Muscle and joint pain.

[Westie11-]

A few days ago I read on here about people who are on Acalabrutinib are suffering with muscle and joint pain. My question is - did you stop taking the tablets or reduce the dose or continue to suffer with the pain? I haven't yet discussed this with Dr's so looking fir advise. Thanks.

[SLLJOHN]

Halve the dosage worked for me

[flyhigher]

Like you, I'm on acalabrutinib and generally stiff, achy and knackered to boot, with my back regularly giving me gyp.

My GP recommended I self-refer to physiotheraphy (easy to do). Had a series of monthly assessments and was given 'gentle' exercises to do at home (12 sessions a week, only of about 5 mins each). Things improved. Now currently have had 2 sessions of 6 each one hour long at the local hospital. Definite improvement. Starting to believe I can start walking again without having to prop up every other lamppost and gatepost.

Also, there was a CLL Support (UK) webinar on Thursday covering fatigue which included muscle and joint pain - wherein the experts conclude that exercise is the best medicine for said nuisances, not reducing meds. It's available online - I really would recommend having a look because I could never understand why, being on acalabrutinib which is keeping numbers at bay, I should feel so tired and achy.

[Westie11- in reply to flyhigher]

Thank you for reply. I generally don't feel tired but must admit don't do too much in one day. I was given exercises to do but think I must have done too much as I think that's what it brought it back again after being pain free for 2 months. So for me taking exercise gently for now.

[CLLquilt]

I am on acalabrutinib without the ability to reduce my dosage and had very similar problems with my joints. Instead of reducing my medication dosage, my doctor suggested glucosamine tablets. While I still occasionally have some minor discomfort, the tablets have helped so much! I take Move Free and can tell you it worked for me.

[Westie11- in reply to CLLquilt]

Thank you, that's interesting as I was taking them some time ago but stopped, not sure why. I will start them again and see if helps.

[MisfitK in reply to Westie11-]

If you lock your post, you'll get more personal answers, but 3 things to try (with doc approval) before a dose reduction (which is the last resort) are:

1. Ensuring sufficient hydration - 80+ oz/day, but not all as tap water

2. A 24 hour antihistamine - 24 hour non-drowsy Claritin or Zyrtec are usually recommended

3. Glucosamine Chondroitin

None of these are certain to work b/c none have scientific proof of working, but are all on the clinical practice side of success (aka, no one really knows why they work if they do work for you).

And as recommended above, you have to stay active as well. Trying to get active from being not active is a hard lift for your body, so getting and staying in an active state should help your body all over.

[Westie11- in reply to MisfitK]

Thank you, I will start by trying the Glucosamine.

[MisfitK in reply to Westie11-]

Just run that through your doc, too. It should be fine, but I always like my doc to know everything I'm taking and for what reason...

[Westie11- in reply to MisfitK]

Hi I have just checked my profile and not sure what I should click to lock my post as I thought it was already locked. As I have changed a setting I would be grateful if you could tell me it is now locked. Thanks.

[MisfitK in reply to Westie11-]

It's part of writing the message (not your profile). For now, if you edit your original message, you can look at the bottom of the post and it should have a box that says "Share: Anyone / This Community Only" - you want to pick this community only to lock it to folks who only are members here vs the entire internet.

PS - You can lock a post when you 1st write it or as an edit if you forget.

[Westie11- in reply to MisfitK]

Thank you, I didn't know that. I always thought it was a setting on my profile. Very much appreciate you taking time to respond. Have a good day.