Is my sore lower back pain a side effect of Ac... - CLL Support

CLL Support

23,335 members40,042 posts

Is my sore lower back pain a side effect of Acalabrutinib ?

Lalitpur profile image
10 Replies

I was diagnosed with CLL 3 months ago and have been on Acalabrutinib since then with excellent results that put me close or into the normal range - white blood cells down to 12 from 56, red blood cells up to 125 from 111. In the past month I have started to feel severe lower back pain and I wonder if this is a side effect of Acalabrutinib, or indeed CLL ? I'd appreciate any insights if people have experienced the same.

Thanks Faj

Written by
Lalitpur profile image
Lalitpur
To view profiles and participate in discussions please or .
Read more about...
10 Replies
flyhigher profile image
flyhigher

I wish I knew! I've been on Acalabrutinib for getting on for three years now. My back's been bad over the weekend and only this morning I had a 'twang' which would have brought me up with a start except I didn't dare move. When I moaned about my dicky back (it comes very quickly and goes very slowly) to my haemotologist at my previous three-monthly review, she mentioned, as though in passing, I had an disk affected by osteoperosis. This rather caught me by surprise because it was news to me and I was sufficiently taken aback (pun intended) that I didn't ask why no one had bothered to tell me before (and indeed how anyone had even found out). I've no idea whether this is age related or CLL related or what, but do intend to discuss this in some depth when I have an actual face-to-face in August (first ever, and about time too, since diagnosis because of Covid).

So, to answer your question, no insight as such but you're not the only one.

Lalitpur profile image
Lalitpur in reply toflyhigher

Thanks for your response

mush56 profile image
mush56

Hi I had to stop Acalabrutanib because of severe back pain & bone pain . My specialist tried with reduced dosage but it still didn’t help i stopped taking it and within days the pain went . Hope this helps and take care

Lalitpur profile image
Lalitpur in reply tomush56

Thanks for your response

Nucleusman profile image
Nucleusman

I have had bad back problems for years and had an epidural injection in February but I think the Acalabrutinib has made it worse. No telling

Lalitpur profile image
Lalitpur in reply toNucleusman

Thanks for your response

Gampo profile image
Gampo

Hi, I’ve been on Acalabrutinib for 7 months. From a month in, I found my back was much stiffer than before - I used to be able to touch my toes and now can’t get below mid calf without patience and progressive stretching. I read that joint stiffness was a side effect so I put it down to that as I’ve had a tendency to back pain for the last decade. In the last month or two I feel like it’s improved a bit - not the flexibility but it’s less painful. I’m seeing a cranial osteopath once a month and going for Thai massage once a month, both have really helped. I’m also back in the gym working on strength and mobility. I’ve noticed that my lower back has become a seat for my fear, so every time it complains I talk to it, saying there’s nothing to fear and it can let go. Sounds mad but it helps!

Good luck

Lalitpur profile image
Lalitpur in reply toGampo

Thanks for your response

lankisterguy profile image
lankisterguyVolunteer

Hi Lalitpur,

-

As you can see from the answers so far, there is not one simple cause & effect that we can identify.

I've had back muscle pains for 60 years, and physical therapy & stretching exercises would reduce that to manageable levels.

But soon after my 2008 diagnosis of CLL at 61 yrs old , around the time I was first treated with rituximab / Rituxan 63 yrs old, I needed far more PT, and it helped but did not completely cure the issues.

Over the next 10 years, with treatments including idelalisib / Zydelig, ibrutinib / Imbruvica, and venetoclax / Venclexta, I learned that I had lost 2 inches of height and needed 2 back operations to deal with the bone deterioration in my spine. (My father went through similar back problems & treatments 20 years earlier without the CLL or targeted treatments).

During that time we discovered I had low Vitamin D3, low iron, and a stubborn viral infection HHV6a. But my bone density was stronger than normal, yet I had spinal stenosis, facet arthropathy ( a type of arthritis) and disc bulges.

So were my problems hereditary, age related or a result of CLL and my treatments?

The doctors said there was no clear answer, and perhaps all of the above were contributing factors.

-

Len

Lalitpur profile image
Lalitpur in reply tolankisterguy

Thanks a lot

Not what you're looking for?

You may also like...

High fever as side effect of Ibrutinib ?

Hi, I'm new here and follow this blog with great interest. I had 6 cycles of FCR 5 years ago which...
GIDI profile image

CLL is a lymphoid stem cell cancer so why are my myleloid stem cell products falling so much?

I am on Acal for 10 months after 8 years on W&W, 13q unmutated. Doing well with minimal side...

Efficacy and safety of new‑generation BTKis (primarily acalabrutinib and zanubrutinib) in CLL/SLL: a systematic review and meta‑analysis

The meta-analysis of 20 studies on CLL/SLL patients treated with new-generation BTKis was based on...
AussieNeil profile image
Partner

Is fatigue always a side effect of long term use of Ibrutinib?

This post was originally sent as a response to Larington, who last posted 4 years ago! I am new to...
leopardo profile image

Did anyone have MGUS progress into CLL, and after treatment for CLL, did your MGUS improve or no longer exist?

Hi I'm new to the CLL community. My name is Vicki. I was diagnosed with M.G.U.S. (Monoclonal...
Luv2Craft profile image

Moderation team

See all
AussieNeil profile image
AussieNeilAdministrator
Newdawn profile image
NewdawnAdministrator
CLLerinOz profile image
CLLerinOzAdministrator

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.