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

[Snorkeler2]

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

[LeoPa]

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

[Snorkeler2 in reply to LeoPa]

Thank you.

[Psmithuk]

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

[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 in reply to Maloncll]

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 in reply to Snorkeler2]

Agreed!

[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]

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.