Tysabri and the shingles. Short Story.

[dkakavas]

I have been on Ty for over 5 years now and recently developed the shingles. No bigee in the bigger picture and it happens... (48 yrs. old). However after 6 long months, shingles came back again and in the same area. 2 months after that, it came back again. Each time, my GP put me on an antiviral drug. Ok -- My last visit to my Neuro: He was up to speed on this issue and decided to keep me on antiviral drugs for as long as I am on Ty. His concern: Shingles shouldn't come back again so quickly and he and the team thought with Ty as immune suppressant, they would feel better If I took an antiviral for shingles for as long as I am on Ty. They said it can develop into viral meningitis. Mitigate the risk if you will. No problem.

Question: Anyone else on Ty have serious issues with the shingles?

Note: My older sis who has MS and been on copaxone for 10 years, has a relapse. She is now on Ty and after 2 months, she developed the shingles. Not a bad case Thank God but still. Makes one think...

Everybody enjoy the beautiful day!

---------------------------Short Story that made a lasting impression on me. More so now than ever.

I worked with this old fellow when I was 14 at old lexingtom market in baltimore. He never said a word. I also noticed a tattoo of numbers on his forearm and realized what this was about. One day a young worker came in from the cold and as normal was complaining how cold it was. The old man looked at him and for the only time I can remember said "Aren't you glad you can feel it?". It hit me like a ton of bricks but the other guy made some comments under his breath and went on his way. He didn't get it.

Now 35 years later I say to all of us still struggling, "Aren't we glad we can still feel too?" I sure am...

Make it a great day!!!!

[capitolcarol]

Tysabri and Shingles

Hi, I have been on Tysabri for three years. But, when I got shingles, I had only been on Tysabri for a year, I think. Doctors and others seem to keep saying that we should get a shingles inoculation when we turned 60 and that is what I did. Others have told me after the fact, that their doctors told them not to get the inoculation! I was really pissed. I got it really bad. I was working part-time as a volunteer on a front desk. Of course, my boss had me take leave and to come back afterwards with a doctor's note saying that I was okay. I have heard that people can get shingles again, but I am praying that I don't get shingles again. It's bad enough having MS and chronic back pain from my spinal scoliosis and spinal stenosis. It's hard some days, but I keep telling myself that I know people that have it a lot worse and should be thankful.

[kmallory1]

Several years ago I was on Tysabri and got shingles. I was put on an anti-viral for a week and taken off Tysabri until it cleared up. It was a minor outbreak and cleared up pretty quickly so I only missed one infusion.

A year later I experienced very sharp pain adjacent to the area where I had shingles. It was eventually diagnosed as shingles with no rash. I did not stop Tysabri because the pain stopped before they figured out what it was.

I got the shingles shot after that and haven’t had any more recurrences. I had to stop Tysabri because I tested as JCV+ and had been on it over 5 years. I’m on Ocrevus now.