Ruxolitnib side effects

Thank you so much for your reply Jem. Are you on folic acid tablets? I was on them for 3 months. No sure if I should be on them all the time. Been told I'm borderline anaemic but haemoglobin levels are ok. Asked to reduce ruxolitnib dosage and was told no. I feel worse just now. Going to speak to cancer nurse next week. I was the same with hydroxyurea. Side effects were awful. I'm so sorry to see that you have been diagnosed with another illness. The polycythemia is more than enough to deal with. Take care and thank you for your reply xx

I was on folic acid tablets for a month and that seems to have worked. Ruxolitinib I have been taking on and off for the past year as it gets paused when my blood counts are low and needed a couple of pints of blood then restarted a few months later. Just now after starting again I am on 5mg twice a day but previously it was 10mg twice daily so for now the lower dose is keeping me kind of stable but for how long I don’t know. With now having AFib I will have to ask them about how this and PV get along together because as far as I can gather both have the same blood clotting and stroke danger so I am hoping for the best

Good to know you're stopping and starting the meds and that's making a difference. I'm going to ask again to cut down for a few months and hopefully I'll improve. My platelet count was too high but has come down now. Have they said anything about your platelet count? I had venesections for 9 years, every 3 months and that managed the illness very well but unfortunately had to go on meds. Hope this message finds you well. Take care x

This all started after I had a TIA in October 2023 and then blood tests I was diagnosed with PV and the Jak2 mutation a few weeks later in November I had 3 venesections and was put onto Hydrocarbamide in the December but it got stopped because I couldn’t tolerate it and my blood counts were too low. Was started on Ruxolitinib 10mg twice daily in May 2024 as my platelets were starting to rise, it was stopped in August because they were coming down again and needed a blood transfusion. Restarted them again in November last year but this time on a lower dose of 5mg twice daily as they couldn’t understand why my counts were fluctuating up and down. Ruxolitinib was stopped again in February this year, again counts were down and needed folic acid. Restarted in March as platelets were rising. I am due a blood test next week so will wait and see how that goes, they are scratching their heads with me as the doctor I see hasn’t had anyone fluctuate as much as I have and is going to ask other doctors if they have had the same experience with any of their patients before. Do ask about having a break but then it will depend on your platelet count but I’m no expert as It is all numbers for things I have never heard of before and just taking the meds I am prescribed as I really don’t understand it all yet.

Just wanted to ask anyone that looks at this thread if they have had their blood counts go up and down over a short period being on and off meds all the time. I thought meds would make your counts stable and within range, is this the way it works?

Take care and I am always here to listen if you need an ear x