How do you feel while on Imruvica?

[RK69]

I’m on 560 ml and it is working well for me butI feel medicated and my legs are sore. Any other side effects?

[Cllcanada Top Poster CURE Hero]

That's not the ususal dose for CLL, it is recommended as 420 mg per day.

Talk to your doctor...

~chris

[migirlusa]

I didn’t know there was a 560 ml. I’m on 420 mg.

I had to have 2 blood transfusions, had and still do have bouts of petechiae, had bleeding behind both eyes. Now I know that sounds kinda bad but through this all I have felt better than I have for months and my blood work is great.

I hope your situation smooths out soon.

Pam

[lankisterguy Volunteer]

Hi RK69,

I went back to see your previous posts since the 560ml Ibrutinib/Imbruvica would be the normal doses for some NHLs and not for CLL. So before the replies fixate on the dose here is the background:

-

Hi everyone. I used to be RK66 but I forgot my password and the email I used 3 years ago, so meet the new me....RK69.

-

After 6 years of watch and wait I finally went into treatment on May 1st of this year. Boy, did I go into treatment. My lymph nodes were swollen all around the back of my head, under my arms and in my groin. My platelet level was 6 and I temporarily had double vision. Needless to say, they put me in the hospital and then suspected I had lymphoma and said if I did, I’d only have 2 to 6 months to live. I don’t have lymphoma but I do have leukemia cells in my spine and have been receiving spinal taps or lumbar punctures for the past three months. The malignant cells have all but disappeared in my spine and I only have two more treatments and I’m done. Yay! I am currently taking 560 mg of Imbruvica hoping to be reduced to 420. I’m doing well and my doctor says I’ve had a “remarkable turn around”.

-

Len

[TimHB]

I'm on 420mg and have had roving joint pain and terrible leg cramping at night that prevented sleep. Tried everything - Ambien, TylenolPM, but in the end the only thing that worked was CBD oil. A few drops under my tongue at bed time got me through the night. I'm happy to report that after 5 months, those side effects have greatly reduced and I take less Ambien and no more CBD.

[W00dfin]

I have been on 420 mg for 15 months and doing well. I had sharp pains in my knees and hands/wrists for the first two months. Fortunately it was usually in only one location at a time and lasted a day or so. I called it 24 hour arthritis. I used ice packs and Salonpas pain patches which helped manage the pain. I still have occasional mild pain but nothing as bad as at the beginning. Best wishes!

[kathymac52]

My husband is on 420 mg, and has had joint pain...but treated with ice and heat it is better. He also has had brittle nails, and some tummy issues....but his blood work and neutrophils are much better........we are in a good place now.