Went dermatology today at my local hospital after being referred by my GP about the terrible rash I had all over my body from November'thankfully it's going but still there . What surprised me was the doctor said it wasn't dermititis as my GP but reaction to my covid jab (6th) that I had on November 4th . I had started to wonder myself as I have had nothing like this before and I see phizer are now including all over body rash ,hives etc as a side effect on there website after there press release last Friday. Now please I'm not anti vac quite the opposite but thought as this has happened to me and it all I'm not alone to make others aware. I'm back on antibiotics and a different steroid and they took pics and looked at the ones taken at the time . Hopefully I will continue to improve and I have to go back in two months .
Update on my skin rash : Went dermatology today... - CLL Support
Update on my skin rash
Hi cartwheels,
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We had a discussion on rash earlier today- this may provide some more insight healthunlocked.com/cllsuppo...
(it's not a simple issue for us CLL patients- lots of opinions and guesses about cause, some things like steroids can reduce symptoms for a short time, but rarely a cure or definitive diagnosis)
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Len
Thanks Len and I'm aware of skin issues with CLL I have had cll for 10 years and treatment over 6 years now but this has nothing to do with ibrutinib they made that clear. As I said I'm clearing up now but the last few months have impacted my life far worse then anything even cll itself so hasn't been pleasant. I originally thought maybe it was a type of scarlet fever as I also had terrible flu like symptoms but they have said no it wasn't that or covid as I tested negative 4 times . As for there assessment that it was a reaction to the jab a little surprised as it was two weeks after my jab although I did have dead arms numb fingers etc during this time. All I want is to keep getting better and to make others aware what happened to me will not happen to everyone and maybe it's because it was my 6th vaccine and the modified one I don't know.
Hi cartwheels,
OK- we can agree to disagree. You believe that your doctors have perfect knowledge of what is the cause of your skin issue, I really doubt that, based on the information I presented.
If you pause or stop Ibrutinib, your skin may improve, and then you might change from Ibrutinib to Acalabrutinib. Or it may not. Your body your choice.
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Len
So you want me to believe you ,not my consultant or dermatologists ? I'm only saying what I have been told . I know it's not ibrutinib I tolerate it well I'm awarecof the side effects and both my cll consultant and dermatology department are confident it's not related to ibrutinib or my CLL or dermititis as my GP originally thought. I as they said I know myself as I had nothing before my 6 th jab if I put on my pics of how bad my rash was you would see for yourself my skin was hot to touch red ,hives all over this wasn't just a skin rash it's took over two months to get to there prognosis
Helo! And what was the diagnosis? thank you
hello. when the dose of ibrutinib decreases, I started my hives. unless it was ibrutinib withdrawal. I don't think it has anything to do with this drug. greetings
I have never stopped taking ibrutinib not even for strong antibiotics since I started on the drug 6 years ago,. Hence why I and my consultant do not think it is anything to do with ibrutinib. Of course Cll leaves us open to wierd responses from all infections etc so that obviously may have played a part
glad to hear it is improving and hope you get much better soon. X
I'm glad you have an answer. Developing any allergic reaction, even to a vaccine, does suck - I know.
Since the docs think that is the cause, I'd caution you to either avoid any further Covid shots, or space them out a LOT more and try them with a lot of Benadryl. If it were me at this point in the Covid virus cycle with my health, I'd do the former (but I'm still untreated W&W, although I have the "developing allergies with CLL" part down:)) - there are treatments now, and allergic reactions to an allergen you can't instantly remove from the body in some way are very dangerous.
After trying everything I could find, the infectologist who saved my leg from infection recommended I try "cutaclin". I don't have an overall rash, but a dozen big red blotches. After a five days of applying the ointment 3 times a day they are almost gone. Hopefully this is a solution!!
Dan
Good to hear you are improving. That is a miserable situation to be in.
Adverse immunological reactions to the injections are not uncommon and it is unfortunate how politics and emotion so often distort the issue.
I suspect CLL predisposes us to these types of reactions. I know I respond differently to several medications, OTC healthcare products, skincare etc., with allergic hypersensitivity reactions that I never experienced prior to CLL.
Yes agree, and I was surprised myself as I apart from numbness in arms , fingers etc I was fine with the other 5 vaccines and I have also had covid twice . Personally I won't have any more now as I think I have had both natural and vaccine exposure I will still have my yearly flu jab though
Yeah, allergies are crazy, especially adult-onset ones. Their hallmark is you are fine, fine, fine with the product and then one day, you're just not (sometimes spectacularly so, like for me and tree nuts). And normally you have no warning that you aren't gonna be fine.
Well allergic reactions especially to insect bite was the first thing that gradually over the years got worse that led to my cll diagnosis. So yes for us a bug Bear we have to live with. Have to say though that since I have been in remission on ibrutinib I have no reaction to insect bite etc now so one positive
Rash spreading all over my body.
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