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Crohn's Disease Forum » Treatment » Remicade/Infliximab » Pain to beat all pain, SHINGLES!


06-01-2016, 07:37 PM   #1
IAmTheWalrus
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Pain to beat all pain, SHINGLES!

Fricking frickity frick frick.

Noticed a few days after my second infusion/loading dose of Remi that I had this patchy, rash starting from the lower left side of my back, down my buttock, and to the top of my leg.

The pain is un-fricking real. Feels like my leg/buttock is on fire.

Noticed the pain on Monday, started the anti viral drugs today, Wednesday. Please tell me the pain subsides?

Anyone here have it?
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28 y/o male from Dublin, Ireland, Dx with Crohn's Colitis in January 09.

Current Meds: Remicade, Imuran.

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06-01-2016, 08:04 PM   #2
Lisa
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My husband had it recently.....see if you can get a prescription for gabapentin..it helps with nerve pain.
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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.
06-02-2016, 11:46 AM   #3
Scipio
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To prevent shingles is why I've had the adult vaccine. No vaccine is 100% effective, so I hope it continues to work for me. And I recommend it to all others who qualify.
06-02-2016, 07:22 PM   #4
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When I had it I asked the pharmacist and he told me burn cream/spray would help. There is also a lidocaine cream he told me would probably help, but it was like $20 so I couldn't get it.

The burn cream did help a little though.
06-02-2016, 08:04 PM   #5
Lisa
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When I had it I asked the pharmacist and he told me burn cream/spray would help. There is also a lidocaine cream he told me would probably help, but it was like $20 so I couldn't get it.

The burn cream did help a little though.
My husband tried that with little results, it would help for a few minutes and that was it. Worth a try though if you can get it reasonably priced......remember those work from the outside in, while other meds work from the inside out.
06-02-2016, 08:40 PM   #6
Salad_Shooter
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Please, always check with your doctor before receiving any live vaccine. Most are contraindicated for those of us who are immunocompromised.
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End Stage Severe Fistulizing Crohn's Disease (Diagnosed 40 years ago)
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06-03-2016, 09:31 AM   #7
IAmTheWalrus
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I finally got some sleep after after 3 days of no sleep.

I don't want to trivialize more serious ailments, but the pain has being nothing I've ever experienced. Thankfully it's not as bad as it was, co-codamol has helped somewhat.

Also, it looks fecking disgusting. Doesn't help that I have trypophobia.
06-03-2016, 10:33 AM   #8
Scipio
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Thanks Salad Shooter, you are quite right. I should have remembered to include that warning.
06-03-2016, 02:47 PM   #9
Lisa
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I finally got some sleep after after 3 days of no sleep.

I don't want to trivialize more serious ailments, but the pain has being nothing I've ever experienced. Thankfully it's not as bad as it was, co-codamol has helped somewhat.

Also, it looks fecking disgusting. Doesn't help that I have trypophobia.
My husband has a new appreciation for pain too...his case was on his head/face - right over his left eye, with eyeball involvement.....although the constant pain/tingling (he describes it as a million little critters zapping him) has diminished, he will still get sudden, severe shooting pains where he wants to rip his eyeball out....

The Gabapentin has helped with that - he gets the pains less often, and I think the severity is going down too.

Unfortunately, there is no quick cure out there, hope you find something to help you with the pain!
06-10-2016, 09:18 PM   #10
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My husband had shingles and the doctor perscribed valacyclovir which helped. The nerve pain lasted a while but I rubbed some essential oils (Deeper and Ravintsara) and it really helped.
06-10-2016, 10:57 PM   #11
Catherine
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We used Zostri HP.
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Mother of Sarah dx aged 16, Jan 2012
DX - CD 1/12, asthma
Small bowel to small bowel fistula

Meds: ), azathioprine 200mg, Mesalazine 1.2g x 2, seretide 250 x 2 (asthma), ventolin (as needed)

Currently no supplements.

Has previously taken Multi B, Caltrate, B12 & Iron

Prednisolone (from 30 mg 01/02/2012 to 17/06/2012, 30mg 24/10/12-28/12/12, 50mg 24/1/13-27/4/13)
08-20-2016, 03:57 PM   #12
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I've had shingles and it is awful. The faster you seek/get treatment, the easier it is to treat and the faster it goes away. You got to the doctor pretty quickly, so I hope you are better by now.
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Diagnosed with Crohn's Disease Oct 1982; Rheumatoid Arthritis Nov 1985; Ankylosing Spondylitis June 2015
Taking 150mg Azathioprine; Remicade, Tramadol, Celebrex
Been there, done that: Sulfasalzine, Pentasa, Asacol, Prednisone, Budesonide, Cimzia, and more colonoscopies than I can count
08-20-2016, 04:19 PM   #13
Trysha
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I had shingles over the back of my head,right side,occipital area plus the right ear and round to my right eye...the eye was not involved.
Treatment after three days misdiagnosis was valacyclovir and a drug similar to gabapentin.
I used olive oil to stop the burning and apple cider vinegar to stop the itching.
It was a very hard time till healing occurred.
It has left me with post herpetic neuralgia headaches that can be nasty but recently I have found acupuncture alleviates this...better than most drugs ...
Feel better soon....you have my greatest sympathy.
Hugs
Trysha
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