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Remicade and shingles

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Posted 7/16/2013 4:25 PM (GMT 0)
I had my third induction dose of Remicade  last Friday and then Sunday I noticed these red dots on the back of my neck.  I also had a spot on the side of my neck that was starting to swell.  The side of my neck kind of reminded me of cystic acne or something like that. 
 
Of course, me being scared of going on Remicade in the first place, I started to freak out a bit and I made an appointment with my doc (general practicioner) the next day (Monday).  She quickly diagnosed it as shingles and gave me antiviral meds and painkillers and sent me on my way.  Good thing I went in quickly since apparently the antivirals work best if you start them within 72 hours of becoming symptomatic. 
 
Has anyone else had shingles while on Remicade?  Does the fact that we are immune suppressed down the recovery process pretty significantly?  My doctor told me that I probably ended up with shingles because my immune system is weak.  I also learned that people on immunosuppressants apparently can't get the shingles vaccine so that's too bad for me.
 
Anyway... for anyone thinking about going on Remicade, you might want to ask your doc if the shingles vaccine would be a good idea beforehand.  Shingles is no fun.
Posted 7/16/2013 4:36 PM (GMT 0)
I haven't asked about the shingles vaccine, but I was told that I could get flu and pneumonia vaccines while on Remicade (just not the nasal version of the flu vaccine).

My father-in-law had shingles last fall/winter. He was very miserable :( I hope you feel better soon, and I'm so sorry you're dealing with this!
Posted 7/16/2013 4:43 PM (GMT 0)
I actually had shingles right after getting over a flare... no remicade. Of course, I didn't realize what it was until I had it for 2 days and then it was X-mas eve so I didn't get the antiviral.
Posted 7/16/2013 4:51 PM (GMT 0)
I had shingles on my scalp after pred and 6mp combo. It was awful.
Posted 7/16/2013 5:11 PM (GMT 0)
I had shingles while on remicade. One of the gifts of a compromised immune system. That was really painful.
Posted 7/16/2013 5:21 PM (GMT 0)
That's really interesting... after my first Remicade infusion, I developed a red rash on my arms and also a few bumps on the side of my neck the started to swell. Some of them looked a bit like heat rash (that just didn't go away) and some looked more like poison ivy. I saw my GI after a few days and she didn't seem too concerned. I assumed that in my case it wasn't shingles as I didn't receive any treatment. My GI was completely baffled as to what it was as it was a bit late to be an allergic reaction (the rash started 2+ days after the infusion).
Posted 7/16/2013 5:49 PM (GMT 0)
If it was shingles... you would have known. That was two full weeks of the worst pain I have ever experienced, followed by severl more weeks of wierd sensations.
I had the rash on the left side of my stomach wrapping around to the back. Of course, those who have had shingles know the rash isn't the true source of the pain.

I still get wierd tingly electrical shocks if my shirt touches my skin the wrong way.
Posted 7/16/2013 6:57 PM (GMT 0)
Good you went to the doctor and are now on meds to help deal with shingles. I hope you only get it once in your lifetime. I know of some who have had it a few times..yikes.

The shingles vaccine is no guarantee we won't ever get it...it's protective for some, but for others it mayor can at least lessen the symptoms. So, it's a crapshoot basically.

You were on prednisone...are you finally tapered off?

One thing you might consider taking for a while is L-Lysine, 500mg twice a day.  But do the research on it first to see if you want to consider it.

Feel better soon,
q

Posted 7/16/2013 7:02 PM (GMT 0)
I had shingles while on Remicade. I believe it's connected.

Get better soon.
Posted 7/16/2013 7:09 PM (GMT 0)

Andrina said...
I had shingles while on Remicade. I believe it's connected..

Anyone who has had the chicken pox has the virus dormant within them. When the immune system is weakened (Remicade weakens the immune sysyem) the virus can come alive again in the form of shingles. That's why you hear of the elderly mostly coming down with shingles.
Posted 7/17/2013 1:22 PM (GMT 0)
Yeah I have been off of the pred for about a month now. I should have updated my signature block. THanks for the advice on the L-Lysine. I've hard vitamin C (and D perhaps?) might help me get over this quicker. It just itches like hell.

Hey... at least I'm getting to telework this week. :-)
Posted 7/17/2013 1:26 PM (GMT 0)
from what I've heard about shingles. i'd rather be toiling away in a coal mine w/o shingles than telyworking with !
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