I have CLL for about 20 years , and my first treatment was about one year ago. I’m on IMBRUVICA 420 mg. Has anyone ever experienced little red itchy bumps on their body?
Bumps : I have CLL for about 20 years , and my... - CLL Support
Bumps
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Jaming
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petechia is a common problem when taking imbruvica
However petechial red spots do not typically cause any symptoms like pain or itching.
I’ve had extensive petechiae on Ibrutinib but they’re not itchy or raised. Mention it to your haematologist because he /she may be able to suggest a topical treatment.
Newdawn
tizhmslf• in reply to
I'm on 420mg for over a year and have pepechiae on both arms, some turning into large blotches. I had a very large blotch on most of my left forearm.
I did cut back to 140mg for a month, and most went away. Now back on 420mg and spots returning. Ugly!
sometimes an allergic rash is just that.
I am also on Imbruvica 420mg and mine are Petechia so do not itch. I also had a rash all over my legs and feet, which also didn't itch however they treated me with allergy pills and it slowly went away. I seem to have side effects that pop up and then go away. This month I have cracking fingertips, right next to the nail, painful. Also the leg, hand and back cramping.
I seem to be touching all the symptoms one at a time. Most go away.
Jaming, are you taking a prophylactic antiviral? If not it is possible depending, on how the rash is distributed, that you are experiencing a shingles outbreak. If you think that there is any chance that your rash might be due to shingles it is important that you receive antiviral treatment within 72 hr.
gardening-girl
Gardening-girl, no not taking an antiviral. Dr said it was done type of lice. I live in a senior apartment, so no telling how I got it. Go figure right !
Yuck Jaming, hope you got it taken care of!
I sure did gardening-girl
Hello Jaming
Just curious are you mutated and what is your Fish profile ? How old were you when you were diagnosed? Seeing 20 years is great to see before first treatment.
Love hearing people having CLL for 20+ years.
Me too J_88 makes me feel better. I don't want to have treatment for a long long time.
When I was diagnosed last February my oncologist said to me don’t worry, people live for 30 years with CLL. I said this was really exciting news since I am already 76!
Elizabeth.
J_88 It’s been 25 years for me. Just started treatment last July. Feeling good thou
Thats Awesome.
Yes Jaming.. I too get a very itchy rash and have to take citerizine antihistamine tablets daily. I also bath in Hydromol emollient and apply Hydromol ointment to my skin. I find bathing every other day seems to help as well, instead of everyday. Tight clothing also irritates my skin so I am careful about that.
This regime seems to work for me.
Regards
Mayor
Hi Jaming
Sorry you’ve got itchy bumps after your treatment. I’m on different treatment , just finished 4 th round if BR. After second round I got an itchy rash on my body arms legs and head. It was extremely itchy. The only thing that worked for me was Benadryl during the day ( 12 hrs) and then piriton every 4-6 hours overnight to help me sleep. They never quite decided if it was the treatment or the allopurinol that’s was causing it but I haven’t had it since. Moisturising is important but if it’s an itchy rash you may need something more. I hope it improves very soon.
Google Harvard report re Benadryl
impact on Alzheimer’s. Best wishes, Elizabeth.
Thanks! Glad I only took it for a few days in the end !
What are you talking about sounds like Folliculitis. Can be treated with antibiotics, pills or cream. Check with your dermatologist. I have CLL, but not on treatment yet and I get them every now and then.
Yes! But I have CLL & CML. I am on the chemo “Gleevec “. I get them mostly on my face .
Maria In GA
me too. i’m on Sprycel (1.5 years) because he said there is some indication it may also help CLL.
i have had skin issues. they (derm) say Grover’s disease. they say mot related but i never any such issues. then i got a squamous cell carcinoma on my cupid’s bow surgically removed.
i get bumps on my scalp... they come and go different places. sometimes i can sorta scrap them; sometimes they/it might be slightly sore so no “picking.”
basically, my skin ... i am almost always scratching some where.
main thing is: my face.
first they (derm) said Grover’s doesn’t go on neck and face... oh yes it does.
i noticed my facial hair, particularly above my lip, the hair follicles or a hair(s) to touch felt like glass chard... to move or touch was ouchy.
