Hi there.Has anyone been on Acalabrutinib iam starting treatment today,1 tablet per day 100mg,then go for blood test end of month and see doctor to see if they can up it to 2 tablets per day. Thanks John.
Acalabrutinib: Hi there.Has anyone been on... - CLL Support
Acalabrutinib
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Hi, I was on Acalabrutinib for quite a while. Had no problems at all, it was almost ‘my friend’. The only reason I changed was because the capsule was changed to a tablet and I don’t get on with one of the new ingredients (fillets). Enjoy the journey and all the best
👋 Just want to wish you the best! 😊
i hope it goes well
read the leaflet which comes with tablets. A very good and effective drug after 2 years I am in remission but must continue taking. Only side effects I have experienced are bruising which comes and goes also more susceptible to other cancers so stay out of the sun and use factor sun cream every day. It actually works
Many people also take Allopurinol for the first month as you need to flush out the waste products safely
Allopurinol is a medicine used to lower levels of uric acid in your blood and thus protects the
kidneys..
Some also take Co-Trimoxazole
To protect against any infection, particularly any lung infection.
Normally just THREE pills a week only
And don't forget that Shingles is always a threat so take Aciclovir
To protect against Shingles.
Having said that the Acalabrutinib works for myself and many people with minimal side effects.
Dick
I’ve been on acalabrutinib for 2 years now. My only issue is joint and muscle pain, I am in partial remission with no other serious issues. Good luck , I wish you all the best on this medication.
I too used to experience joint and muscle pain when I first started Acalabrutinib, but in my case I think it had something to do with being on a statin at the same time that contributed to the aches. Once I discontinued the statin the pain abated. One of the side effects of statins is muscle pain. Are you taking a statin?
I had the same muscle/skeletal pain after approximately 1.5 years of calquence. After 6 months of pain I started taking colostrum. Pain is gone. Coincidence? Maybe, but I won’t stop my daily dose of colostrum.
Thanks to your reply I am now wondering if my pain isn't going away due to being Acalabrutinib which never occurred to me until reading on here. I pulled a muscle in top part of my arm about 3 months ago and it isn't getting better. Also I suffered for almost a year with sciatica, pain in right buttock and it finally went about 2 months ago but there was always a little bit of discomfort at times as if saying, careful, I am still here!! Now it's back and having to take pain killer. Now wondering if this is all related ? (Been on Acalabrutinib 2 yrs)
Been on acalabrutinib for 7 years. The headaches were pretty bad for the few weeks. Took Excedrin Tension Headache tablets at the recommendation of my CLL specialist - problem solved. It's been a miracle drug for me!
Hi John, I have been taking 100 mg tablet for one year for SLL. After 6 months, I was already in remission. I will need to continue taking it for life. In the beginning, I did have headaches but caffeine and sometimes Excedrin for tension headaches took them away. I was also on Allopurinol at first, but quit due to a bad reaction to it. I also take 400mg twice a day of Acyclovir to prevent shingles. It was a miracle drug for me. Best of luck to you. I’m sure you will do just fine on it.
Thanks Bobby,appreciate the reply,it really helps me feel alot better,it's great we can talk to other people who are going through the same thing. Thanks John.
About the Acyclovir: Are you take it as long as you take Acala? Thanks, Maria
Yes, I will be. My doctor told me it’s an anti viral medication that will protect me from viruses such as shingles. I have no side affects from it.
Hello, thanks for posting, hope you are well.Starting it in a few weeks. Same, starting at 100 mg because I have permanent afib.
I was on Acalabrutinib for 4 years and then started having joint and muscle pain so dropped to 1 tablet per day. Been on 1 tablet since September and so far no problems. My bloods are checked monthly now.
Thanks for the reply,appreciate it as good to know how people are getting on with certain drugs,been just a week now been on them,just a slight headache sometimes, not bad.Thanks John.