CLL side Effect.

[elvs52]

My CLL gives me blood spots on my arms petachiae. They are real bad! I take Imbruvica 420mg tabs for treatment. Tiredness also.

[Newdawn Administrator]

It’s a bit of a standard side effect I’m afraid with Ibrutinib. I have them extensively along with pretty large, severe looking bruises. My specialist sees it as ‘par for the course’ and it’s due to its anti-coagulant action rather than poor platelet function.

Mention it to your doctor however if it’s becoming an issue. I see from your previous post that you’re having a hard time with Ibrutinib.

Newdawn

[stunned]

I have what i thought looked like freckles on my legs and hips and now my arms and neck, on closer inspection each one is a tiny bruise, i also have small penny sized bruises on my legs and arms.

My doctor says it is a combination of the Ibrutinib and my anaemia getting worse.

i may have to have a bag of blood if my anaemia does not improve over next week or so.

Given the positive effects Ibrutinib is having on my lymph nodes and blood counts, i consider it a small side effect....i could change my mind if this tiny bruises become more noticeable or become itchy.

Having suffered with virulent hives ( urtricarea) for over 4 months and finally getting them under control with Atarax antihistamines, i dont need any more itching. lol.

Hope you get it sorted soon.

Anne x

[cajunjeff]

All CLL drugs come with side effects. I have had some petachiae, it comes and goes. They can be unsightly, but for me painless and worth the trade off for ibrutinib controlling my cll.

Fatigue and tiredness are more problematic, but that can be a chicken or the egg what comes first thing. Is the tiredness coming from the cll or the ibrutinib? I would discuss that with my doctor. If its due to the ibrutinib, he might consider a dose reduction.

With ibrutinib and its side effects, we need to do a balance sheet of sorts. On the one side put the benefits, on the other, the detriments. If the detriments outweigh the benefits, then we have to look at other options.

For me ibrutinib has lowered my wbc from 250k to 8k, has helped my hemoglobin recover from 7 to 14 and has my platelets trending towards normal. And all of that has been without the toxic risk of chemo.

The detriments have been the little red spots which are mostly a cosmetic issue, some diarrhea and not too bad joint pain. The diarrhea has been the worst for me, but I have learned to manage it. Since I started daily probiotics, it has been less a problem. So for me the benefits far outweigh the detriments.

I feel fortunate because I know some folks have truly intolerable side effects with ibrutinib such as afib, painful rashes and severe joint pain.

You can pause ibrutinib, with permission from your doctor, and see if your tiredness improves. If it doesn't, its probably your cll causing it.

How has ibrutinib improved your labs? I would be hesitant to pause it or reduce my dose just based on petachaiea if your numbers are trending better.

[Hidden]

i've had it on most of my body at once time or another. as long as it's not itchy it was not an issue. most of my body cleared up but know i get small area itchy rases that seem to rotate to different sites over my body

[lotn9]

I am not on anything, yet I still have these little red/mauve spots on my arms, they sometimes itch, and can be painful. I showed them to my oncologist, who said he was not concerned. They last a few days, by the time I get to the doctor they are usually gone, so this time have taken photo to show. I am still in remission, but have the most awful joint pain, in knees, ankles and right wrist. Oh well, I am getting old and so are my joints. Glad that this topic has been raised, and that I am not alone.

[Redlion]

I found that the petachiae and bruising declined after 3 months and I have not had either for at least the last 6 months, I'm now 13 months in on my Ibrutinib treatment, wish I could say the same about the roving arthralgia.

[W00dfin]

I have had subnormal platelets and easily bruised arms throughout 8 years of WW, 6 years of post-FCR remission and now 3 years of Ibrutinib. My oncologist said that the bruising is not solely caused by low platelets but also because low quality of my platelet production. Like others have said I am thankful for the benefits. All my other counts are in normal range. 😊

[jdolinger]

Elvs52 welcome to the world of ibrutinib side effects. I also had extensive petechiae spots on my arms and buttocks and thigh; plus extensive total lower leg purplish discoloration (petechiae) but after two months all have almost disappeared. I'm sure more will arise especially if I accidentally bump up against something. Don't be overly concerned about these spots but be sure to mention to your physician. Fatigue will remain for a long time. Many posts about fatigue on this site. Best wishes for future good results. Jack O.