feel the benefits.

My husband John has WG. (GPA) .

take care Susan

[StephanieDiane]

Hi Hatti,

I have MPA and your symptoms mirror mine, with red patch, nerve damage, coughing up blood. Trouble was we were in France living and they were treating me for a lung infection for over a year. Then my husband brought me back to Scotland thank God. Then every took off with a lung biopsy, Kidney biopsy. that was 18 months ago and I am feeling better. At least I can walk now.

[LynneJ Vasculitis UK Volunteer in reply to StephanieDiane]

Hi Lady C

Nice to hear from someone with MPA.

My problems seem minor compared to other people and I realise how lucky I have been to feel a lot better after 2 years.

Did you also have nerve damage in your feet? I am walking OK but still get cramp and pain in feet when cold or hot. It is a difficult to describe feeling on the top of my feet that is there all the time but I have learned to put it to the back of my mind mostly with painkillers. It is amazing how the body adjusts to things and you find ways to cope. I just wish I could know the mechanics of it and feel then I could figure out how best to deal with it without painkillers. My consultant just says it may never get better but does not say what is wrong. My left hand has recovered a great deal and I can even type again so why should my feet not recover? It is not as far as my toes. Feels like small stones underneath and wrapped in cling film on the top! Weird. I do my physio exercises like a good girl every day! Will try again with the consultant when I see her in May.

[StephanieDiane]

Hi Hattie,

Ido have nerve damage in my feet,I saw a specialist and he did the tests,it is in both big toe's but my left foot is the worst avery sharp pain,coming up through my toes,I do find walking a problem none of my flat shoes let me walk with out pain, so I have to wear my old trainers which help, but I was told it may never get better ,as nerves take longer to heal then muscles, and the specialist said it wasn't bad enough for him to any thing,so just have to carry on. Hope you get help.

[Rod-J]

Hi everyone, I’m new here but great that there’s a place to discuss these problems.

This is all very interesting reading for me. Here’s my story in case it helps anyone.

I was first diagnosed with MPA 30 years ago at Hammersmith Hospital when I was 16. I believe it was triggered by a severe sore throat (not confirmed) but early symptoms were random joint pains lasting 24 hrs each, large rashes, small red spots, blood shot eyes. Treatment back then was oral Cyclophosphamide and Prednisolone. followed by Azathioprine (Aza). Although I recovered, this left me with high blood pressure and renal damage. Following 2 or 3 relapses, every time I came off or reduced Aza, my Kidneys eventually failed at 24. I eventually had a successful transplant and then took Aza + other immunosuppressives for the transplant. 22 years later, still on Aza and (now) Tacrolimus, everything has been fine. However, recent bouts of gout plus the concern with skin issues associated with Aza have prompted the doctors to take me off Aza. After all this time, more than 20 years, I have become ANCA positive again. (All tests before on record show ANCA negative). They tell me my ANCA level is so low I shouldn’t worry (22->32). I’m hoping the Tacrolimus will prevent any return of the vasculitis. Strangely they also prescribed Hydroxychloroquine, but I’m struggling to understand why as I can find no evidence that this is useful for MPA.

Good Health Everyone.

[LynneJ Vasculitis UK Volunteer]

Hi Rod-J

Welcome to the group. What a very interesting story. I have not heard these drugs personally but if you would like to post this as a new blog on the site I am sure there will be someone to help you.

Lynne