Venetoclax.......Tremor????

[jaypax]

I've now been on the maintenance dose of Venetoclax 400mg daily for 3 weeks and have noticed a very disturbing possible side effect........ I have developed a tremor, most noticeably of the hands. Also, I am not coordinating movements well, even typing this on a standard desktop keyboard is taking some concentration! Of course I have become rather clumsy with daily manual tasks.....just as well I have retired! I was a dental surgeon!!!!! Pity any patients I might have!!!!

I'd be interested to learn if any other "Venetolcaxters" have the same?? Best wishes to all. Jeff

[cajunjeff]

Hi Jeff, sorry you are having these problems. “Tetany” is listed as a possible side effect of venetoclax and I could see tetany manifesting itself as tremors in the hands. I would definitely report it to my doctor and to pharmacist if you are getting venetoclax through a specialty pharmacy.

Since there are many reasons for tremors unrelated to medication use, other causes have to be considered as well. Tetany, if it is that, can be caused by low calcium, so looking at bloodwork might be a good place to start.

I think more of spasms than tremors with tetany, but it is a listed more common side effect on the venetoclax label which also describes twitching seizures as a side effect, which I suppose could be the same as tremors.

[jaypax in reply to cajunjeff]

Thanks Jeff. I will definitely contact my specialist nurse and am due to see my GP this week to review my BP medication. Incidentally my BP is quite low and I am mildly anaemic and now having GCSF as I was close to being neutropaenic at my last bloods. But Lymphs are down to 1.8 from 206! 👍👍 Best wishes Jeff

[jaypax in reply to jaypax]

I have now been in touch with my nurse who has told the doc about my problem. She has now asked me to reduce to 200mg Venetolax as a precaution and I'm having bloods today and telephone consultation tomorrow. Thanks for the advice. I have to say the health care team really do care! Best wishes. Jeff

[Jooby59]

I have been on it 7 weeks and had nausea, dizziness and, embarrassingly, wind 😱 but no tremors. Do you have a clinical nurse to ring? Mine is great with this sort of query. Good luck.

[jaypax in reply to Jooby59]

Thanks Jooby59. Yes, I will definitely contact my specialist nurse.....I was hoping that the tremors would disappear but not to be. I see that tremor is mentioned as a possible side effect in rare cases. I found that the first couple of days after ramp up, I had the nausea and dizziness but not put in the embarrassing situation as you!!!! Well, that's my story!!!!😆😂

Best wishes. Jeff

[jaypax in reply to Jooby59]

I have now been in touch with my nurse who has told the doc about my problem. She has now asked me to reduce to 200mg Venetolax as a precaution and I'm having bloods today and telephone consultation tomorrow. Thanks for the advice. I have to say the health care team really do care! Best wishes. Jeff

[Jooby59 in reply to jaypax]

That's brilliant news - hope it works well. My local hospital is fantastic and yours sounds really efficient too but I gather we might be in the minority! x

[jaypax in reply to Jooby59]

Quite right. I am always singing their praises. They are always ready and willing to offer advice and support. As far as I have experienced our NHS is simply wonderful. Jaypax