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Posted 10/23/2013 1:35 AM (GMT 0)
Well add something new to the list of problems, I got this really cool looking rash around my chest and back and it turns out to be shingles. Ugggg it really hurts, kinda like a sunburn but awesomer (its a word, I made it up)

Anyone have any experience, I did a search and found lots of info but little support.

Posted 10/23/2013 1:52 AM (GMT 0)
GO get anti viral meds now!! I had shingles 5years ago and did not get the meds quickly so I now have nerve pain .I did not have UC then so you have to get ahead of this turn
Posted 10/23/2013 1:54 AM (GMT 0)
Find a health/naturopath and get them to mix you up a salve to put on the rash. It instantly takes the pain away. Did you get the meds in time?

Mine was on my right butt cheek and front hip and hurt like a beep. Took about two weeks for the scabs to go away. The pain was instantly helped by the compound salve she made for me. Best $20 spent EVER.
Posted 10/23/2013 9:11 AM (GMT 0)
I agree with what's been said. Get on meds now. The chronic nerve pain is awful. Lyrica can help with that but you don't want it to be chronic.
Posted 10/23/2013 12:09 PM (GMT 0)
Meds won't hurt... but when I had shingles I was told that once the rash appears, its too late for the anti-virals and they will be of little effect. Neurontin or some other nerve deadener may help.

As for the rash? That was nothing compared to the nerve pain that I experienced which lasted weeks. I hope that doesn't happen to you, because there was no pain medicine that even slightly alleviated it, and no physical position I could put my body in where I wasn't feeling the pain in my back/kidneys/gut, etc...
Posted 10/23/2013 1:31 PM (GMT 0)
You have a very limited time to get on the meds, although I believe they still work ok if the rash has just recently appeared. If you wait too long the meds will not work and the meds can be extremely effective if you get on them quick enough. Don't delay even one second. You will be miserable indeed, sometimes for the rest of your life, if you do not jump on the meds before nerve damage occurs.
Posted 10/23/2013 1:42 PM (GMT 0)
I will reinforce that you should get the meds. You should know, though, that the antivirals can also cause stomach problems, diarrhea, etc. AND you should also know that you SHOULD NOT take NSAIDs for the pain.
Posted 10/23/2013 2:48 PM (GMT 0)
Oh no...that's horrible you now have this to deal with!!!

Since you know it's shingles, did a doctor diagnose you? Hopefully, he did put on an a herpes antiviral.

I'd suggest you use L-Lysine..do a search for it about dosage.

I've never had them, but if there is a salve you can use, again...do the research.

Hope you get over this quickly....
Take good care, and keep us posted how you're doing for sure!
q
Posted 10/23/2013 2:49 PM (GMT 0)

kazbern said...
I will reinforce that you should get the meds. You should know, though, that the antivirals can also cause stomach problems, diarrhea, etc. AND you should also know that you SHOULD NOT take NSAIDs for the pain.


NSAID will not work for nerve pain anyways, neither does Acetaminophen.

My tummy was being fine when I had the shingles. I was already diagnosed with UC when I got it but I also was in remission thanks to Remicade. By the way, I believe that my shingles were some sort of a side effect by Remicade.
Posted 10/23/2013 2:57 PM (GMT 0)
When I had shingles at age 40 the antivirals helped and I lived on Aleve for the shoulder pain that came with the shingles virus. I had been diagnosed with IBD two years prior and I wasn't adequately medicated for the colon inflammation, but my shingles appeared post-partum and I think I was still in IBD remission from the pregnancy.

Last year I had a HSVI outbreak on my mouth (something I've had since childhood) and I asked for an antiviral to deal with that. My GP prescribed acyclovir, which I took happily, looking forward to a significantly shortened outbreak. The acyclovir gave me terrible upper GI pain and then diarrhea for a week, although it worked like a charm on the blister.

This past summer I had another outbreak on my mouth (thank you, menopause) and I called my GP back. I asked for an antiviral that WOULDN'T give me upper GI pain. Apparently valacyclovir has a lower incidence of GI side effects so I took that. This time I only had 3 days of diarrhea. sigh.

Now I have decided to never use an oral antiviral (unless I get shingles again). Abreve makes a good cream for HSVI outbreaks. I don't know if that would help with the shingles rash.
Posted 10/23/2013 4:46 PM (GMT 0)
Are there any warning signs before the actual rash appears? Everyone seems to say starting the meds after the rash appears means it's too late. So what are the early warning signs?
Posted 10/23/2013 5:24 PM (GMT 0)
For me the first sign that I was getting shingles was an episode of shooting pain that started in my back and went right down my arm. It was almost an electrical shock kind of pain and was clearly nerve related. I was nursing my newborn at 2 in the morning when this happened and I was sure I was dying of a spinal cord tumor, LOL.

The next day I had an itchy and very sore spot right beside my shoulder blade. There was nothing on the skin and I tried rubbing and massage to relieve the itch and ache. This was a Friday.

