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Remicade Induced Urticarial Vasculitis

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Crohn's Disease
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Posted 5/15/2012 1:27 PM (GMT 0)
The short version summary: Diagnosed with Ulcerative Colitis November 2010(2 weeks before 21’st birthday), emergency subtotal abdominal collectomy with temporary ileostomy and rectal stump December 2010 for a cure and to save life. Disease flared February 2011, rediagnosed with Crohn’s, no cure and now permanent ileostomy. Remicade and Imuran started, remission followed April 2011. Imuran discontinued January 2012 after 9 month remission period, rash developed, Remicade put on hold. Crohn’s flare March 2012 without medication, hospitalized and diagnosed with Remicade induced urticarial vasculitis. Humira started and prescribed Cimetidine, Reactine and Benadryl for UV, no improvement after 1 month, vasculitis now severe and systemic. Prednisone started antihistamines discontinued(current), minor improvement after 4 days on 40mg prednisone, Humira injection given, SUV back in full force. Lymph nodes in neck now greatly inflamed, itching won’t stop even with Benadryl, rash certainly not a pleasant appearance. Surgery again in discussion to remove rectal stump severely damaged by Crohn’s exacerbations and failure to respond to treatment. Does or has anyone ever experienced something similar, whether with or without Crohn’s? Really want this to stop, I don’t want to look contagious anymore or like a kid that ran through poison ivy. Just looking for any suggestions on what else I might be able to try at home – I’m still being treated by the dermatologist and have been referred to another specializing in immunosupressed or patients with medication induced reactions but at this point it seems medications alone aren’t going to cut it and I’m willing to try anything! I’ve tried OTC topical treatments and have had no luck, along with oatmeal baths, which helped the itching while I was soaking but damages my ostomy appliance from prolonged submersion. Just when you think it can’t get any worse than Crohn’s…How much worse does it have to get before it will get better? I’m 22, newlywed and ready to give up. The running comment currently is if there ever was one, I’m it – the needle in the haystack. The pain is no better, my ostomy output has tripled since stopping Remicade and I still require narcotics to function with some degree of normality, I don’t want to live my life this way and I’m too young to die. Please help, any suggestions or comments greatly appreciated, I can’t do this much longer. Catriara
Posted 5/16/2012 2:03 PM (GMT 0)
Catriara,

I'm not familair with the SUV, but it sounds awful. My husband had severe hives for 6 weeks and the prednisone, cimetidine and another antihistamine eventually helped him get better, but it was a tough road. Myself, when I was pregnant I had a rare itchy, blistering rash called PUPS. It covered my body and I cried and cried as my sores oozed. Awful. I tried the oatmeal baths, and the same as you they helped at that moment but then the relief would fade and I'd be miserable again. My one relief was a can of lidocaine spray - used sometimes for sunburns. It is a numbing spray that kill the pain for a couple of hours, and when it faded I would reapply. I was prescribed two cans a day as my rash was so extensive. Perhaps this is a suggestion for you? I always say, itchy makes me b!tchy, lol. I feel so badly for what you're going through.

Hang in there and keep us updated on what happens, both with the rash and the potential surgery.
Posted 5/16/2012 10:49 PM (GMT 0)
Catriara,
I am so sorry you are going through all this but I can relate. Your story sounds like mine except I had refused the colectomy. I was originally diagnosed with UC that changed to Crohns but I was lucky enough that I stalled the surgery long enough to get the crohns diagnosis. I had major bleeding issues and needed many blood transfusions.I was unable to control my flares with medications because I reacted to nearly everything they tried with the exception of Lialda, Humira and Cimzia but even when I was taking those, they only worked for a short time. My problem is pharmaceuticals. To give you an example of what happened this month, I was put on cholesterol medication ( Livalo) and this precipitated the worst flare ever that spread my crohns from the sigmoid colon to my entire colon, small intestines and stomach. When I was given Apriso 2 weeks ago to control the flare, it caused pancreatitis and I ended up in the hospital. While in the hospital, my Dr. ordered Cipro but the hospital gave me Zosyn and this caused the worst diarrhea I have ever had which put me in metabolic acidosis. This is a story that has been repeated over and over since my crohns diagnosis so I understand your sadness and frustration you are feeling.  When I was on Humira, I had a pretty bad rash and they gave me Visteril and it seemed to work pretty good although it did make me tired so I took it at night.

What has helped me for the Crohns, since modern medicine seemed to make things worse for me, I have resorted to trying herbal and natural methods to help control my disease and this is what they are.
-SCD or modified SCD diet. I avoid all breads, dairy and sugar. I eat all natural and avoid anything with preservatives or additives. I also eat small meals more frequently.
-Organic (Or grassfed if you can get it) meat
-I only drink filtered water and a little 100% pure OJ
-Rectal meds
-no stress and lots of rest
- Vitamin D3
-Fish oil
- WHole foods critical care flora ( for colon health) probiotics
- Slippery elm
-Bee propolis
- glutamine
-Cipro as needed for my stubborn flares


I wish you the very best and hope you can find a way to curb these flares. It took me several years of trial and error but since I react badly to most medications, I had to learn quick.
Hopefully InSoFla will see this post and can give you more info on natural things you may consider :)

Take care!

Post Edited (pmedic) : 5/16/2012 5:40:00 PM (GMT-6)

Posted 5/22/2012 8:17 PM (GMT 0)
Thanks to you both for responding and caring, reading your stories provides comfort that I'm not the only one dealing with this - before my original diagnosis of UC, I had never really knew what it was or what it could do. I went back to see the main dermatologist, blood work results confirm another crohn's exacerbation, whether continuing or reactive is unknown but markers have gone way up. Liver and kidney functions are staring to decline with the mix of the vasculitis and prednisone - the Humira for crohns has been temporarily discontinued to prevent further systemic damage and prednisone being taperered by 5mg weekly. I'm now down to 30mg as of today, my pain is getting worse and the spots that were going away and/or getting better are coming back, as are the blisters. I have to see the GI specialist again tomorrow, I'm terrified of what they're going to say, what I will have to do, or what choices have to be made. As of right now, I haven't noticed any weight changes or other signs of malnutrition which is definitely good news for a change but I'm really starting to lose hope in this battle, slowly drifting into another depression.

Eating seems to intensify everything at this present time, not much surprise there, but am/have been attempting to try different things to minimize the occurance, eat what works, stay away from what hurts. Most dairy products have been good, meat I'm not having much luck with, nor fruits and vegetables. Potatoes seem to be ok right now but bread is a definite no. Trial and error, what works one day doesn't always work the next.

I hope I am able to learn enough patience and pursistance to continue this fight the way you both have, just have to keep walking down this tunnel in search of a light.

Will update as situation changes in reguards to crohn's, vasculitis and surgery.

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