Pause Ruxolitinib

[Arami]

Hello Friends, I hope you are all well. I need your advise for the following situation: I am having a graft surgery on my leg in a few days that requires total anesthesia. The anesthesiologist called me the other day to tell me to quit taking Rux 3 days before the surgery (he said he did some research and it should be ok). I am not comfortable with this, and there is no chance to get in touch with my hemathologist before the surgery. So I am would like to ask if any of you had been in a similar situation, having to stop Rux for a few days, and if so, were there any side effects?. Thank you in advance and all best wishes!

[ainslie]

I think it is essential to discuss this with your haematologist before stopping, it is possible to get a rebound from stopping suddenly. It may partly depend on which MPN you have and dosage.

[EPguy]

Rux discontinuation syndrome (RDS) is well known. This is one report for MF pts:

"platelet count <100 × 109/l (HR 2.98, 95%CI 1.29–6.90) and spleen ≥10 cm BCM (HR 2.03, 95%CI 1.01–4.17) at RUX stop were significantly associated with higher probability of RDS"

but "the occurrence of RDS did not significantly influence overall survival."

and "(RDS was) apparently without relation with RUX dose, and seems to improve after RUX reintroduction"

That last item may be relevant for you, you should discuss how quickly you can restart Rux.

nature.com/articles/s41408-...

This report is largely in context of pts who had adverse events or lack of effect from Rux, so for those for whom it's working fine might be different.

[Arami in reply to EPguy]

Thank you for your response, and the article. The plan is to stop taking Rux on Sunday (2 pills), Monday (2 pills) and Tuesday morning (1 pill). Restart Tuesday night after surgery. Don´t feel good about it at all.....

[EPguy in reply to Arami]

Did the Dr give you a specific reason to stop?

This a short discussion of the subject that includes Dr Mesa.

onclive.com/view/ruxolitini...

The context of stopping is for a pt that cannot take the pills because of the surgery or its cause, as opposed to should not because of risk. So your Dr says "should not". Did you ask why?

A a Rux pt I share an interest.

[Arami in reply to EPguy]

The anesthesiologist who had a list of all the medication that I am taking decided that I have to only stop Rux for a few days before surgery. He said that he researched and it should be ok, but without giving other reason. Thanks for the link you included with your response! I am still struggling with what to do.

[Gipsy123]

Dear Arami

I was on rux for 6/7 years, and when I accidentally missed a dose, I felt awful. Hard to describe, but not an experience I’d want to repeat. In your position, especially as you can’t contact your haematologist, I’d continue with my normal dose. I had various surgeries ( skin cancer excisions, etc) while I was taking rux and it was never suggested that I stop the rux.

[Amethist]

how about trying to talk with a pharmacist?

[Pogm]

Hi, I had a hip replacement in July and my surgeon said to stop Rux. My MPN specialist said" absolutely not". You can experience a " cytoline storm " if you stop the drug abruptly. Please consult with your hematocrit or specialist before you u ergo surgery. Good luck with the surgery!

[Pogm in reply to Pogm]

Sorry about spelling mistakes. .Meant to say "cytokine storm and hematologist.

[DJK12]

I had a cytokine storm from rux dosage being decreased too abruptly to try and get on top of my anaemia. It should have been done much more gently. I think it's essential you somehow contact your haematologist and alert your anaesthetist to the evidence others here have signposted you to. Also general oncologists have suggested rux was witheld while I have had serious infections but the haematologists quickly reversed this.

[Cazbolac]

When I was on Rux I was always told never to stop it. If anything it would be reduced but never just stopped. Please seek advice from your haematologist. Your other surgeon is not an expert on Rux. All the best.

[Meatloaf9]

Hi, I think it is great that the anesthesiologist took the time to look up something that he knew little enough about that he had to look it up (Probably not unusual with these MPN drugs). Personally I would not solely go by his recommendations without talking to my MPN specialist. This is just my opinion, not advice, I am 75, PV and on HU. I think I would probably reschedule the surgery until I could get advice from my MPN specialist unless it is that urgent that you cannot wait. Best to you on the surgery and anesthesia and in getting advice from your hematologist. Best always.

[dogsandhorses]

Well, it wasn't due to surgery, but I ran out of Rux/Jakafi because the Dr. forgot to tell the pharmacy that he doubled my dose, and I had to quit taking it for 6 days until they could ship some more to me. I filled in with my old Hydrea, and got really sick for 6 weeks. Don't know if was going off Rux abruptly, or taking the Hydrea.

[Starsailor]

Hi Arami,

I have had two skin grafts from my leg to my head in the last year. I continued taking my medication throughout and my Haematologist took part in all of the multi disciplinary team meetings. The only medication I stopped a few days before surgery was aspirin.

Good luck with the operation.

[waddles22]

My husband has had a few ops recently and his haematologist told him to carry on with his normal dose. The only meds he stopped for a day was apixapan. I would try and speak to your Haematologist before your op. They are the people who know you and your circumstances