Jakafi

[USSpurdy]

Diagnosed with myelofibrosis on 10/17. Began jakafi 3 weeks ago. Platelets went down to 80 and doctor told me to stop jakafi. Did that last night and experienced terrible stomach intestinal problems this morning. Has anyone out there had same experience?

[ccsial]

I have read that you should not stop Jakafi cold turkey. Take reduced doses to wind it down.

[USSpurdy in reply to ccsial]

Ccsuak, your right! However, my platelets were so low (80) that my doc said to stop everything Thanks for your reply.

[francesb]

My haematologist stopped Jakafi cold turkey and I had horrible side effects, Professor H said this was wrong and put me back on it with instructions to reduce it gradually to stop. Best wishes.

[Anag]

Like the others said, it not good to stop cold turkey with any of our meds. 80 is not that low for it to be really dangerous. I know a 20yr old who was down to 5! My mother-in-law was down to 45 for a year and the doctor didn’t tell her to stop the daily 160mg of Ginkgo! She was Bruising when bumping into something. Important is to get off the blood thinners immediately. Have a good Sunday. Anag

[Fika500]

I know that Ruxolitinib should not be stopped suddenly but gradually reduced. I also know of people with platelets at around 40 who have stayed on it but they had relatively low platelet levels before commencing Ruxolitinib -you need an MPN specialist who knows you as an individual. It seems that care of a patient with an MPN requires some fine judgement and thorough knowledge of the patient’s case and full blood count before commencing treatment and close monitoring in the initial phase of treatment. It could be the correct judgement to stop in your case if your platelets went down rapidly -it may also depend on their level before you commenced. I wish you well.

[Hidden]

I had a different but unpleasant reaction. Dosage was halved to try and stop continuous drop in red blood count. Within a week a common cold put me hospital for two nights because of uncontrollable high temperature. Night sweats came back with vengeance. Took 6 weeks and a lot of antibiotics to feel better. It was a weekend and I didn't see my own consultant but luckily it was another MPN expert- he suggested it was "sudden withdrawal syndrome". When I came home I found mention of this on internet but no specific symptoms so maybe it affects us all differently.

I really hope you feel better soon, but probably best to speak to your haematologist as soon as possible.

[Sheryljean]

Hi

I have been taking Jakafi for the last 9 months, and there has never been talk about stopping it, even when my numbers have dropped. Interesting that the doctors do that. But I would think that withdrawing from a medicine like Jakafi or Hydrea as well, there would be issues. Maybe the doctors could offer something to help you. Will, you have to go back on again if numbers change??

Good luck..warm thoughts..

Sheryl