Hello y'all....it has been some time since I have posted anything. My eight months on ibrutinib have provided terrific results with my WBC now down to 26 (from high of 186) and Retic at 4.7% (absolute 193.8); absolute Lymph 20.5. My anemia is basically normal. Stopped taking ibrut for ten days (5 before, 5 after) for a total right shoulder placement nine weeks ago. After restarting had a change in areas of tingling skin but one new thing was the rash that appeared on the palms of my hands. It is called Erythematous rash to the hypothenar eminence. My Hematologist was very surprised because in all his years in practice he had never seen this location for rash before. Doesn't itch, burn or uncomfortable in any way. He is confident it will go away like all my other rashes have. Just thought I'd give y'all something new to think about....LOL I am truly blessed to be doing so well. (see picture below....anyone want to read my future.) Jack O.
Rash on hands (Erythematous rash to the hypoth... - CLL Support
Rash on hands (Erythematous rash to the hypothenar eminence)
Gosh. 1st glance - shingles? BUT cant see if it has any vesicles? (Small blisters) You say no pain etc. Any contact with noxious stuff?
The distribution is that of the Median Nerve
Perhaps our Ibrutinib friends will have seen it before.
Essentially - a rash from a drug will be generalised - all over, generally - no always.
If its localised as yours is - then likely it reacting from an external cause. eh heat could do that... Unless its nerve mediated - such as shingles.
I await others thoughts.
Nice to know your well tho!
Thanks for your reply but none of what you suggest applies. Other hand has small rash area also but is growing larger. Sorry I can’t post another pic.
Do you lift anything heavy (garbage can, etc--looks bruised in one area. Or do you open screw top water bottles? I sound like a detective, don't I —my mind always wants to know.
Be sure to let us know what transpires.
Wishing you well!
jdolinger, Thanks for the new medical term--"hypothenar eminence" I thought it was the base of my thumb, you know, that bulging thingy below the thumb on the palm.
Glad you are doing well and the shoulder replacement went well. Keep on truckin' .
That’s funny even my Hematologist said he had to search his brain back to medical school to remember the term.
I searched for "Erythematous ibrutinib" and got several reports of ibrutinib related Erythematous . I have seen references to this in the past.
WOW . . . I have this identical (I think it is) rash right now and it has been driving me crazy. It looks just like the photo you posted. Mine has itched terribly but that has subsided. The palms look like they were burned and the top of hands were swollen for a few days and fingers showed several blotches of what looked like blood along with a purple color. You could say it was quite serious. I have been seeing a dermatologist and am on the 4th cortisone cream and an internal Rx from my primary MD. After several weeks, just today I see progress in it getting better. My Hematologist/Oncologist didn't think it was related to CLL, but I thought all along it was the culprit. I'm so glad I saw your post.
Hi, curios to have a dermatologist do a skin biopsy, Im about 99% that it will come back positive for a parasite.
Have them do a skin biopsy and check for parasites. Also, try turning on a flashlight and let it stay on your hand for about three minutes and see what happens.
This is very interesting and thanks for sharing. Interesting it appeared on your restart....we all have much to learn with our miracle targeting drug. Please keep us posted on your out come....here is hoping it will just fade into the past!
I was pulled off the Imbruvica 420 after 6 months as I was fighting two different types of pneumonia in both lungs and I am currently back to watch and wait to see when the need to return to treatment will occur. As right now labs are normal for the most part. Having had CLL for going on31 years my immune system has been severely compromised I am still receiving IVIG every 4 weeks. Yes, both pneumonia vaccines have been received every 5 years since I was diagnosed. We really don’t know what is going on but Watch and wait is a great place to be....I am back to eating orange marmalade, red grapefruit and fruitcake I am loving it!
We learn from each other and so once again thanks for sharing and do keep updates on this rash!!!