Swelling on arms

[FranceMary]

I get swellings on my arms and wonder if they are serious. i have been taking ibrutinib for 2 months and have improved in all other ways.

[Cllcanada Top Poster CURE Hero]

Have you seen your doctor? Could be edema, they need to run some tests...

~chris

[PaulaS Volunteer]

Hi FranceMary,

In my early months on Ibrutinib I developed swollen, puffy hands, wrists, elbows and ankles. After a few weeks, all went back to normal (with no special treatment and no reduction in dose of Ibrutinib). It was fluid and just drained away.

But your swellings don't sound quite like that. I agree with Chris that you need to see your doctor.

Good to hear you're doing well with the Ibrutinib in other ways.

Best wishes,

Paula

[joycecanada in reply to PaulaS]

Hi FranceMary. I had swelling in my hand which quickly moved to my arm. I was treated for cellulitis with crazy amounts of antibiotics which did nothing except give me C-Dif It was finally decided that it was not cellulitis but was an allergic reaction to Ibrutinib. I was off Ibrutinib for 6 weeks and finally the swelling subsided and I returned to full strength ibrutinib. I have had no recurrence ...(touch wood) and am doing well.

Moral of the story.....see your hemotologist , unfortunately a GP does not deal with the sometimes "weird and wonderful" side effects of ibrutinib.

Best wishes,

[FranceMary in reply to joycecanada]

I have given this same reply to Paula.Thank you for replying. I didn't want to bother my haematologist unnecessarily and the swelling has gone down a lot. However you seem to be warning me so I will make an appointment. I also dread coming off ibrutinib as I feel I have been given a new lease of life. It was so bad before! I really appreciate you taking time to advise me.

[FranceMary in reply to PaulaS]

Thank you for replying. I didn't want to bother my haematologist unnecessarily and the swelling has gone down a lot. However you seem to be warning me so I will make an appointment. I also dread coming off ibrutinib as I feel I have been given a new lease of life. It was so bad before!

[PaulaS Volunteer in reply to FranceMary]

Hi FranceMary,

As joycecanada has said, Ibrutinib causes all sorts of "weird and wonderful" side effects. It's often hard to know what things are due to the Ibru, and what have other causes.

Most Ibru side effects do seem to disappear with time, though it's not guaranteed. Of course the fact that the swelling has already gone down a lot, is a very good sign. And you're very unlikely to be taken off Ibrutinib after just 2 months, with just a bit of swelling.

I've been through a whole range of Ibrutinib side effects, but so far they've disappeared with time. My latest problem is an itchy red rash on my upper arms and neck. But just last week I started on Co-Trimoxazole, AND I've been out in a bit of sunshine the last few days, so it could be a sun sensitivity with the C-Trimox and nothing to do with Ibrutinib.

I still think it would be good to ask your doctor about the swelling though, just in case.

Best wishes,

Paula

[FranceMary in reply to PaulaS]

Thanks Paula, I will update when I know. It is great to know there are friends out there who have personal experience of ibrutinib. All the best to you. Mary