Jump to content

Hang onto your hat: Sclero Forums Upgrade May 14-21, 2017!! The Forums will be offline for up to 4 days, and then will return with an entirely new look and feel.


Shingles and Sclero

  • Please log in to reply
7 replies to this topic

#1 wennie



  • Members
  • Pip
  • 3 posts
  • Location:new mexico

Posted 05 May 2009 - 04:52 PM

Hello, just wonder if anyone with sclero has had problems with shingles. I am on Cellcept and I know this lowers your immune system, however I have been suffering with shingles and have been taking Lyrica for the nerve pain. I am going on my 4th month. Ouch. wennie

#2 Jeannie McClelland

Jeannie McClelland

    Senior Gold Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,696 posts
  • Location:in the Rocky Mountains of the USA

Posted 05 May 2009 - 05:06 PM

Hi Wennie,

Welcome to the Forum! I'm really sorry you have shingles. I've had them too and can really sympathize. As if having scleroderma wasn't bad enough, eh? ;)

Have you talked to your doctor about this? Mine prescribed an anti-viral medication and a high-dosage 'blast' of prednisone (because they were too near the eye, apparently) and my shingles cleared up in about 6 weeks or so. I'm also on CellCept and we didn't alter the dosage I was taking.

I hope you'll post often and let us all get to know you. I'd offer you your first official International Scleroderma Network hug (we're a very friendly and supportive group), but I don't want to make your ouchie worse. Will you take a rain check? :)

Warmest wishes,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#3 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,282 posts
  • Location:Minnesota

Posted 06 May 2009 - 04:20 AM

Dear Wennie,

I'm sorry you have shingles, and four months of it, yeowch. As it happens, I'm not aware of any direct correlation between shingles and scleroderma. But bear in mind, I'm not a doctor and I have no medical training at all. Unfortunately shingles is very common in the general population and even more common in people over 60 and anyone on immunosuppressants, such as CellCept.

Have you discussed this with your rheumatologist to see if your treatment plan can be modified until the shingles goes away? See our information on Cellcept.

Also, Jeannie mentioned high dose prednisone, so before you get carried away with the idea of a prednisone burst perhaps helping your problem, please read all our warnings on Prednisone and Scleroderma. You'll see the two don't mix well at all. "Corticosteroids
strongly increase the short-term risk of developing scleroderma renal crisis!" and other adverse events.

Anyway, it's plenty enough to suffer from scleroderma not to mention shingles on top of it. I am sending you virtual warm hugs so they don't exacerbate your pain.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#4 Peggy


    Gold Member

  • Members
  • PipPipPipPipPipPip
  • 633 posts
  • Location:Minnesota

Posted 07 May 2009 - 06:35 AM

I had shingles a couple of years before I got scleroderma or was at least diagnosed with it. I had it in my face, ears, and jaw and it was so very painful. I'm so sorry you are having to suffer with it for 4 months. I was told by my doctor its another autoimmune disease and its no surprise that I had it.

I wish you all the best and I hope you are soon done suffering with them.

Warm hugs,

#5 Webby


    Bronze Member

  • Members
  • PipPip
  • 10 posts

Posted 08 May 2009 - 01:54 AM

Hi, just checked back into this forum after quite a while. The reason I checked back in was to research about sclero and shingles.

My mum has had sclero pretty bad for the last two years. recently she also got shingles in her head and eye. The shingles is going away but she is left with post-herpetic neuralgia and my word it's painful for her. In fact when it's bad I don't think I've ever seen a human being in such pain as what she is in.

She is using gabapentin, lidocaine cream and plenty of prescription pain medications. Mum was on, and has been for the last 18months, CellCept. I can't help but feel that may have a part to play ... but it's benefits have great in other areas though.

Can you share any advice on things you have done or learnt about having shingles/neuralgia and sclero? I know she would appreciate any suggestions you may have.

#6 debonair susie

debonair susie

    Platinum Member

  • ISN Support Specialists
  • PipPipPipPipPipPipPipPipPipPip
  • 1,624 posts
  • Location:(United States)

Posted 08 May 2009 - 05:58 AM


I really feel bad for you!
As Jeannie mentioned, Scleroderma is bad enough, but adding Shingles... you poor thing!

At the onset of Sclero, I know how the nerve endings (at the surface) caused great pain for me.

I will keep my fingers crossed that you are able to find a way to do away with further pain via the shingles very soon.
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)

#7 jefa


    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,284 posts
  • Location:Scotland

Posted 08 May 2009 - 06:52 PM

If you are looking for reliable resources in your search for information on topics not specifically related to scleroderma, please note our list of Top Notch Medical Websites on our Researching the Internet link from our Main Medical page. In addition to this list of reliable web sources, this page, Googling for a Diagnosis? Medical Web Resources and Warnings, contains information on fraudulent information on the internet.
Warm wishes,

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#8 wennie



  • Topic Starter
  • Members
  • Pip
  • 3 posts
  • Location:new mexico

Posted 09 May 2009 - 06:42 AM

Hey everyone, thank you for your warm responses. I went back to my rheumatologist and I can't come off Cellcept because of my lungs, I'm too young for the shingles shot, I have a lot of scarring and another spot cropped up on my arm, I am on zovirax but Im going on valtrax since the other has failed, she also mentioned getting a nerve block for the nerve roots that are bothering my breathing in my ribcage. Big no for prednisone, for me anyway, and also increased Lyrica to max dosage of 600mg per day. What a mess, but Im rolling with it a day at a time, this too shall pass (like a kidney stone) again thanks for the help.

Warm hugs back at you