WG and shingles

[Keymer71]

I have WG and this week developed a nasty attack of shingles - OUCH! Never knew it could be sooooooo painful! I read that shingles can be more serious and prolonged in patients on mycophenolate. My GP assures me this is not the case. Have any of you had this while on immu-suppressants?

[PatriciaAnn]

Hi Keymer

I had shingles when I was on Cyclo. I haven't heard that it is worse for those of MMF as opposed to any other immuno-suppressants. Best to get treatment within 48 to 72 hours to minimise the problems. I had Aciclivor tabs to start and then Aciclivor cream. I found some comfort is dabbing the affected area with calamine lotion.

PatriciaAnn

[Keymer71 in reply to PatriciaAnn]

Thank you, everyone, for your rapid replies. GP prescribed Aciclivor which I couldn't keep down! The rest of my medications Myco, Prednisolene etc came up as well! GP was called and am given anti-sickness tablets to be placed under the upper-lip! There's no alternative to Aciclivor but thankfully the anti-sickness tabs seem to help! Yes the pain is excruciating and I'm swallowing the maximum dosage of Co-codamol! The information leaflet that comes with Mycophenolate says its more serious, thats where I got it from. Chances of recurring?? Oh no please! Wouldn't wish it on anyone!

[PatriciaAnn in reply to Keymer71]

Hi again Keymer

Didn't the GP prescribe Aciclivor cream if you can't keep the tabs down?

PatriciaAnn

[Keymer71 in reply to PatriciaAnn]

Thanks for asking. No, the GP never mentioned Aciclivor cream. How does this work? Is it applied in the same way as calamine lotion? The chemist suggested the latter when my husband called to pick up the anti-sickness tabs but didn't buy it.

[PatriciaAnn in reply to Keymer71]

it comes in the tiniest of tubes, so a little goes a long way. You just dab it on the spots and the itching bits. I don't know if it is as effective as the tabs but it sure beats nothing.

PatriciaAnn

[vivdunstan Volunteer]

I had shingles in March 2010, just before my PhD viva. I got anti virals quite quickly, though I had trouble initially persuading the out of hours nurse on the phone that it was probably shingles - not something from my _cerebral_ vasculitis! - and that I needed to see a doctor fast. Of course the doctor said "Yes, it looks shingles-y".

In my case it took me about 4 weeks to get over it. I'd had chickenpox in 1998, aged 25, which is much more dangerous for people who are immunosuppressed, because it can kill adults, especially those with poor immune systems. I'd never had chickenpox as a child - wish I had. As an adult with it I was rushed to hospital, and stayed in for a week.

The shingles rash in 2010 was much worse than my chickenpox rash in 1998, even though it was confined to one nerve, albeit running all the way from my waist down my left leg to my toes. The pain was gnawing, feeling as though it was in the bones, and the rash was vicious.

However I escaped without permanent nerve damage, which is the danger with shingles. The best thing you can do is take your anti virals - I assume you have been given some - and the strongest painkillers you can take. In my case that was co-codamol, because I can't take things like aspirin or ibuprofen due to my immunosuppressants. And rest as much as you can.

If you do develop long-term nerve problems, which can happen to even fit and healthy people, not just immunosuppressed people, the GPs can give you nerve killing pain to help. So it isn't all bleak. But your immediate priority is to get through the initial attack.

There is always a risk of shingles recurring, especially in immunosuppressed people. I was told by my consultant afterwards that if it had gone for my head and especially my eyes they'd have admitted me to hospital to keep an eye for me. But my shingles attack was well away from that part of the body.

Good luck!

[vivdunstan Volunteer in reply to vivdunstan]

Oh and forgot to say: when I had my shingles I was on Mycophenolate and Azathioprine. And steroids of course.

[Tony-LakeDistrict]

anyone that has had chickenpox in the past carries dormant shingles, immune-suppressants

can allow it to become active.

I have MPA , and 2 months into treatment, I had shingles around my neck, & you are right it was so painful ,I found having a shower every morning & concentrating the water on the affected area for 10 minutes could minimize or even stop the pain for 2 to 3 hours, sometimes even longer, the effect is to confuse the nerves in the area, so giving some relief.

For the sudden attacks, that if I remember right, I got 3 or 4 time a day, I would splash cold water on my neck this also helped

For me it lasted about 8 or 9 months, even so 6 years on I still get the occasional low level attack, these days a nuisance nothing more & easily dealt with by E45 cream.

Best of luck Tony.

P.S. I found it best to keep the affected area out of the sun

[Moley1]

Not fun. You have my sympathy Keymer 71 and best wishes.

I had shingles around my right hand side of my waist in the early 1990s and would have been on cyclophosphamide. Another very painful bout in Dec 2010 this time around the left side whilst on mycophenolate. I cannot remember what the antiviral medicine was called that I was prescribed (quickly as I knew what was to come!) but know I went through gallons of Calamine lotion which helped cool down the areas and pain killers.