Venetoclax and muscle/joint pain in just one area ?

[Moggn]

I've seen a few posts from people experiencing joint/muscle pain while on Venetoclax and am wondering if this might be cause my shoulder problem.

Started Venetoclax in August and ramped up to 400mg over 4 weeks and have stayed there. Started Rituxamib in September and completed that in March.

Sometime around September I developed a pain/discomfort in my left shoulder.

My body has been pretty deconditioned thru earlier bouts of illness so I thought I'd inadvertently injured myself.

GP initially diagnosed this as a rotator cuff injury and some exercises improved it a bit but the problem persists , particularly at night. I've now had an ultrasound - 'slight inflammation in joint, otherwise Ok" and x-ray "normal, no arthritis".

Has anyone else experienced a joint etc pain issue that is localised and seems to coincide with Venetoclax ?

This is easily tolerable at the moment but i'd like to know what the likely origin is.

Seems odd to be local to a shoulder if a drug side effect.

thanks for reading & best wishes to everyone out there.

Link to related post - Admin

healthunlocked.com/cllsuppo...

[Dawson21]

I could have written this! Same issue with my left shoulder. Tolerable during the day but can't sleep on that side. GP has referred me for an ultrasound scan and prescribed a topical ibuprofen gel. It would be nice to know that it was the Venetoclax, then I could look forward to a cure when I stop!

[Moggn in reply to Dawson21]

Our treatments are same and almost in parallel !Likewise , would be good to know V was the cause and that in about 15 months they will both stop!

When did your shoulder problem start ?

Did you have any other V side effects ? I had a bad first week reaction and then some nausea thats been resolved by now taking mid evening meal, all ok for about 3 months now

if you make any progress please let me know by reposting into this thread, as I will do.

[CycleWonder]

I had pain in my shoulder that developed due to a cycling accident. I broke my ribs which punctured my lung. I developed a plural effusion which turns out to be the body rushing fluid into the chest cavity to help heal my lung.

The nerve that enervates the lung joins up with a cluster of nerves in your left shoulder, and some nerves from that cluster enervate your arm.

I mention this because I could avoid this pain by sleeping in the recliner chair. This stopped that nerve from being irritated and making my shoulder hurt.

I wonder if your nerve is being irritated when you lay down. Not being a doctor, I don’t know the mechanism involved pertaining to Ventoclax. It could be a different problem totally unrelated to Ventoclax.

It concerns me that it’s your left shoulder and hurts after laying down.

[Moggn in reply to CycleWonder]

Thanks for getting in touch. My GP now suggests similar idea to you, that it might be referred pain from a pinched nerve around neck, since shoulder itself looks ok.I've never had any injuries that might underlie this.

Yes, it certainly may not be from the venetoclax.

I see my haematologist in a couple of weeks. He has a regular contact with a Dr who was on the venetoclax development team and I'll get him to follow up about the mechanism etc.

Also planning to see another physio who maybe able to feel a cause, or give better relief exercises.

[cllady01 Former Volunteer]

I have left shoulder pain which often has a burning type pain and the burning most often includes the left side of my neck.

I am taking Venetoclax.

I do not think Venetoclax has caused my pain. I looked online this morning for possibilities for left shoulder pain. The following is a site that lists left shoulder pain possibilites and gives a description of the pain for each possibility.

My situation is most likely a neck nerve impingment or a spinal disc bulge.

I hope you can find your way to a physical therapist (which I will be doing if this keeps up and does not lessen/disappear after I have done some of the exercises I have found that do seem to take away the intensity with just one set of the exercises.

Since you have had the inflammation sited with the xrays, a physical therapist should be your first try (also, if the pain is intense with movement, you may need some medication--but anti-inflammatories need to be cleared by your CLL Dr.

Best wishes for relief--pain is quite wearing on the entire system.

shoulder-pain-explained.com...

[Moggn in reply to cllady01]

Thank you, yes I think next step is a physiotherapist.

[roszika]

Definetly- I was on V for 2 years and while on it and since stopping a year back I have had neuropathic pain in my legs and feet, back etc I am sure it is from V- the doctors even the top specialists do not know if it is from the V or not as not a lot of past data info is available since this drug has not been around for that long and only recently being administered to patients more and more. As a retired pharmacist it is a well known fact that it takes some years to see apparent side effects that are attributable to whatever drug, being the case many times over with many drugs over the years so it is very possible that V is the cause

[Moggn in reply to roszika]

Thanks Rosalia . I’m sorry to hear about your leg neuro pain. My daughters father in law has that from FCR treatment - he also has CLL - and it’s tough. My pain is infrequent and mostly tolerable except for the impact on sleep.Yes I agree about the limited side effect data. Seems to be mostly from early trials and not much effort collecting data post launch. Hope you are going well. V seems to be working well for me so far apart from this issue so I’m hoping it doesn’t develop further. I really want to complete the 2 years and maximise chance of reasonable period of remission.

