Experiences with

Jakafi

Maybe that's why my starting dose of Jakafi is higher. Also, I don't know whether it was the Peg or Jakafi since I just started Jakafi today, but I certainly have excessive gas. Anyone else experience this?

There are two possiblities: or Jakafi (rux) or Besremi. I wonder what would be the best solution. The spleen is not enlarged. I also wonder if there is a counter argument if the doctor wants to give me Jakafi.

My hemo/onco told me today that he has been reading data about momelotinib, (brand ojjaara) and it has surpassed Jakafi in terms of results.

Had lots of side effects from that, so changed to Jakafi less than a month ago. Platelets are already down to 271!!! Fewer side effects, so I feel like I can continue on this treatment at last. I just wanted to share what seems to be a success story!🤞🙂

Does anyone have any info as to why/how Jakafi makes you gain weight and/or strategies for fighting it? I do exercise daily. Again, I know we all have way bigger issues here so please don't judge. 🙏

I don’t even want my md to raise my Jakafi dosage. I was in pain before my diagnosed, but now… no bueno. This is all new to me & I’m so scared 😢

What do others on Jakafi take with severe anxiety?

I have been in clinical remission for 18 months and take Jakafi 10mg 2x daily. I have an allele burden of 15 currently down from 60 at diagnosis. My blood draws have been within limits for 18 months with only a blip in the blood calcium.

Hi All - the brain is muddled and I can’t find what I’m looking for but remember seeing a discussion about taking Vit D3 while on Jakafi (rux) for my PV.

I am reasonable fit but could stand to lose a couple of stone and wonder if that may help but also wonder if anyone has succeeded in fighting for one of the more modern drugs (peg, jakafi etc) and how they went about it? I just feel so lost.

I have been taking Jakafi (15 mg) twice a day for the last 3 years for my polycythemia vera. I also take blood thinners for my thrombocytosis since I have had blood clots in my lungs twice in the last 2 years.

I will be 61 next week, with no hx of thrombosis, and on Jakafi after five years on peg/besremi. My numbers are well controlled now, but my cbc shows all the weird blasts, large cells, high LDH, etc. I suppose I don't have a question, but just wanted to vent.

My question is whether anyone here had no hct control with interferon but had better luck with rux/jakafi in that regard. Also has anyone here had allele burden reduction with rux? Thanks in advance.

I strongly pushed to discuss Jakafi, but it's still very early for me to do this, especially with a so far stable alele count around 15. Once on Besremi my platelets cratered back to a healthy level where they have remained.

Anyone else on Jakafi/ruxolitinib and have their head “racing” at bedtime? I guess sort of like you’ve had several cups of coffee and laid down to sleep.

Are there any other assistance programs for Jakafi out there! TIA! Kim

I have been concerned about being off of Besremi and my MPN specialist (who I value greatly) agreed I could re-start at 200 mcg and see how it goes, however, she also started the process to get approval for Jakafi.

I plan to stay on Besremi unless it makes sense to switch to Jakafi, which I hear is excellent at controlling itch. I just got word from my dermatologist that some people have felt relief with a combination of Zrtec or Allegra and Pepcid.

I now have the choice between Jakafi (Ruxolitinib) or one of the Interferon treatments. My instinct points to Jakafi particularly as it's supposed to influence JAK2. I'd be grateful to hear from anyone who has taken this step, i.e. from HU to .

Hi all fellows in MPN, I just met my doc and informed that Malaysia especially Kuala Lumpur hospitals out of stock for Jakafi and Pegasys. If you have a plan to see your doc in very near time, pls ensure to ask more for your buffer stock. Cheers