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I was on Jakavi for 6 months and gained 5kg. Now it is difficult to lose it.
I have been diagnosed in the last 5 months with Primary Myelofibrosis. Prior to that i have had thrombocytopenia.
One of the problems with Jakavi is it makes you anaemic To the stage you could become transfusion dependant Try and finds clinical trial in your area
Issues such as chronic migraines, headaches, fatigue, itchy skin, worsened vision, occasional burning feeling in feet, intermittently getting hot, brain fog, body inflammation, etc.
Would peg interferon help these? Jakifi? What others?
Trying to learn 🤷🏻♀️.
Steve, thanks for your input. Always valuable.
I have PV and am JAK2 positive. I was diagnosed two years ago and have been taking 1500mg Hydrea/per day for almost a year. It has been keeping by blood work and symptoms under control. I am under 60 and have concerns about staying on Hydrea long term. I just had a telemedicine appointment with a doctor at Johns Hopkins who also expressed concern about the long term use of this medication, particularly for me since I am also BRAC2 positive. We discussed two other options such as Jakafi or… read more
I couldn't tolerate HU, and just switched to Pegasys after going to a Specialist out of state, and him finding me a better Oncologist locally. I had no big side effects from my first injection. A… read more
It did for me but then my counts got to law and I became anemic. I was on the lowest dose.
I know many people are taking this combo. Is anyone on this forum? If so, how are you doing on it? What dose of IFN & RUX are you taking? How long have you been doing it? What is your diagnosis? I'm ET JAK2+ & will be discussing this combo with my MPN specialist at my next appointment but wanted to get input from those that are currently on it. TYIA!
@A myMPNteam Member I removed the non-PV meds and put just the dose changes from the combo to clean it up. Once Pegasys was added, the next 18 months have been continual dose reductions to keep up… read more
Hi Carl
I was on Jakafi for close to 2 years. I got off because I felt it might be causing some brain damage and/or PML. Had a brain MRI but as there was no base to compare the MRI results to,… read more
My Hema said I could do it in their office. I’ve heard it can cause iron deficiency, anemia, loss of nutrients.
But it’s gotta be less toxic than an Rx, right? Seems all options have pros and cons? Some better and worse than others.
Thought this could be a good place to start for if and when I’m told baby aspirin isn’t enough.
New to all this mess and just started baby aspirin Jan. 31 but don’t even want to be on that.
🤷🏻♀️
Forgot to include the 20 year longevity study. The Anagrelide < HU study was separate from the phleb + aspirin < HU < interferon study.
I am on Medicare and Medicare Drug Plan, using AARP, I was just thinking about going to Jakafi and the price I am being quoted is around 2900.00 per month for 10Mg twice a day. Just curious what the real cost is. I can go to my Cancer Center and ask them to try for a better price, still won't know what the price should be.
I took Jakifi from April '22 until maybe November. I paid more like $4600 a month with insurance. Now I'm on Inrebic which is more like $6200 a month and I'm having to go look for assistance in order… read more
I just started taking it a few months ago, I used to take Hydroxyrea
I am fortunate to find this PV problem early. Has anyone been on Besremi?? Sure would like to know about this if so. It is very expensive and my co p is so very high.