[Handley]

Hi there! I'm interested in your progress as I shall be embarking on V + R this summer. As for the pain; I have had 'frozen' shoulder/rotator cuff injury twice now. Both in different shoulders and not following any specific or identifiable causal event. However, if you google it all, you will see that the pain usually is very sharp and limited to when you over-extend into the 'no-go' area which hurts. For example, tucking your shirt into the back of your trousers of scratching the back of your neck. In both cases, I self-cured (it just got better) but it took 18 months to do so. I'm glad I didn't have surgery and that I was patient!I see you are my age too, so good luck with it all. My guess is that you will know if it is a frozen shoulder. See harrogatehealthhub.co.uk/sh... which I found really helpful. Kind regards - Handley

[Bulwinkle]

I had my last hip THA done 3 times before my CLL treatment started(Obinutuzumab/Venclexta) now in about 7 months of treatment and I do find that muscle and joint pain has greatly increased. My hip has had revision Surgury and I also just had a complete thickness test and thus repairs to my rotator about s month ago now. Oncology had me stop and restart Venclexta for a week before and after rotator repair. I have found that furring all off this since starting treatment any joint that had some issue like arthritis bothers me a lot more and as far as pain from surgical related repairs like my hip and shoulder are very sore. My hip was not so much trouble and felt pretty good but as you also hinted that nights seem to be very noticeable. My joints and muscles seem to ache and throb sometimes that I just can’t sleep. Not getting a lot of help from medical people on this with the exception of some pain medicine ( my CLL treatment started when then found my abdominal pain was sure to navel orange sized lymph nodes pressing on internal organs. I thought my left kidney was restricting again. Yes, I admit I have somewhat of a history of medical troubles since the age of 20 in 1980, I’m 60 now. Supposed to have an annual wellness check in with my primary care doc today and I have to plead for more better pain medicine and/or referral to a pain specialist. This really bothers me and makes me feel like oncology is not really wanting to help me with that area and all of this started with the large lymph nodes this last December. Obinutuzumab infusion is what I got for Christmas. I wish you good luck and maybe be more vocal than I was with the oncology folk’s earlier. I’m hoping things go OK today for me.

[Moggn in reply to Bulwinkle]

I’m sorry to hear you have a lot to manage there. It all does seem to need a pain specialist.I’m getting by ok without any extra meds. I hope you have some tangible help coming from today. Best wishes.

[Bulwinkle in reply to Moggn]

Thank you Moggn, my PCP doc was very helpful and truly seemed to be concerned and wanting to get involved. I should add that as far as the shoulder and hip goes, there was previous injury there earlier in my life. We get old and those things seem to come back and haunt us. I get that as I know I'm getting old. The CLL treatment does seem to amplify any aches and pains I already had. I've also wondered if the fact that I had been on high doses of Levaquin a few times in my life had weakened certain tendons/ligaments. Thus lending a hand to easier injury

[Bluepup60]

Interesting. I have also had left shoulder pain since being on Ven. It's mostly when I reach back or sleep on it too long. I'm notorious for over doing it, though, so I figured rotator cuff or similar injury. Was just going to ride it out for awhile.

[Moggn in reply to Bluepup60]

Thanks for getting in touch. There are now 4 of us with one problem shoulder coinciding with V. We might just be a bit more susceptible to mild injury ? Hope the V treatment is otherwise going well for you.

[ChattahoocheeBoy]

Had a thought about similar upper shoulder pain when it was proposed that statins caused pain in some patients. Remedy was to also take a quality COQ10 capsule daily…assume can’t hurt to try or ask ur doc?

[Moggn in reply to ChattahoocheeBoy]

Thanks, that’s an interesting idea, it may actually be a statin driven problem tho I’ve been on a high dose statin for about two years prior. I’ll probably just tolerate the discomfort rather than introduce another med tho.

[ChattahoocheeBoy in reply to Moggn]

CoQ10 is not a medicine but a dietary supplement…like vitamins etc. I take one when I take Crestor at night which was recommended when lived in Europe.

