PATGW6IMS.

[PATGW6IMS]

For the last five months i have had shingles & have lost four stone,

My Anca Positive Vasculitis seems to be behaving itself.

I wounder if anyone else with vasculitis has had shingles & know how long they are likely to last,many thanks to all who write blogs keep it up Pat Vernalls

[John_Mills Volunteer]

Hi Pat...

So sorry you are suffering from shingles, I believe it is very painful. Does your consultant know you are suffering from shingles at the moment?

if you go to the blog on the 19th September, this blog is by someone who has experienced chicken pox and shingles. Also there is an article in the Autumn newsletter regarding chicken pox and shingles...did you receive a copy? If not I can send you a copy... But I am sure someone will answer your question personally..

[vivdunstan Volunteer in reply to John_Mills]

The article in the newsletter is a copy of my blog entry here. So pretty much the same text. The emphasis of the article is more on chickenpox though, because that can kill adults, especially immunosuppressed ones, and is easy to catch, either from others with chickenpox, or from people with shingles. Too often people assume chickenpox is a mild childhood disease. It kills.

[vivdunstan Volunteer]

I had shingles in March 2010, just before my PhD viva - probably a combination of stress, and the drugs immunosuppressing me.

Mine didn't go on as long as yours. I dread to think what having it for months would be like.

Are you getting help from the medical professionals? They may want to adjust the immunosuppressive drugs you are on for example. I was told that the doctors would not adjust my drugs, unless the shingles went for my eye or head. My cerebral vasculitis is an extremely aggressive case though.

As Susan said I have blogged here about chickenpox and shingles - lucky me ended up with both of them while on immunosuppressive treatment. I wouldn't be surprised if I get shingles again in future. But hopefully not for a while.

[Hidden]

Hi Pat,

So sorry you are suffering and for such a long time too.! I had a very bad bout of shingles in May of this year which took a couple of months to go. (I stll have the scars). They were very painful but I was given medication to help relieve my symptoms. I also had to up my dosage of prednisalone for at least 2 weeks.

Hope you are feeling better soon.

Best wishes - Sylvia

[Tony-LakeDistrict]

I have had Microscopic polyangiitis 4 years now, 3 months in while talking to my specialist, shingles made itself known, it took about 5 minutes to become full blown,around one side of my kneck no warning !!!!! .

I was prescribed GABAPENTIN.

when the hits came I found cold water directley on the pain most helpfull. but the best tip I can give you is, every morning I had a shower, & for a good five minutes, I ran the shower full blast on the area, ,after this the area seemed numb, & I could be pain free for 3 or 4 hours.

After about 2 years it faded very much into the background due I think to a lower dose of Immune suppressant. It can still niggle in the background, but is no problem any more

Good luck Tony

[PATGW6IMS in reply to Tony-LakeDistrict]

Hi Tony i am on nine gabopentine a day now,i was on six before the shingles.for the nerve unds in my feet.I have four cold showers in the night every night that helps a lot.Since being diognosed with the vasculitis i was also diagnosed with diabetis type two i take eight tablets a day plus 15 units of insulin every day.i also have asbestosis so the steroids help with my breathing thanks for the advise Pat.

To help the GW6IMS IS MY AMATEUR RADIO CALL SIGN.

[Tony-LakeDistrict in reply to PATGW6IMS]

Hi Pat

, I also had diabetis, insulin controlled. It was steroid induced diabetis , when I came off the steroid the diabetis disappeared within a month, no problem since. Hope you will be able to lower your steroid intake soon. Everything seems to have side affects, doesn`t it

Tony