Sick from imbruvica?

[Rickeyj]

After 2 years of success on imbruvica, I am having terrible side effects that I attribute to the drug. Shortness of breath, spiking very high blood pressure, weakness. Chills. Has anyone else experienced this?

[Newdawn Administrator]

These are side effects associated in a small percentage of'people taking Imbruvica (Ibrutinib), Rickey.

If you haven’t already reported this to your haematologist, you must do so without delay.

Best wishes,

Newdawn

[TimHB]

Contact your doctor immediately. Sounds like symptoms I experienced which turned out to be atrial fibrillation. They were able to treat it and I'm back on ibrutinib and doing well, but it can be very serious.

[zaax]

Ibrutinib can make Infections quite serious, maybe a trip A&E to make sure its anothing bad.

[Rickeyj]

Thanks

[cajunjeff]

Yes you should report this to your doctor immediately. One strategy to see if your symptoms are ibrutinib related is to take you off ibrutinib and see if your symptoms go away. If your symptoms stay, there is less chance ibrutinib is the culprit.

If they are ibrutinib related, your doctor might consider lowering your dose to see if that helps.

[Que-sera-sera]

Yes, I just went thru this myself in January, also a little after two years of being on IB. Definitely the palpitations and shortness of breath but not the high blood pressure. Nevertheless I stopped the ibrutinib and symptoms improved soon thereafter. We just checked my counts for 2nd time since then and they have not changed, I still do have a little bit of shortness of breath that cll spec wants to check further before we decide where to go next. Pls let us know of your progress. Best regards.

[Rickeyj in reply to Que-sera-sera]

Thanks nice to know I’m not crazy. Dr keeps saying not drug

[Deta1961 in reply to Rickeyj]

Me too.... after 18 months of Ibrutinib, the blood pressure is normal, tha's the only difference...I reduced for 2 instead of 3 since June 6, waiting until the 19th July for blood test.

[Lulu11111]

Hello, I'm on Ibrutinib also but I've never experienced anything like the shortness of breath, atrial fibrillation, or very high blood pressure. I've only been on this new medicine for less than a year. Only about 2 months and right away I had a good report about the lymph nodes decreasing in size, which I was very happy about. It's very important to have this talk with others who are experiencing difficulties with being on Ibrutinib so that I/we can know what to look out for. Thank God for this website!! Because knowing about something is half the battle. I appreciate all the responses. Sorry that I don't have more to add on your condition as I am quite new to this myself.

Best wishes on your road to remission.

[barger1951]

I had two years of success with Ibr also. Had to stop taking the drug for a couple of months for another medical issue....and low and behold my (good) numbers went up! So for now I am off the drug until further notice (doctors orders). Personally I feel like my body is enjoying taking a vacation from the drug. Everyone is different, but I am happy to be off it. I was getting the 420mg single pill.

Good Luck!

Barger1951

[Hidden in reply to barger1951]

Happy to hear you're off the drug and doing fine!!!! Hope you stay that way!

[lorna222]

Hi Rickeyj,

I've been on Ibrutinib for 10 months now 420mg, I take it in the morning and I have felt rather crappy for most of the time. I am going to see a CLL specialist in a few weeks, traveling to a different state since there is not one where I live. The Dr. I have is really awful and could care less about the side effects I expereince. The fatigue is overwhelming, had some unrelated thyroid issues which knocked me down, just getting over strep throat and generally feel old and tired and not myself. I see here that many people have side effects in the beginning - but 10 months in and it seems for me that I still have side effects. Keeping my fingers crossed for the new Dr. Just trying to get to the bottom of things - Either its the CLL, the Ibrutinib or something.....just want to feel better!

I have cold hands and feet, can't sleep through the night, also shortness of breath, no stamina for the first time in my life, weak in general UGGGG here's to feeling better!!!!

Lorna