[SofiaDeo in reply to Moggn]

Virtually everyone on a statin should also be taking CoQ10 IMO, and this recommendation first started in the pharmacy world shortly before the first edition of the pharmacy reference text "Drug Induced Diseases", published under the American Society of Health System Pharmacists, first came out in 2005. If anyone here is taking a statin type of drug, I strongly recommend you discuss adding CoQ10 with your doc, especially if you are having "aches and pains" of any sort. I had a patient able to abort a sinus surgery after adding CoQ10, his statin was causing sinus pain that mystified the docs to the point where they were going to operate (this was mmm 15 years ago). Some studies claim the "newer type" statins don't cause the same side effect profile as the original, simvastatin, where this is a known side effect from CoQ10 depletion, but I am unconvinced. A trial of CoQ10 doesn't cost too much (as a supplement, very few US insurance companies will pay). It's moderately expensive, but look for a quality brand that does batch testing. I don't get the "Costco" or "Walgreens" stuff here in the US, but I don't buy the ultra expensive ones either. There are good companies everywhere that do quality control batch testing of their products, you just need to find one.

[Gisygirl]

I have been on Venclexta for nearly a year but about a month ago i developed pain in my right shoulder. It is most painful when I raise my arm up or lay on that side in bed. I am going to my regular doctor to ask for an xray. It may not be from the medicine but this will rule out other possible sources. I find it interesting that a number of people are having this same thing happening.

[Moggn]

Sorry to hear you have a problem too. There are now 3 of us with a single shoulder problem coinciding with Venetoclax. On balance I think I may prefer if mine is a side effect of V, than say arthritis , as long as it doesn’t get worse and goes away when I’ve finished the V treatment. I hope your V treatment is otherwise working well for you and that there’s some relief for your shoulder.

[NaturalWaze]

Me, too!I’ve been on Venetoclax since March 2021. In October I started complaining about hip and knee pain. X-rays showed nothing wrong. Two months ago came the upper arm pain (which I believe is the shoulder/rotator cuff pain you are speaking of). Just reaching for something causes severe pain! And I can’t reach behind me (like to tuck in shirt). I was seeing a chiropractor and we assumed it was from my neck. Then the pain started on the other arm. Someone posted last week about pain on Venetoclax and that’s when it hit me that this all must be from Venetoclax. I spoke with my hospital’s pharmacy yesterday and she said 29% of those taking V experience muscle and joint pain. I was so surprised… also don’t know why my CLL dr thought these pains are unlikely to be caused by V??

I stopped chiro but wonder if physical therapy can help?

NW

[carnvellan in reply to NaturalWaze]

I have joint pain too in the lower back and hips since being on Venetoclax. I'm interested in what your hospital's pharmacist says: that 29% have pain from V. Can you ask her for the research authority for this as my consultant says it is rare?

[Moggn in reply to carnvellan]

Hi - prompted by naturalwaze post referring to 29%, I searched harder and found that % in a report of side effects in a trial of I think 326 people (as usual, I can’t find it again). So far in this thread there are about 6 responses with one shoulder pain and a similar number pain in back and/or legs, con-inciding with Venetoclax and not otherwise explained .

[NaturalWaze in reply to carnvellan]

Sure, I will call pharmacist and ask for the research. I am curious, too.

[NaturalWaze in reply to carnvellan]

Here is the document the hospital's pharmacist sent me. I haven't read it so don't know where the 29% is mentioned...

nejm.org/doi/full/10.1056/n...

This is the package insert mentioning side effects:

rxabbvie.com/pdf/venclexta.pdf

NW

[carnvellan in reply to NaturalWaze]

Thanks. I've read it now and cannot see where the pharmacist got this 29%. The adverse events are set out clearly in a chart. Musculoskeletal and connective tissue disorders were reported in 2.8% of patients treated with Venetoclax and Obinutuzumab. The only 29% figure is for thrombocytopenia and that is something quite different.

[Moggn in reply to carnvellan]

Hi again. Yes that’s the document I saw and couldn’t find again.Page 17 has table for V as monotherapy for CLL/SLL and 29% with musculoskeletal pain.

I now see there’s a table on page 15 , for V + Rituxamib which is my treatment and it doesn’t list musculoskeletal pain or anything similar, so presumably < 10% .

Which seems a bit odd, maybe I’m missing something.

[carnvellan in reply to Moggn]

Are we looking at the same paper? The link from NaturalWaze above is to a study of V&O against chlorambucil & O. It does not refer to treatment with V alone.

[Moggn in reply to carnvellan]

Link to the paper where I found 29% is rxabbie.com/pdf/venclexta.pdf This is the Prescribing Information (57 pages), which I got to via MedicalNewsToday.

[Moggn in reply to carnvellan]

Sorry, yes the paper I found is the same as the second one that NaturalWaze posted - relevant tables etc are in pages 15 to 18.

[Moggn in reply to carnvellan]

I’m glad I didn’t see this document before starting treatment. I would of course still gone ahead but would have been a bit worried about the range and frequency of side effects.

