Hip pain

[Cottager1989]

I started V/O treatment in April of this year. Finished O in September, will take 4 V daily to end February. Oncologist says I’m in remission and bloodwork agrees. Side effects are getting worse every day and include pain in both hips and lower back. Bad in morning, better during the day, bad again in evening. It makes it difficult to sleep as I ache. Tylenol not help. I use Voltaren cream but no relief either. Is this due to a build up of V? Any comments would be most welcome. Thanks.

[lankisterguy Volunteer]

Hi Cottager1989,

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Unfortunately with CLL many of our treatments have been connected to joint pain (Arthralgia) and this link reports 10% or more of patients on Venetoclax have some level of joint or back pain drugs.com/sfx/venetoclax-si...

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I suspect that there are a higher percentage that report arthralgia as a side effect for the BTKi treatments like Ibrutinib.

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You should let your medical team know about this and ask for help finding a way to reduce the issues, either by pain medicines or if those are not effective, then possibly a dose reduction of your Venetoclax.

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Please look for the box on this page labeled: "Related Posts

*Shoulder and hip pain

*Hip Pain on Imbruvica

*Hip pain

*Severe pain in hips!

*Can CLL Cause Hip or Back Pain

To see other similar past discussions.

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Len

[Cottager1989 in reply to lankisterguy]

Thanks, I will talk to my oncologist again.

[CoachVera55]

Wow I am so sorry, I was expecting to hear after remission that the worst was over. This stuff sucks, I pray they find a solution🙏🏾 Too many twist & turns, tis CLL Life🤔

[AussieNeil Partner Administrator in reply to CoachVera55]

In my experience, the hip and lower back pain resolved within a a couple of months of finishing treatment.

[Cottager1989 in reply to AussieNeil]

I hope so! I have heard it takes a few months to feel good again.

[Winegrape in reply to CoachVera55]

I developed bad joint pain in my arms, hands and knees while on treatment with Venetoclax last year. After finishing the V the joint pain did go away. So it should get better for you. I don't think it stays.

[Cottager1989 in reply to Winegrape]

Glad your pain went away!

[DinosaurDad]

I was on the V/O protocol last year. About 6 months in (around the time I finished the O dosing), I had very sore knees - to the point of finding it difficult to walk. My oncologist referred me to an endocrinologist (didn't find anything unusual) and an orthopedist. The orthopedist found several mechanical injuries like torn meniscus, but also found microfractures underneath the articular surfaces. She suspects, but doen't know for certain, that the steroids given as part of the treatment may have had something to do with it. That sharp pain lasted about 6 weeks for me; since then, I've been on strengthening exercises and am working with a physiatrist to try to avoid surgery. Still am not sure how much the O/V treatment caused all of this.

[Cottager1989 in reply to DinosaurDad]

I was dealing with the pain fairly well. Then I felt a bad pull in my thigh when playing pickleball. This continues to hurt, then the other hip and back got worse. My physiotherapist has given me some exercises which have neither helped nor relieved the ache. I’m also a walker and that too makes me hurt. I hope you feel better!

[skipro]

Hi

I'm an orthopedic surgeon on sabbatical for treatment. If you've had pain for more than a month you should definitely see an orthopedic doc.

The best way to get to the bottom of it is to have imaging of both hips and your spine. X-rays usually come first if I could see you in my office. MRI's would be needed as well as Xray can miss things.

Based on anatomy the spine can cause pain in the back and hips.

Likewise the hips can refer pain to the spine.

So it could be hips or spine or both.

God bless and good luck

Skipro

[Pacificview]

Hip pain, not hip joint pain is a daily side effect for me. Started early on in treatment and has lasted up to this day. Makes it very difficult to sleep regular hours. I can't sleep on my left side due to continued lower level of spleen pain. Can't sleep on my right side due to hip pain. I have been to an orthopedist. Perfect hip joints and no arthritis. So I chalk up this pain to treatment side effect.We are tracking very close with start and end points on VO. Side effects from the start of V O have been very unpleasent for me. If it was not for the carrot of being off treatment possibly for years. I would have quit the treatment the first month. The only thing that has gotten me this far is prayer and the carrot. Also, not wanting to discard a good treatment outcome regimen.

I like you are clinically in remission. I have no back pain, but uppper thigh bone and hip bone are sufficiently causing enough discomfort.

All the best to you and may the outcome of this treatment be well worth it.

[Cottager1989 in reply to Pacificview]

I am so sorry to hear this. I haven’t had a lot of side effects after being off the O part other than the pain. So lucky I guess. My oncologist recommended this regime because she knows I didn’t want to take pills forever, want it done. But she sure didn’t give me much of a heads up regarding side effects. I also find sleeping hard with the sore hips. I have read others saying it goes away after a few months after treatment is finished so I sincerely wish that for you and me! My back pain may be as a result of a ladder fall and a degenerative disc, not V. Thanks so much for your sincere reply. ❤️