Severe Joint, Muscle and Bone Pain After Last ... - CLL Support

CLL Support

23,250 members39,937 posts

Severe Joint, Muscle and Bone Pain After Last Infusion of Obinutuzumab/Gazyva

Snorkeler2 profile image
8 Replies

I have SLL and started treatment on veneteclax and obinutuzumab last fall. I had a concerning " twitching" reaction after the 7th infusion of obinutuzumab but decided to not be a quitter and take the last infusion. I really wish I could go back and change that decision. A few days ago I developed joint, muscle and bone pain so severe that I could not put any weight on my ankles, could not close my hands and could not get around without assistance. So overnight I went from walking two miles, doing yard work, etc. to almost completely debilitated. After being told by the triage nurse at the oncologist office to take tylenol (ugh) they finally gave me 20 mg of prednisone which allows me to get around, albeit still with considerable discomfort. I definitely don't want to take the steroids but I have no choice right now. I can deal with whatever I have to but I have to admit I am quite worried (probably an understatement) as to whether treatment somehow triggered an arthralgia or similar ailment that is not temporary. I have an appointment to see the oncologist in ten days. In the meantime, all his PA would say is that they have never had a patient with such a reaction to obinutuzumab or veneteclax. Has anyone heard of or experienced such a reaction after treatment with veneteclax or obinutuzumab? If so, did it go away eventually? I am generally very stoic with a high tolerance for pain but this has me rattled. So I would greatly appreciate any information or advice you can offer.

Thanks

Written by
Snorkeler2 profile image
Snorkeler2
To view profiles and participate in discussions please or .
Read more about...
8 Replies
LeoPa profile image
LeoPa

I'm very stoic too but I have next to no pain tolerance 😔. Sorry about your ordeal, may you get better soon.

Snorkeler2 profile image
Snorkeler2 in reply toLeoPa

Thank you.

Psmithuk profile image
Psmithuk

This sounds very painful, Snorkeler. I don’t have any advice, but hope you get this resolved very quickly. Chrisx

Maloncll profile image
Maloncll

Same symptoms. (extreme incapacitating back, knee pain ) to my wife after 3 month on imbruvica. Have been now 23 days off it and still bedridden. Starting on ant inflammatory pills last night and will start ivu today. Will keep you posted. The remedy has been much worst than CLL

Snorkeler2 profile image
Snorkeler2 in reply toMaloncll

I am sorry to hear that. I hope it resolves soon for both of us. While I am grateful for the treatment, the lesson for me is to always follow my life gut instinct from now on. My body was telling me after the seventh infusion of obinutuzumab that it had had enough. And I should have stopped then. But I was afraid to be seen as not compliant with the treatment protocol by the oncologist and by the insurance company in the event I needed subsequent treatment. I won’t do that again.

Maloncll profile image
Maloncll in reply toSnorkeler2

Agreed!

JanEyre profile image
JanEyre

Hi Snorkeler2

I have been on Predisolone for many years to treat Polymyalgia Rhumatica.

I also have cll.

I am on 5 mg a day. My cll is very stable but do not know if the Predisolone has anything to do with that. I have had no problems with the Predisolone.

I started on 40 mg a day and have slowly cut down to 5 mg.

Wishing you well

Jan

flipperj profile image
flipperj

I had a similar reaction to my last Rituximab infusion. Like you, something was not quite right after the second to last one and I debated calling it quits before completing the series. Then I figured just one more for the same reasons. At 3 months out I’m doing better.

Not what you're looking for?

You may also like...

bone joint and muscle pain

I’ve been reading the posts in another series and wanted to break this out. I’ve had a lot of...
skipro profile image

O+V treatment in Canada after Calquence

I'm still not sure of the whole protocol with the Obinutuzumab +Venetoclax treatment. My...

New Clinical Trail EA9161 with great results!

Hello folks. I have been on the site for a while and I have placed a couple of post but more an...
Riven8 profile image

High Alkaline Phosphatase and knee/bone pain side effects with Venetoclax/Obinituzumab

Hi folks My question is about side effects with Venetoclax and Obinituzumab. I wonder if anyone...
DinosaurDad profile image

Update #2 to “ Treatment Begins”

Wow, Saturday 4/20 Day 2 of infusion. Of Obinutuzumab started with labs 5:15 am. Imbrutinib places...
Coolerjoe profile image

Moderation team

See all
AussieNeil profile image
AussieNeilAdministrator
CLLerinOz profile image
CLLerinOzAdministrator
Newdawn profile image
NewdawnAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.