nobody has any answers.
derms are lousy, but expensive.
i guess it’s better to just be alive. (not that i was in bad shape and now cml is mostly gone, but lethargic effects and listlessness remain... tired, weak.
but then i pretty much sit all day.
very glad to see a thread.
the cml forum i found is nothing like this one. it’s weird navigation and afaict not very active like this one.
so, i guess i won’t be asking to switch to gleevec. i doubt that would be possible anyway.
thank you
I had several occurrences of small red blisters on my feet which were quick to come and slow to go, and they were itchy, during the first few months of starting on Ibrutinib. Whether or not this was petechiae I have no idea but it was definitely related to starting on Ibrutinib and is something that has been reported by many people on this forum who are on Ibrutinib. Whilst Ibrutinib is extremely effective at targeting and clearing CLL out of the system it also has some less welcome off target effects and it is very likely that this is one of them. Good luck.
Are they like hard knots that tend to be red and itch and pop up unexpectedly on various parts of your body. They are slightly painful to touch and slow to go away.
That’s a normal
dose you ,rashes are a common side effect. You may need to get tested for toxicity and lower the full side by 140mg or more
I was reading an article about the Ibruntnib side effects and toxicity and that’s what they recommend
If you are referring to a dose of 420mg Imbruvica that is the normal dose.
Yeah that is the Norma dose but once yoh start experiencing toxicity lower dose .
You shouldnt have side effects after a year
That was not clear from your last post and I disagree with you. I experienced a mild itch after more than a year.
Sorry was just reading abour ibruntnib
No problem,
But believing all the possible side effects could be dangerous. My late mother in law would read all the side effects of all her prescriptions and worry and then convince herself she had them all.
Hi Jaming. I’m not taking imbruvica but I thought I’d weigh in because I also get pinpoint tiny raised bumps that are very itchy. I kept thinking they were flea bites but no one else is getting bit and they are mostly on my trunk and not typically clustered at all. I’m on bendamustine/rituxamab but I started getting these dang things before I started treatment. I think they’re CLL-related; not treatment-related.
They are not petichae, nor are they abundant enough to consider them a rash - maybe 2 dozen spread over my trunk and arms.
I do find some relief with topical hydrocortisone cream bought over the counter (not prescription).
Hi.......I have little bumps by my elbow..on both arms....like little lymph nodes
Hi Jaming,
I have had rash above my lower right ankle since June. I started I&O at Mayo’s in April of this year The rash has persisted until October and is slowly disappearing.
I did see my local Dermatologist at Mayo’s suggestion, but they could not give me a diagnosis. They prescribed a steroid which only alleviated some of the redness & itchiness. It was itchy, red, and bumpy and was confined to only that part of my body. I did not have any other allergic symptoms so the only thing I did was to continue the use of the steroid which did nothing to shorten the duration.
I have a Dermatology appointment at Mayo’s in November, but feel that the only way to get definitive diagnosis will be a biopsy, if even that will reveal what it is. Will post after my appointment in November.
It definitely is not a petechial rash.
Varney
I did and still do. I was on a Ibrutinib/Venetoclax trial for 12 months. I'm MRD neg and off the drugs now but I still have a back rash with very itchy small bumps.
Congrats, How long have you been mrd negative?
11 months now
I hope it's the cure for you. It's what we all want. I think about cll every second of the day and hope to see a cure one day. It plays with me physiologically.
I don't think it's a cure but a reset button. The drugs got rid of the bad cells but they didn't teach the immune system to do it like CAR-T does. It just takes a few CLL cells to restart the doubling process with mutations that might be completely different. The worse case scenario, it is buying me years before the CLL cells invade my body again. Then we might have other drugs and maybe a way to teach the immune system to work against CLL.
You don't think MRD negative might be a cure?
Too early to know only time will tell, it's my understanding.
Oh my YES. For 6 months I had itchy bumps all over legs from ankles to knees. Now that I am off all meds, I was surprised when the same thing broke out between my fingers, now 6 months duration.
I did. Think they told me it was coming from my blood. Never bother me , thou
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