By Saturday evening I had put two and two together and realized that this pain was herpetic. See, it helps to have a long relationship with the herpes virus! I could recognize it - but there was not a DR to see me until Monday morning.

At that point the rash had just started an my GP confirmed it was shingles. I started the meds later that evening.
Posted 10/23/2013 6:00 PM (GMT 0)
I also had shooting, stabbing pains. It felt like someone had stabbed me with a knife but then the pain would go away and come back at irregular intervals. The pain only lasted a few seconds and then it was gone until it happened again. I could tell it was not a heart attack but at the time I did not know what it was. There is a shingles vaccine but apparently you shouldn't get it within a year of having the shingles.
Posted 10/23/2013 8:08 PM (GMT 0)
Thanks for the the replies kaz and gary
Posted 10/23/2013 9:28 PM (GMT 0)
And you shouldn't get the vaccine at all if you're on Remicade. It's a live, attenuated virus.
Posted 10/24/2013 1:28 AM (GMT 0)
OK so here is the detailed story. I felt the first bit of pain Sat/Sun in the shower, I washed my chest, and arm pits and it felt like I had a sunburn, just off and on, but i'm not going to sugar coat it, it hurt a- lot. I'm supposed to be a big tough army guy 6'3" 265lbs but I was almost taken off my feet by the pain. I went to the Doc Mon morn and they put me on ACYCLOVIR 400mg. I take Humaria weekly that's the only meds I use as I have an allergy to ASA......ugggg
Posted 10/24/2013 1:59 AM (GMT 0)
So based on our two stories, tolietcamper, shingles happens on weekends!

Sorry you got this but glad you got to the DR fast. The acyclovir should help a lot.
Posted 10/24/2013 2:15 AM (GMT 0)
Could very well be the Humira which caused this virus to come out of hiding. In fact, I'm betting on it.
Posted 10/24/2013 11:53 AM (GMT 0)
For me the warning sign (which I ignored) was a numbness tingling sensation on my stomach. In hindsight, it was kind of like the feeling you get before you get a cold sore just a larger area and on my stomach as opposed to being in/around my mouth.

The spot became more and more irritated and the numbness began turning into pain, but I couldn't see anything there until I woke up with the rash from my belly that wrapped around to my back. This whole process only took about 2 days from the first sign, so time is of essence!!!

 

Posted 10/24/2013 12:04 PM (GMT 0)
garylouisville said...
Could very well be the Humira which caused this virus to come out of hiding. In fact, I'm betting on it.
______________________________________________________

Then you are betting on an extremely low percentage. (< 1%)

When I had shingles I wasn't on anything but lialda at the time.

So my bet is that if you were to survey all those with UC that had shingles, that more of them were not/had not been on a biologic than had.
Posted 10/24/2013 1:21 PM (GMT 0)
I think we are comparing apples with oranges here. I agree with what you said in that most UC'rs who get shingles probably aren't even on Humira. Many UC'rs report stress either being a factor in causing their UC in the first place or causing their UC to become worse. Stress is also a well known factor in bringing out shingles so stress could be the single biggest factor in UC'rs developing Shingles. That doesn't have anything to do with the fact that Humira is also well known to weaken your immune system and bring out infections, which in turn could cause latent viruses such as Shingles to come out due to being on the med. That doesn't mean that many Humira users will develop Shingles but, if you do, I'm still betting on Humira as being causal factor in this particular case. I'm leaving my money on Humira.
Posted 10/24/2013 3:04 PM (GMT 0)
Can't really follow your logic flow..

You name several known factors that can result in a shingles outbreak, of those one possibly being Humira and then state that Humira is the one that caused it?

Whatever... it doesn't really matter anyway.
Posted 10/24/2013 5:58 PM (GMT 0)
All of you makes me grimace for your pain. I got the vaccine several years ago and now am really, really glad I did.

Fighting Shingles and UC at the same time, must be overwhelming. Hugs.
Posted 10/27/2013 8:18 AM (GMT 0)
I was particularly lucky enough to get a rage of shingles directly across my nose bridge, around my eye, up through my brow to my forehead. Scary talk about blindness for a minute, but it ran it's course. I must have a high pain tolerance, because between that and pancreatitis I felt both were both just dull pains. Very noticeable, but nothing truly excruciating. I'll take that blessing with all that comes with UC.
Posted 10/28/2013 8:25 PM (GMT 0)
I got shingles 3 1/2 years ago and then got diagnosed with UC 6 mos later. My UC symptoms started while I was recovering from shingles. I had it on the right side of my face along the trigeminal nerve. Looked like I took a bomb blast to my face. Had 2 months of the worse nerve pain - like random 12v electric shocks from my ear to jaw. NSAID's worked for 2 hrs at a time to dull the pain. COD3 worked a little. Trigeminal nerve pain is some of worse a body can experience.
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