Acalabrutinib: Hi there.Has anyone been on... - CLL Support

CLL Support

23,784 members40,581 posts

Acalabrutinib

Jsceltic67 profile image
28 Replies

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.

Written by
Jsceltic67 profile image
Jsceltic67
To view profiles and participate in discussions please or .
Read more about...
28 Replies
Walkingtall62 profile image
Walkingtall62

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

Jsceltic67 profile image
Jsceltic67 in reply toWalkingtall62

Thanks very much for the information, appreciate it.Thanks John

Panz profile image
Panz in reply toWalkingtall62

If you develop a headache remember just a little caffeine will take care of it. It is a very good medicine.

All the very best!

Panz👍🙏😊☕️☘️

Stamphappy profile image
Stamphappy

👋 Just want to wish you the best! 😊

CLLpa profile image
CLLpa

i hope it goes well

Nucleusman profile image
Nucleusman

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

Nucleusman profile image
Nucleusman in reply toNucleusman

factor 50 sun screen

Jsceltic67 profile image
Jsceltic67 in reply toNucleusman

Thanks very much for the reply appreciate it.John.

Kwenda profile image
Kwenda

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

Daisy396 profile image
Daisy396

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.

Unglorious profile image
Unglorious in reply toDaisy396

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?

Jsceltic67 profile image
Jsceltic67 in reply toUnglorious

Not on stating,just a blood pressure tablet only 2.5,thank you for the reply. John.

Daisy396 profile image
Daisy396 in reply toUnglorious

No, I’m not on any other medication. The joint and muscle pain is pretty bad. But the Acalabrutinib is working so I tolerate it.

Unglorious profile image
Unglorious in reply toDaisy396

Try doing stretching exercises and using a massage gun, recommended to me by my physiotherapist.

Ajstotts profile image
Ajstotts in reply toDaisy396

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.

Westie11- profile image
Westie11- in reply toAjstotts

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)

uihwki profile image
uihwki

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!

Bobby9toes profile image
Bobby9toes

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.

Jsceltic67 profile image
Jsceltic67 in reply toBobby9toes

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.

Se_re_n_geti profile image
Se_re_n_geti in reply toBobby9toes

About the Acyclovir: Are you take it as long as you take Acala? Thanks, Maria

Bobby9toes profile image
Bobby9toes in reply toSe_re_n_geti

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.

Se_re_n_geti profile image
Se_re_n_geti in reply toBobby9toes

Thank you very much for the quick reply. I have been on Acala about a year, first line treatment. Al the time with Acyclovir. I just wondered how long to take it. I hope it protects me from the viruses around here, especially in the winter season. It seams like better to continue with that.

Sunrisejoy profile image
Sunrisejoy

Hello, thanks for posting, hope you are well.Starting it in a few weeks. Same, starting at 100 mg because I have permanent afib.

Jsceltic67 profile image
Jsceltic67 in reply toSunrisejoy

Hope it works well for you as well,only on 1 per day for 2 weeks to see how I do.ok so far,back on 22nd Jan blood test and see doctor.😁

Sunrisejoy profile image
Sunrisejoy in reply toJsceltic67

Looks like I will be right behind you with starting and blood work etc. Cardio signed off on it today. 👍

Eucalyptus22 profile image
Eucalyptus22

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.

Jsceltic67 profile image
Jsceltic67 in reply toEucalyptus22

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.

Jsceltic67 profile image
Jsceltic67 in reply toJsceltic67

Morning here in Spain,been on the tablets 2 weeks now,been ok,maybe a slight headache now and again just take a paracetamol, go to see doctor today,had blood test on Wednesday, good luck to you.Thanks John.

Not what you're looking for?

You may also like...

Acalabrutinib and Swollen Feet/Ankles

First I apologise if this has been readily discussed before. My success with the search tool here...
ScruffyDuck profile image

Acalabrutinib

Hi all, had my appointment with my consultant this afternoon. All good news. Heamaglobin 116 up...

Acalabrutinib

Hi everyone, I'm new here. I started on Acalabrutinib in February 2022 after being in remission for...
BethIlia profile image

Acalabrutinib

Saw consultant this afternoon. All still good and on track. White count down again to 33 (normal...

Acalabrutinib

I just started my treatment about a week and a half ago. So far doing great. Very minor diarrhea...
1reb profile image

Moderation team

See all
Jm954 profile image
Jm954Administrator
Newdawn profile image
NewdawnAdministrator
AussieNeil profile image
AussieNeilAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.