Hi all. I had shingles on my R thigh in 2 dermatomes. It felt just like bad paresthesias so I was surprised when the lesions broke out.

You can use topical steroids to prevent scarring but I don't know if they even let Tysabri patients have topical steroids.

And, yes, you can spread the virus to anyone who never had chicken pox but not easily. Just keep the lesions covered.

Best to you,
ANN

I don't have much advice for you as I have never had shingles. However, my MS hug gets real nervy and the pain is horrible. They liken that pain to shingles. Therefore, many hugs for you and I hope you start feeling better soon. (Of note, when my hug is causing nerve pain I find ice helps tremendous in dealing with the pain. You may try some by your armpit and see if that helps.)

Let us know how you are doing.:hug:

I had shingles three years ago, from hip to foot. I could barely walk and they were looking for another cause, but finally the medics took me to the ER for the 3rd time and Dr. Chadwick figured it out (he is the best at dx). Valtrex fixed it but I felt someone was sawing off my leg. I think I got it from taking Hydrea, which is chemo for polycythemia Vera. It let the chicken pox virus loose.

But Sally, please explain what it means that MS and Shingles come from the same Herpes virus. Now that is one I have NOT heard. Is that a new theory or an old one?

I have been having spasticity in that leg, in the same calf where it happened, and in the foot, but it is not as painful as Shingles, which was as bad as childbirth.

In the hospital I was in the same bed as the one where my husband died two months later on January 6, 2009. I had no idea what that room would mean to me. I slept in a bed next to his for twelve nights, through Christmas and until the day he died. I am glad I had the opportunity to sleep in that room....I noticed that it had an extra bed when I was there three nights with the Shingles. I had to use a walker for two months after the Shingles, just was getting over it when he died.

That's a very old theory, Mariel, but I think, since we MSers are usually plagued by all the illnesses caused by the same herpes virus, it still holds a good argument..:)

Thanks everyone for the good wishes. I had a horrible reaction to Valtrex. By the 3rd day I could hardly urinate (really painful having a full bladder that can't release--I'm sure MS patients with neurogenic bladders know about that!) and I felt like I was going to jump out of my skin. The doctor said stop taking it. After it got out of my system I could urinate again...yeah!! And then weirdly I wasn't depressed anymore (I think that is a side effect too).

But then the shingles started coming back. Ugh. So I had to call the doc on Sunday and was prescribed Famvir, another anti-viral. It's drying up the shingles like the Valtrex did and it is far more tolerable--vice grip headaches is the only real problem but I can tough that out for a week.

I get Tysabri in 2 weeks so I need to get this straightened out! The doc said it was likely stress that caused it. And there is a lot of that. My husband had emergency back surgery 3 weeks ago from a severe herniated disc and the pain is gone but he now has serious drop foot that may never go away. The doc just can't give an answer. :( His two teenagers moved in with us full time a few months ago because their mom basically abandoned them. So they are still damaged and depressed. And I had lots of big important work deadlines to meet this fall. So taa-daaaa! Shingles for the first time.

Glad you found a better drug, Natalie. I wasn't depressed on Valtrex, possibly because it felt so good to have the pain be going away. That WAS the worst pain there is, in my experience. Puts everything in perspective.

Okay, this is the never ending case of shingles and I'm getting a little freaked out! I took the new drug and the shingles on my side dried up. A couple of days after stopping the drug a blister popped up on my hand. Several days later one popped up on my knee!

I'm supposed to get Tysabri tomorrow and my GP is still out for the holidays. So I emailed my neuro -- he said it didn't sound like shingles but asked for photos!! Technology is amazing! After seeing them he said "ok, this looks convincing." No Tysabri tomorrow because he said it might be multi-systemic and I have to see the GP as soon as possible and report back.

I'm anxious because I get Tysabri every 8 weeks. I'm worried about what will happen if I go beyond 8 weeks. I'm also panicked the shingles will keep spreading (the Internet is a dangerous place--I had to stop reading about "disseminated shingles in immunocompromised patients."). Ergh......

Has anyone ever had random shingles crop up in other places? Trying to take a deep breath.....

OMG Natalie, how awful. :( So you and Neuro think that TY may be the culprit here, huh? That stinks, since TY is otherwise helping you.:(

I've never heard of this recurring Shingles. I'm going to go read up on it. If you stop the Ty for awhile and take an antiviral, will the shingles eventially subside?

You are in my prayers. I hope you heal soon.:hug:

I saw the GP today. She does not think it's shingles but pustules that could be caused by staph. So I have to wash with Hibiclens for 3 weeks daily and decolonize my nose with antibiotic ointment. But I am good to go on Tysabri for Thurs. Hallelujah!!!!!!!!! :)

I'm glad that things are working out for you Natalie and that you can get your Ty on Thursday.:hug: I hope the infection clears up quickly for you.