Dizziness and Acalabrutinib

[Fogey]

Dizziness is listed as a very common side effect of Acal. I have had dizziness since day 1 of Acal treatment more than 5 weeks ago. I find it debilitating. Has anyone else in this friendly community had this problem and is there any chance that it will disappear with time? Thanks.

[Sepsur]

chronic vertigo on ‘ibrutinib’ - got put on a drug that reduced the intensity - eventually I seemed to accommodate I & V.

What I have been left with is a permanent mild disorientation - a bit like stepping off a curb that you weren’t expecting. THIS MAY HAVE NOTHING TO DO WITH TREATMENT - it maybe peripheral neuropathy - damage to sensory or autonomic nervous system caused by long ICU stay ( or treatment)

[Fogey in reply to Sepsur]

Thanks Sepsur. I don’t suppose you remember the name of the drug that reduced intensity? Glad it helped anyway.

[Sepsur in reply to Fogey]

I can’t recall - I’ve been there n so many - I seem to remember it being an anti nausea tablet

[Walkingtall62]

I have to say I have not seen so many problems with Acalabrutinib (presuming new tablet form) as I am doing. Me also. Just doesn’t feel right and I was living a happy life on the capsule form. AZ need to answer. Dizziness is something I haven’t got! Take care

[MorganNL in reply to Walkingtall62]

I also have had changes since being switched from capsule to tablet form😥 but am unsure whether it is the tablet or old age😂…...just turned 70. I switched to tablet form mid March 2024 and have found since mid April that my muscles/joints are aching all the time. Not due to see my hematologist until Ocober, but might ask for an earlier appointment.

[Walkingtall62 in reply to MorganNL]

My aches and brain fuzz were marked down as long covid by my haematologist. Heh ho. Lucky I had had covid I suppose

[Fogey in reply to Walkingtall62]

It’s often just guesswork.

[Katie-LMHC-Artist]

I have had sporadic vertigo for years (before treatment). The last time in the ER a few years ago (I couldn’t walk or lie down) they gave me Meclizine. It was helpful. In the US it can be purchased OTC. I buy a product that is sold for motion sickness and keep it in my cupboard. Are you able to get something like that and try it? It’s worth a try. Take care!👩‍🦳

[Fogey in reply to Katie-LMHC-Artist]

Thanks Katie. I might give that a go.

[Katie-LMHC-Artist in reply to Fogey]

Hope it helps!👩‍🦳

[Lil0ppie]

Yes, for the first 4–5 weeks I had morning headaches and dizziness when I stood up. Both have gone away in the past week.

[Fogey]

Many thanks. Very encouraging. Bestest.

[RamOren]

Hi did you check your heart rate ? In the first 2 months on Acal I also had dizziness. Found out that Acal. increased my pulse (Tachycardia). A cardiologist (after consulting with my CLL expert) gave me a beta blocker to get my heart rate back to normal.

[Fogey in reply to RamOren]

Yes my heart rate is low and normal for me (resting rate ~60bpm) and my blood oxygen is in the high 90s. My CLL consultant thinks the dizzy spell will pass in a few months!

It seems we’re all different and I’m pleased that you’ve been sorted via a beta blocker. Good wishes.

[5214]

I’ve been taking it about a year and started off with 2 my doctor said I would get adjusted but never did so he said to keep taking the one at night and it doesn’t bother me. I felt like I had the flue with vertigo just awful. I saw my doctor recently and he said it wasn’t working so I tried to go back to 2 same thing so I don’t know what he’s going to do. I have CLL

[Fogey in reply to 5214]

That’s an awful predicament to be in, 5214. I think I would be discussing trying one of the several alternative treatments. Hope you find a solution. Alternatively you might try taking one and a half pills daily? Best wishes anyway.

