I’ve had a debilitating intestinal condition enough to get me hospitalized for 15 years.
The diagnosis has varied from Ulcerative Colitis to Crohns to IBS to Colitus.
The symptoms started after coming back from Bolivia as an exchange student in 1974. The very fact that the diagnosis varied from doctor to doctor and even within a single office has made the process of dealing with the condition that much harder. Over the years I have been given every medicine prescribed for these conditions with little help from any of them. Most made the symptoms worse. Lomotil helped but made the doctors fearful of some of the side effects. Prednisone has helped with doses ranging from 20 mg daily to 60. As this was the only medicine helping this left the doctors concerned about long term side effect. As a result they prescribed me with Humira 6 months ago. In the first few months the improvement was limited and the side effect subtle. As time progressed I noticed a repeating cycle of an itchy rash on various spots from behind my knees and inside my elbows to my stomach, chest and neck. In some locations the itch would be bad even with no visible rash. Conversations with my GI doc sent me to a dermatologist who was convinced that Humira wasn’t causing the rash\itching. He gave me some powerful creams meant to help the itch, (they did not) and no answer to what was causing it.
My GI doc pulled me off the Humira for 30 days
to see if it stopped the rash, but seemed to have little affect.
As a result he put me back on it. This time around the rash\itching were worse than before. It became clear that things I had always been allergic to were affecting me more seriously. Cats, dust from epoxy, teak and mahogany have always been an issue but very manageable. With the Humira the affect were beyond control. I was covered with a rash from my head to my groin. My memory is somewhat unclear here but it actually seemed like it got worse towards the time for a new shot. Finally my GI pulled me off the Humira. During my withdrawal from Humria the rash got much worse. I spent 6 weeks unable to sleep due to the itching. Anything touching my skin was unbearable. It was like wearing a shirt made of fiberglass insulation. I tried every cream, lotion and oil. Areas exposed to the sun, even for very brief periods, were much worse. I wore gloves and clothing over every inch of my body. My skin became so inflamed that it began peeling as if from a serious sunburn. The worst hit areas peeled thru three layers of skin leaving the last layer bleeding and painful to the touch.
I share this story fow two reasons:
The first to let people know there may be a very hard path to walk after you stop taking Humira and to be ready for it. Pay attention to how you body handles the time just before your next shot it may be indicative of how you will be when\if you stop. In my situation there appears to be some connecting between pre existing allergies and Humira’s amplifying their impact on me.
The second thing I wanted to share was a bright spot. When the rash was at it worst my wife found a cream called Dermarest Medicated Moisturizer for sensative skin – 24 hour itch relief. Nothing else worked and most creams burned. This stuff was great and fairly cheap compared to most of the other prescription meds. In our area, Walmart is the only place that sells it. There is a version that has red on the box\tube and one that has green. The green didn’t help at all and the red helped alot. I hope this helps anyone experiencing the rash.
Submitted by Drew in the Colitis Venting Area
If you have a story to share or get off your chest, feel free to go there as well and do the same!
Some other Humira Related Stories:
Side Effects from Humira (Pictures included of some nasty skin lessions)