[NaturalWaze in reply to Moggn]

Yes in looking at the side effects, I felt like I had every single one!

[SofiaDeo in reply to NaturalWaze]

I am also looking at this, and since the study comparing (obin + V) against (obin + chlorambucil) was *matched 1:1 for additional disease states*, and 40-odd percent of each group already had musculoskeletal/integumentary disease (page 46, table S2) this also confuses the issue IMO. Arthritis or joint disease was possibly lumped into this category, I don't see any "inflammatory" or "auto-immune" subgroups, but any of the other pre-existing disease groups seem even less likely. So all of these patients had other diseases, which likely includes arthritis especially with the median age being 72.

And I am also looking at the Adverse Events reported on Page 50 of the Supplementary Appendix and can't find any joint or muscle pain Adverse Effects reported. So the "29% joint pain" statement is unclear. Perhaps that person is actually looking at data from a trial like MURANO or a non-CLL trial? Because the full prescribing information doesn't give a breakout by adverse reaction type, just states that musculoskeletal pain is among those others listing a >=20% possibility.

RE:side effects, sometimes reading about all of them makes us see them more! Like the "med student syndrome", where we start thinking we have many of the symptoms as we start learning about the various diseases lolol.

Excerpt from full Venclexta Prescribing Information in the US

[NaturalWaze in reply to SofiaDeo]

So it sounds like the hospital pharmacist was not correct in her statement of 29%??(I have not read the studies - I never understand them - but based on the responses here…)

[SofiaDeo in reply to NaturalWaze]

Unless the pharmacist can supply a specific source for the statement of 29%, I would say they misspoke. Perhaps they have access to more specific data, other than the package insert with prescribing information in the US "greater than 20%". Or they misread or misstated the 20% as 29%, who knows.

[Onmytime]

I experienced a great deal of bone pain on Venetoclax. Some random and some isolated. I completed my O&V treatment 3 weeks ago. The random pain is gone! In fact, I’m far more agile now getting up from a long period of sitting. Only pain remaining is the two isolated areas - my thumb joint and my right shoulder at night! Never had any pain or injury in those areas prior to Venetoclax. Hopefully, it too will subside soon!

[Psmithuk in reply to Onmytime]

I’m so pleased to read this! 17 days more of Venetoclax and then hoping some of these aches will improve. .Chrisx

PS I’m still glad and grateful I was able to have Venetoclax, an amazing drug.

[Moggn in reply to Onmytime]

thanks for your post. That’s encouraging that your pains are eased - and great for you!. I have 15 months to go on V. I’m about to go see a physiotherapist who thinks she might be able to help with my shoulder.

[SofiaDeo]

I got woken up by left shoulder pain early this AM, and figured out I have a knot in my left back shoulder blade. Massaging the area makes me realize the muscle running up to my neck is knotted and spasming. I haven't been diligent with my stretching exercises, and I know I "hunch" my shoulders and my posture lately has been poor. Any chance some of this applies to you?

[Moggn in reply to SofiaDeo]

Hi, when this first started it was very uncomfortable and constant up into my neck. similar to your description.I had some help from a physio by Zoom and an easy stretch exercise set - - hands each side of a doorframe and lean forward

- pull my head down towards armpit

- link hands behind my head

relieved then disappeared that, but other pains in the shoulder are persisting .

Sometimes just niggly , sometimes sharp, sometimes feels muscular other times feels like bone grinding.

I don’t think it’s currently a postural thing, but I hope to see a physio in person next week.

[SofiaDeo in reply to Moggn]

Any chance this could a fibromyalgia-type thing triggered by food additives or stress? I found when I eat standard "approved" chemicals in food, or have extreme emotional or physical stress, I get symptoms. Although a number of us are beginning to comment about muscle pain and Venclexta, similar to how people started reporting ibrutinib side effects. I know I have pushed myself physically without adequate stretching, and have been emotionally upset a lot lately. So I am not surprised I am having symptoms.

[Moggn in reply to SofiaDeo]

Yes, those are possibilities. Nothing has (consciously) changed in my diet (which is pretty good but who knows. Certainly there are ever-accumulating stressors. I don’t feel I worry a lot, but a succession of illnesses, other side effects plus Covid precaution activity limitations etc are definitely getting into my head a bit. Im sure there are other obscure physical effects from fairly constant emotional tension.Another possibility is that as I’m just so de-conditioned from so many life disruptions that I’ve just caused some little injury in there that’s not showing to the x-Ray or ultrasound, and hurts a bit more than it should for the same reason.

I’ll post after I’ve seen the physio. Thanks for your thinking on this, I’ll raise your ideas with her. Best wishes to you.