Just started Acalabritunib....

[hsouter]

Hello, everyone,

My husband just started on Acalabrutinib and has been having sore joints and serious headaches. What can you tell me from your experience that might help him?

Thank you in advance for your kindness....

Heather

[AussieNeil Administrator]

Both are recognised side effects from acalabrutinib, with headaches more common. The good news is that the headaches generally cease after a couple of weeks and can usually be managed by Tylenol/Panadol/acetaminophen with caffeine. Joint pain can take longer to improve.

Neil

[hsouter in reply to AussieNeil]

Thank you for commenting so quickly. I have some information on the drug and some teaching but hearing from people here is just more reassuring.

[Haileybury]

Hi, Heather. I started Acalabrutinib 3 weeks ago. I had morning headaches and diarrhoea for a couple of weeks but these effects have almost gone now. Paracetamol worked for the headaches. Things are now much better and not really a problem. Good luck. David.

[stevesmith1964]

HiI switched to acalabrutinib from Ibrutinib due to mild joint pain. That was 4 weeks ago , so far so good....from multiple posts on other support groups Coffee seems to help keep headaches away....so I drink a lot of coffee, plus Red wine as I like it..

[SLLJOHN]

I changed from Ibrutinib to Alcalabrutinib in February. All was well until about a month ago (headaches as mentioned elsewhere went with caffeine in 2 weeks) when the stiff muscles and joints returned like Ibrutinib. My dosage was halved last week which has improved the joints but still a way to go. The Consultant seems keen to up the dosage again once the stiffness subsides.

[Vizilo]

Same side effects as other contributors. All side effects gone after 2-3 weeks. Couple of cups of strong coffee each morning seemed to work better for me better than pain killers. Good luck and stay with it!!

[nvp815]

I have been on acalabrutinib since January 2018. Same side effects as everyone described including headaches, joint aches, and occasional diarrhea. Remedies that worked for me were also Tylenol and caffeine for headaches. Joint pain resolved on its own. I never took anything for the diarrhea as it was not that severe. I will still experience one or all of the above symptoms from time to time but they are so worth it. Acalabrutinib has given me back my life. My labs are great, lymph nodes are barely palpable, and my energy returned. Encourage your husband to hang in there. Obviously if the headaches or joint pain become too severe, reach out to his physician for guidance if over the counter remedies don’t provide relief. Keep us posted. Sending good vibes!!

Nan

[mk2045]

I encourage you to hang in there with it! I've been on it a couple months and really have had no symptoms to speak of, except loose stools, which has been a perennial issue. I really hope this works for your husband, because it has been good for many of us.

[DoriZett]

Started Year 5 of treatment on Acalabrutinib in January 2021. Mild side effects you and others mention mostly resolved early on. None of the side effects were ever severe enough, or long lasting enough to make me stop this incredible treatment option. I am in partial remission at 95.4% reduction in lymph node size (due to SLL scarring) and all my labs are normal. Stay the course if you are able. Best to you on your CLL journey.

[country76]

I have been on Alacabrutinib for a year. Occasionally I get a very brief headache, just when I realize, oh I have a headache it is gone. Not bad enough to take Tylenol. I drink 2 cups of coffee every morning. Also 2-3 liters of water daily.

Alacabrutinib has also given me my life back. I have noticed recently I don't even have bruises. I almost feel completely normal. My labs are in the normal range and get better with every monthly lab.

[Alasn]

I've been on Acalabrutinib for 6 months. I've experienced those symptoms occasionally.

Alcohol appears to be a factor with me sometimes. After skipping doses for a day, I've found symptoms go away.

All the best

[Hidden]

Hi. I had terrible back bone pain, unbearable so we asked Dr. to reduce to 1/4 dose per day which equaled 1 pill every other day. I needed oxy for initial pain and I chose not to live like that for the 3 months or so....Bone pain stopped all sorts of other side effects but not intolerable. I just moved to 1/2 dose or one pill daily. Spleen reduced on 1/4 dose, it was pretty huge. I'll try and keep you posted on how 1/2 dose reacts. Bruising is very bad on me and lethargy is ridiculous. This is all Calquence.