Is there withdrawal from stopping ibrutinib?

[Imbub]

Dr wanted me off ibrutinib for a couple months before possibly starting alacabrutinib. Having terrible headaches, nausea and achy legs etc. since stopping. Is this normal? How long will it last?

[shazie]

We had many discussions about withdrawal reactions from Imbruvica in the past. Ask your doctor if Prednisone(steroid) could possibly help you with the nasty reactions. If yes, I suggest start with low dosage and you can take it twice a day. Make sure you don’t take it later in the evening because you won’t be able to sleep. Majority of hematologists don’t have an answer for the withdrawal reactions because not too many patients report those reactions.

[Imbub in reply to shazie]

Thank you for the suggestion.

[Jm954 Administrator]

I think you need to ask your doctor why he wants you to stop the Ibrutinib for a couple of months before you start the Acalabrutinib.

I'm not aware of any good reason and could allow your CLL to flare up. That could give you quite bad symptoms if you've not been on Ibrutinib long and I think you've only been taking it for 7 months or so.

I also see from a previous post that you're taking 540mg? That is an unusual dose for CLL, usually reserved for Waldenstrom disease and may have contributed to the side effects that you've suffered.

Let us know

Jackie

[Imbub in reply to Jm954]

I have been on ibrutinib for 2 yrs. Started out on 540mg then down to 360and have been on 180mg for about 1 1/2 yrs. My specialist wants to monitor my numbers for the next month. She is concerned about the bruising and bleeding. I'm hoping these withdrawal symptoms are temporary.

[Doremefasol in reply to Imbub]

Change your doctor,Something is wrong here. 2 months is much to long.

[Imbub in reply to Doremefasol]

My dr is a renowned cll specialist who has seen me through this journey, has access to all my monthly labs, ivig challenges, numerous infections etc. I trust her expertise. My question was just to see if anyone else had these withdrawal symptoms.

[Doremefasol in reply to Imbub]

I had .My disease flared up after 10 days without Ibrutinib.I was back to square one.I had a pause because of neutropenia .After this ,my renowned oncologist said ,never again she will take me off Ibrutinib, until she is sure ,that I am doing well on another medication if she needs to change me to something else.During those 10 days ,I felt progressively more tired ,but that was it.

[duffymcgrif in reply to Doremefasol]

I've been on Imbruvica for 3 years and I am experiencing extreme edema in my legs and arms. Legs hurt so bad at night I can't sleep. My numbers are good, but this awful weight gain from fluids is awful. Dr. has me off Imbruvica for 2 weeks, but I don't want to go back on it again. I've heard that Venclexta is a good replacement. Does anyone know about it?

[Jm954 Administrator in reply to Imbub]

Honestly, I’m not sure why wait? What for? I’d want to be back on Ibrutinib or Acalabrutinib as soon as possible unless there was a very good reason your withdrawal symptom may get much worse and will go away again when you restart

Jackie

[Doremefasol in reply to Jm954]

I think that the dosage of Ibrutinib varies with patient weight.I was under the impression that if one gets lower than a dose proportional to one weight , mutations could develop.

[Jm954 Administrator in reply to Doremefasol]

No, with Ibrutinib, nor as far as I know for any targeted treatment, the dose is not weight dependent.

It IS dose dependent with chemotherapy however, when your surface area is calculated to guide the dose. The dose is usually capped at 2 sq m because of toxicity but that means that people who are very obese get less than the therapeutic dose which isn’t good.

With any treatment, if the dose is ineffective then it leaves the door open to proliferation and the possibility of mutations, including those that cause resistance, to develop.

Jackie

[Doremefasol in reply to Jm954]

Thanks, you have clarified this for me.

[Zia2]

I switched from Ibrutinib to Acalabrutinib and the only reason CLL doc had me wait two weeks and no longer in between them was to see if the diarrhea cleared up.