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04-02-2012, 02:38 PM   #1
KellyMom
 
Join Date: Mar 2012
Location: Boston, MA
Shingles?

Anyone have them since Crohn's diagnosis? I had burning chest pain last night, long story short went in this a.m. to get it checked since it is persisting and she thinks it is the onset of shingles. It is not heart pain, it is skin/nerve pain like a sunburn or brush burn with random bee sting pains. I am on anti-viral meds to try to prevent bad blistering/rash but I have never had this and I am still not sure if it is indeed shingles. I guess compromised immune system/extreme stress brings it on so...yeah. Both of those things are definitely me right now There goes our Easter weekend plans. Bummed.
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Living in the 'burbs of Boston
Mama of two tiny humans
Crohn's Dx, March 2012
Terminal Illeum thus far...
Prilosec 1/day
Pentasa 2/3x day
Still trying to make sense of all the supplement options
Hating my guts currently
04-02-2012, 06:13 PM   #2
ChefShazzy
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Location: Pointe Claire, Quebec
Hi KM!

I had shingles recently! I'm JUST now getting over my shingle pain/itching... It first showed up about month ago, and I had the same symptoms - the 'bee sting' jabbing pains, the constant aching... the first couple of days I was really sore, and then a rash showed up. The doc prescribed me Famciclovir on the day the rash appeared, and it took about 10 days to scab. Very painful, sometimes itchy and no amount of scratching will soothe it. Lots of waking up at night. So annoying!!!! I feel for you... I hope it gets out of the way quickly!!!

Funny, because back then I had been commenting to my coworkers (who were sick with colds at the time), that I hadn't caught their cold and I was surprised... So when I felt achy, I thought it was the cold finally hitting me, but no... Shingles!! Weird how my immune system totally ignored their cold and hit me with that instead.
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-Sharon
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Diagnosis: Crohn's Disease (May 2007)
Meds: Double-dose of Remicade, every 6 weeks
*I'm going to start saying I'm in REMISSION now! Three years since my last hospitalization!*
04-02-2012, 06:16 PM   #3
KellyMom
 
Join Date: Mar 2012
Location: Boston, MA
ChefShazzy,
Thanks!! I am so sorry you had it too. I am in the bee sting/achy/fluish stage. I have two small kids so I am thinking lifting them on that side is soon not going to be an option once I am itchy and blistery. They started me on meds today, even though I don't have the rash yet. Maybe it will be mild since they caught it so early? Here's hoping! Thanks for your reply!
04-26-2012, 10:51 AM   #4
outlier
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i had shingle in December. Were either of you able to get the vaccine? My doctors are unsure because it's a live vaccine and I'm on humira.
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Diagnosed: Crohn's Oct '09
Extraintestinal: scleritis May '08, GERD Aug '09, ankylosing spondylitis Feb '10
Current Meds: Humira, Asacol, Dexilant, domperidone, Tramadol and a whole lot of vitamins
No more sulfasalazine, Methotrexate, Xibrom, Pred Forte and Iron
04-26-2012, 04:17 PM   #5
marjory2020
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Join Date: Apr 2012
So is one's likelihood of getting Shingles increased by Crohn's? I have never had them myself, even though I was officially diagnosed 4 years back... If there's a causal link between the two, I'd love to hear more!
04-26-2012, 06:15 PM   #6
ChefShazzy
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Location: Pointe Claire, Quebec
Outlier; the vaccine was never offered to me, and I didn't know about it at the time... If it's a live vaccine, I don't think it would be good for us on Humira.

Marjory; I don't think it's necessarily Crohn's increasing the likelihood of shingles... It has to do more with the immune-suppressing meds we tend to be on. I think. I don't know this for sure.
04-27-2012, 12:51 PM   #7
outlier
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yes chefshazzy it's not the crohn's but the meds to treat the crohn's.
01-21-2013, 03:28 PM   #8
SarahC
 
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Join Date: Mar 2012
Location: Co. Louth, Ireland
Hey guys! Currently being kept in hospital for a week for shingles!
Everything symptom wise and treatment wise written here :
http://ibdelemental.blogspot.ie/2013...l-way.html?m=1

Hope peeps find it informative & maybe a little amusing. (:
04-22-2013, 11:42 AM   #9
T.A.R.D.I.S.girl
 
