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
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.
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
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
Thanks for your response
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
Hi Lalitpur,
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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.
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Len
Thanks a lot
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to anybody with lower back pain.
