Experiences with

Jakavi

Should I not take Jakavi before surgery?

I just had a call with my haematologist and MPN specialist in Dublin and she said she will probably have to move to me to Jakavi due to the interferon shortage. She said Jakavi should help with my thyroid issues anyway?

I have been on Jakavi for 3 years and my RBC count dropped, I have circulating blasts, but only 2% or so at present, and I got very weak and breathless with the anaemia. I feel much better since the transfusion, but am wondering how long this is likely to last.

I am trying to lose some of the weight I put on with Jakavi, with some success, so it could be low blood sugar. Anyone else experiencing this? Thanks. Lucieboo.

I am assuming she may start me on either Pegasys or JAkavi which are the only alternatives funded in New Zealand and only available if the patient cannot tolerate HU. My Hb currently is 118, Hct,Rbc 6.31 , Platelets 168, LDH 388. My main symptom is gross fatigue plus SOB on exertion.

Hi everybodyI learned today that my ET has progressed to MF. I had a bone marrow biopsy which seems to confirm it, although a spleen scan showed my spleen is completely normal. I'm on Pegasys 135ml at the moment but platelets are 729 (going up) and not well controlled. The consultant suggests moving

Two more queries here: I'm newly diagnosed with post-ET Myelofibrosis and I've just collected my first prescription of Jakavi which I haven't taken yet.I noticed that the tablets are 20mg, and I have to take 2 a day.

I started Jakavi in September 2023, and due to poor response, I was also put on Hydrea and Pegasys to slow disease progression. After my platelets dropped below 1000, I stopped the Pegasys.

I have had PV since two years. Rux started december '23. Good results with HB and HCT. HB is pretty low now 7.7 for a while. My weight has increased 10% wit the same diet. My saturation is, in rest 92, with effort I can raise it to 93/94. Long test last week revealed a very good lung condition (5,7

My dilemma is that I don't know the degree of effectiveness of the Imetelstat, and would almost certainly have to suffer my original bad symptoms when I stop using Jakavi.

At first just when I did injections now all the time Dr has taken me off Pegasys immediately put me back on Hu, only 500mg until Jakavi, is approved. Last time on Hu only platlet 1.99 million. Concerned that the kidneys and liver will need to recover. Has anyone else experienced this?

(On Jakavi since August 23) So took Pegasys for about 16 months After a couple of months on Pegasys I started to experience close vision problems which could not be corrected with glasses. I saw several opticians. Over the last year my eyes have been very puffy as well.

This Forum is amazing and I depend on it. I'm interested in others who may have had something similar with auto-immune issues on Besremi. Apologies for the saga. Diagnosed with PV August 2021, AB 22%, put on Hydroxy for a year, then Besremi for the past 20 months, gradually increased from 50 to 450

I recently met with my specialist. I've gone to a number of doctors and tend to dig pretty deeply into the data. But I do love this one, incredibly knowledgeable, and in conjunction with my own research and this incredible website and group, I feel like I have some control back. I strongly pushed to

So, with a diagnosis of ET Jak2 positive, my first treatment in 2018 was Hydroxyurea, which I took with many side effects until early this year when I could no longer tolerate it. My platelets never went below 495 on Hydrea. Lots of side effects, mostly gastrointestinal, and lost 30 lbs. that I didn't

So I was at the Hemo/onco last week. I kind of jokingly asked him, "So do you think I will live another 10 years?", and he said "Maybe". Now before you get mad at him, he did, of course, quantify that no one knows, and no one can predict the course of the disease exactly yada yada [i]BUT,[/i] he thinks

hi, I am a ET patiënt, but because my hematocrit and hemoglobin rises and I need phlebotomies, I will soon be diagnosed as a PV patiënt also. I am on Anagrelide at the moment but will have to switch medication very soon.I am intolerant to Hydrea. There are two possiblities: or Jakafi (rux) or Besremi

I was diagnosed late last year with low JAK2 (<2%) PV, with hct .54 and hgb around 170. This was due to routine test for cholesterol. Since then I've had several venesections and my quality of life due to tiredness and feeling washed out has been awful. I have no other constitutional symptoms. In desperation

I just had to change from Pegasys due to too many side effects, and was put on Jakafi. My question is does 15 mg. twice a day for a woman that is 110 lbs. seem like a lot? From what I read it seems so to me. My platelets had gone down on Pegasys from over a million to 567, but with bad side effects.

Hello all, As I continue on my Jakafi journey, I am relatively happy with my counts, as is my doctor. However, the dreaded weight gain continues. 13 pounds thus far and counting. If I could be assured (ha, ha as if) somehow that this would be it and the weight would stabilize, I might consider