[Zigster49]

Is your blood pressure relatively low? I have been on Acalabrutinib for 13 months and Venetalax for 9 months. I was instructed to drink at least 50 oz of water a day, which I have done. I have consistently low bp, even with medicine (midrodrine). The occasional dizziness I’ve had over the past year has become more frequent. I consulted with my PCP two days ago and she told me to add electrolytes to the water I drink. She said that too much plain water can strip the body of minerals. It’s too early for me to tell if it’s helped my bp, but I haven’t had a dizzy spell getting up from a chair since starting the electrolytes.

[Fogey in reply to Zigster49]

That’s interesting, Zigster49. I once heard a lecture by a Professor of Forensic Science who said that, when guys go out on a bender drinking a large number of pints of beer, it’s actually the water in the beer that’s toxic - washes out all your potassium and sodium and other essentials. What brand of electrolyte do you add?

My b.p. Is fine and my blood oxygen too. I might take your tip. Lots of water and electrolytes. I have Diolaryte in the house.

Thanks and good wishes.

[Zigster49 in reply to Fogey]

My doc recommended Vitalyte which I get through Amazon (US)

[SofiaDeo in reply to Fogey]

That's not quite the case re:excess alcohol consumption:

chemistryviews.org/details/...

[Fogey in reply to SofiaDeo]

I was a university professor of Chemistry. I think you’ll find that I specified consuming large quantities of beer, typically on a Glasgow stag night bender more than 12 pints in a shortish time! Under these conditions, the washout of minerals is considerable. The article you quote applies mainly to low volume high-alcohol-strength consumption.

[Skyshark in reply to Fogey]

Ooer. Late 70's cheap sprits nights, rum, whisky, vodka, gin 15p a shot. The MO was a pint glass, 8 shots of rum, fill up with coke. Usually did three but one summer evening there was a free BBQ and the Pirates (ex Johnny Kidd) were booked, started early so I did four.

The Student Union bar had gone bust the year before I started. The brewery that took over fixed the beer price at working man's club prices. Student ents had an excellent run of bands (Toyah, Skids, TRB, Steve Miller Band, The Motors, Dire Straights, John Otway, many held to contract with charting hits) that drew capacity audiences and made profit. It had to go or they clawed it back and the budget next year would be cut, so we pissed it up the wall.

[Fogey in reply to Skyshark]

Yes, happy days! But I was lecturing at uni then and it sounds like you may have been the nightmare kind of student who came to the post-lunch Chemistry lecture straight from the Union and threw paper darts and rolled empty cans down the theatre stairs while my back was turned!? 🤣😉

[SofiaDeo in reply to Fogey]

Apologies, I think I poorly worded my earlier statement. I intended to say, the mineral washout isn't the only problem! Hmmm I've got to stop posting when tired lolol.

[Fogey in reply to SofiaDeo]

😀

[Walkingtall62 in reply to Fogey]

Interestingly I have just been out and bought diarolyte - blackcurrant flavour!

[Fogey in reply to Walkingtall62]

I prefer the lemon flavour 😉😀

[rafew]

thanks for the post. I’ve been on Acalabruitnib now for about 2.5 years and I still get dizzy from time to time. I’ve mentioned it to my doctor, but he doesn’t seem to be concerned.

[Fogey]

I find dizziness to be quite debilitating. Not sure I can drive and avoiding social events etc. If my doctor wasn’t concerned, I’d get another doctor. On the other hand, you don’t sound too phased by it and, if it’s only occasional, then it’s something you can live with. Mine is constant but my doc says it might pass. Fingers crossed. Good wishes.

[Suzie42]

I've had dizziness since being on Acalabrutinib from February this year. Its a big nuisance but Consultant is hoping I will get used to drug and side effects will get less. Sometimes it's worse and I just feel like lying down,but on the whole I'm living with it

[Fogey in reply to Suzie42]

Thanks, Suzie42. My consultant is hoping for the same. Not ideal. I find it very disorienting and unsustainable in the long term. Currently trying vertigo medication as suggested above by Katie. It might be helping. Thanks for your response. It’s good to know I’m not alone in this. Best wishes.