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I'm at the end of my shingles. It was horrible! You always hear how painful it is, but you have no idea until you get it! Mine was at my bra line so I thought it was just a rash. When the symptoms started I didn't know what was going on, the urgent care PA told me I had the virus that was going around and to, "suck it up". And that's a quote. So I sucked it up for four days and ended up in the ER! I also had a deep sinus infection, a UTI, and they found a cyst on my ovary. So in the end I'm glad that I went there instead, but I still can't believe she said that to me! Hope your feeling better soon. I'd love to tell you it will be fine, but honestly it's going to suck for a while! LoL
04-22-2013, 12:04 PM   #10
nogutsnoglory
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I have had shingles twice since a CD diagnosis and never had them before. They are a little stingy and pimply and were on one side of my back. They weren't nearly as painful as the commercials make them out to be. I suppose the drug company just wants to push the vaccine. I am not saying shingles were pleasant but they weren't horrible when I got them and hopefully never will have them again.
04-22-2013, 06:29 PM   #11
JustAYoungLad
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Join Date: Sep 2012
Location: UK
I had Shingles on the right hand side of my stomach when my I was on prednisolone for too long at a high dosage. Horrible

Found it very hard to sleep or have any clothing touch my chest.

Just took a long time for it all to heal and for the sensation to go back to normal.
05-30-2016, 04:32 AM   #12
Sihon
 
Join Date: May 2016
Location: Malta
My dad has been diagnosed with crohn's disease for about 5 years now. He is on Humira (we call it infliximeb here) and a concoction of meds. He was in remission for a while and this year he got sick with the shingles. His shingles are very aggresive and the rash goes around the left side of his belt area all the way to the middle of his back. While the actual rash is healing, his recovery is sooo slow that he is getting a bit depressed. He has been with shingles and in pain for over 2 months now. Anyone has a similar experience? Do you have any idea whether it is normal for the healing process to be this slow?
05-31-2016, 01:19 PM   #13
Lisa
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Sihon- yes, the recovery process from shingles can be very long. Due to nerve involvement, a person can have nerve pain last from weeks to even months or years. The important thing is to get treatment as soon as possible.

A medication used here in the US is called Gabapentin, it is actually usually prescribed for diabetic nerve pain, but will help with the nerve pain from shingles. My husband had a case of shingles a few months ago and has been taking that which helps.

As far as the medication your dad is on - Humira and Infliximab are two different drugs....Humira is a shot while infliximab is an IV infusion.....
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30 plus years and counting with UC/Crohn's!
on remicade since 11/05

While my experiences may not be what everyone has had- I feel it is worthwhile to share any and all experiences that may be beneficial to others.
06-01-2016, 12:43 AM   #14
Sihon
 
Join Date: May 2016
Location: Malta
Many thanks for your reply. My dad is on infliximab (my mistake, I assumed it was the same as humira with a different name)
His progress is very slow. I hope it doesn't take years, I hate seeing him so downcast. As far as medication for shingles, he is only on some pain regulation meds now, I will ask his crohn's doctor whether he can take the meds your husband is on.

thanks once more!
06-03-2016, 06:52 PM   #15
lily3308
 
Join Date: Jul 2015
Location: Arlington, Virginia

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I had shingles exactly a year ago! My doc was very surprised since I was 26 but considering my dumb immune system... It started as a tiny pain/tingle on my right inner elbow, then a tiny pink dot, then more dots, started itching and tingly pain, then bumps all over my arms! They turned into blisters and scabbed up. I had some on my back, too-- there was a big one that left a nice scar I think I had a few on my face, too. I was put on an anti-viral and maybe that helped it clear faster but I don't know. It took awhile for it to all go away. I don't think I have any residual pain.

I would say the tingling sensations lasted the longest but not more than a month or two. the itching was the worst part, though.
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Diagnosed Crohn's 2004 via 11 cm small bowel resection
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Previous: Pentasa
Diet: low fiber, mostly dairy-free
06-03-2016, 07:23 PM   #16
BlueSky
 
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I had shingles too while taking remicade. My doctor said that any latent virus like shingles, herpes, or TB is more likely to surface when you're on biological or immunosuppressive drugs like prednisone.
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