Venetoclax and back ache

[nigeldodd]

Since starting Venetoclax in April 2022, back ache and sciatica has got progressively worse. X-rays reveal spondylolisthesis and cauda equina syndrome. I can't walk more than 100m now but before I regularly walked 10 miles up and down hill with a group.

Strangely I can cycle, so I do that to keep fit.

It may be that these conditions have nothing to do with my CLL treatment but I am posting this in case anybody else has noticed a correlation. Thanks

[studebaker]

I am not sure it is Venetoclax or combination of age, arthritis, stenosis, bulging discs and pinched nerve, but my back is really bad and deteriorating fast. I have been known to have problems with L4 and L5, but when my neurosurgeon showed me MRI of my back I couldn’t believe it.

Therefore, I think all of the above might be the culprit. Physio,Osteopathy Chiropractor and Acupuncture didn’t help and I am not a candidate for the big surgery I take time release Hydromorphone and had epidural Cortisone and now waiting for burning of the roots of nerves in L2 and L3.

I hope you will find some help as back pains are horrible.

Dana

[Newdawn Administrator]

I’ve been similarly affected but I don’t believe Venetoclax is the main culprit. It may however have exacerbated it.

Nigel, if you’re using your actual name as your avatar, I’d suggest restricting your posts to the community as they can find their way onto the net otherwise.

Regards,

Newdawn

[BobbyFour]

I don’t know if this helps, it I have deteriorating discs and back issues that are unrelated to CLL, just bad luck and age. There are downsides to the increasing years for sure! So as you suggested, it might just be coincidence.

[carnvellan]

The Venetoclax is definitely the cause of my severe joint stiffening. It occurred when I was taking 400mg. After cutting the dose first to 200mg then to 300mg, the stiffness has gone.

[nigeldodd in reply to carnvellan]

Thanks to you (and to everybody who has replies). Do you have a theory on what mechanism it is whereby Venetoclax causes stiffness? Can you give some more details of the stiffness, please?

[carnvellan in reply to nigeldodd]

Hi Nigel - I have no idea about the mechanism. While on 400mg my neutrophils were quite low so maybe there's a link there. But for me after being on on 400mg for a couple of months with no problems, I found that i was so stiff that I would wake up with the pain. It was focused around my lower back and ringing around to my hips and front so that getting out of bed was painful. Walking was hard as I could not stand up straight. Paracetamol throughout the day and night helped. I generally have a high pain level tolerance but this was extreme. It disappeared when the dose was dropped to 200mg. And my neutrophils went up and have continued up now that I am being maintained on 300mg.

[nigeldodd]

Thank you carnvellan. My neutrophils were 1.1 at the beginning of treatment in April and are now 3.6. They were as high as 4.84 back in 2018. I don't know if this is in any way connected with back pain. The counter-evidence is that the back pain has got worse since April.

My symptoms are similar to yours.

[nigeldodd]

carnvellan, I decided myself to take an unauthorised reduction from 400mg to 300mg for a week to see if it would have an effect on my stiffness and sciatica. I'm at the end of that week now. It is difficult to be objective, though I do stretch exercises in the morning and I think I can be a bit objective about how far I can rotate my lower torso. My first thoughts were that there was a reduction in stiffness and pain, but now I don't think there is any sustained measurable difference. So I shall resume 400mg tomorrow.