Venclexta and achey legs

[Wiggynugget]

I just started Venclexta and my legs are really achey have anyone experienced this do you think it's related to this drug

[Seok]

Hi Wiggynugget

I started developing swollen fingers, swollen ankles, with painful feet and achilles tendons in September 2021, 3 months into taking Venetoclax.

Since my CLL Dr didn’t think they were side effects of Venetoclax; my GP referred me to Rheumatologist as my CRP and ESR were very high. She ran a bunch of tests and found that I possessed HLAB27 genes, indicative of psoriatic arthritis; Sulfasalazine and Otezla were prescribed.

I stopped Venetoclax in November 2021 as my blood test showed MRDu. Recently, I had to stop sulfasalazine and half the dose of Otezla due to side effects; yet my painful feet and tendons continue to improve despite reducing arthritis medication. So, it made me wonder if indeed the arthritic symptoms were actually side effects of Venetoclax ……??

Seok

[Wiggynugget in reply to Seok]

Thank you for your reply! The pain was so intense I called the dr. On call and she prescribed a pain killer, and left a message with my dr. I will talk to him as soon as possible. I'm so happy you found relief!

[Wiggynugget in reply to Seok]

I'm sorry Meant to send that message to someone else. Ya I think it's a side effect! I'm glad they are starting to improve. However I dont think I can take this medicane anymore. I cant handle the intense pain

[Seok in reply to Wiggynugget]

Yes, the pain was unbearable for me too. Dr allowed me to reduce from 400mg to 300mg. Maybe a dose reduction will help? All the best for your next consultation 🙏🏻

[Wiggynugget in reply to Seok]

I just started the 2 day did me in .I'm in pain constantly. The dr. Precribed me pain killer and wants me to keep taking it! I'm afraid of it and the pain killer too, but I will try.

[Seok in reply to Wiggynugget]

Oh dear Wiggynugget, did you mean you’ve just started to take 20mg of Venetoclax 2 days ago?

[Wiggynugget in reply to Seok]

Yes this is my third day I'm on a pain killer called Tramadol 50 mg but I cut it in half. It took the pain away I feel drugged up though. I see my Dr. Monday so I will discuss it with him cuz I cant stay on pain killers!

[AnneHill in reply to Wiggynugget]

I have the same pain with Ibrutinib and am drugged up with codeine. Iv been given Tramadol in the past. I have other pain problems but this is different. The Ibrutinib has worked. I used to do Tai chi and maybe you could try it. I wont go to classes because the covid numbers are high and I want to go swimming.

You might find the pain eases a bit after a while. I seem worse after a 2 week break for a procedure. Anne uk

[LeoPa]

Achey muscles, bones, or tendons?

[Abby-pup]

Yes, achy legs, joints and muscles since starting O & V in August2021. I usually take 2 Tylenol at bedtime and it helps me get a decent night's sleep. I also soak in Epsom salt bath at least twice weekly. That super helps my leg pain. Make sure you tell your doctor about all your aches and noticed differences.

[Wiggynugget in reply to Abby-pup]

I am thank you. I'm happy those things helped you!

[AnneHill in reply to Abby-pup]

I take Ibrutinib and have all those pains. Its sad to read that Venetaclax causes that pain too. I have roving pain. This week its been my feet and then my elbow. My legs are aching and so are my shoulders today.Its strange but if I stop it to have a procedure done it improves but when I start it again it is worse than ever.

My consultant knows I am struggling and I am on a lower dose but I realise it is for the cll. It is playing with fire to stop taking it because my numbers are good.

I drink tea and coffee and I will drink more water. I will try the bath in Epsom salts. I am so stiff its hard to walk but will try to stretch.

Venetaclax can be stopped when you reach umrd but stopping Ibrutinib is taking a risk because it is unlikely that all the cll cells are gone, I was told. Anne uk

[Smakwater]

Wiggynugget,

I experienced achy leg muscles and frequent cramps during and after venetoclax use. More so at night when resting. I have not taken Venetoclax for 27 months now and both the cramps and the aching are much less frequent. I am 61 years old, very active with no co-morbid conditions. During treatment I consumed the doctor's daily recommendation for water which was 64 - 84 ounces daily. I currently average about 50 ounces , however, I am now drinking more juices and coffee as well.

Although the Venetoclax may be the influence, or at least a partner in the influence, here are some questions to consider in the curative process -

Is the ache in the bone, muscle, or connective tissue?

If it is in connective tissue or muscle, is there swelling or coloration visible?

Are your lab counts for CBC and metabolic panel in range, and have you looked for deficiencies? E.g, potassium, magnesium, vitamin D etc... Are your Ig levels good? sedimentation rate? uric acid levels, other inflammatory markers or presence of autoimmune responses?

Are you doing water appropriate to your level of health, fitness, activity and environment?

Are you taking other medications, supplements, alcohol etc...

Is your diet and activity routine adequate?

In addition to all of this remember that biologically you are not comparative to the norm, because you are compromised first with CLL and second with the cancer drugs. Your entire body, blood/immune system, kidneys,liver, pancreas etc... are all subject to abnormal responses in trying to adjust to a multitude of complex influencers. All of your body functions are being overwhelmingly stressed and should not be measured as if they were normal.

Advocate for yourself by staying connected with your doctor and appropriate questions assertively and respectfully. This will help you establish a good base line and provide a record of measure for overcome such challenges.

I hope you get this figured out,

JM

[Wiggynugget in reply to Smakwater]

Oh I am and my oncologist Is looking at my labs My primary said the looked good.of course except for the white blood count. Thank for your good advice!

[Seok]

I’m totally with smakwater; Venetoclax maybe just a “partner”. If you could work with a rheumatologist to manage the leg pain.

Initially, my leg pain mimics plantar fasciitis and podiatrist recommended HOKA walking shoes which helped a lot too.

Venetoclax brought my ALC from 11.4 to 2.97 within 3 weeks, and achieved MRDu within half a year. It is a very powerful addition to my Ibrutinib. Hope you could find a way to accommodate this medication Wiggynugget 🙏🏻🙏🏻🙏🏻