Simple question,does anyone else have the set of 3 PV ,ET,and Jak2.I take 2x500 hydroxy Monday to Friday then 1 Saturday and Sunday,I’m also take 1 25 mg aspirin .I was diagnosed 5 months ago,I have no side effects and feel a bit of a fraud when reading all the blog comments of people with various problems.
Magpie48
I am the same age as you with same diagnosis 4 years ago and similar HU dosage. Other than afternoon fatigue I feel pretty good. We are both lucky to have avoided many of the issues others have reported. I did have a tough time with anemia a couple of years ago but that's been resolved. Stay well my friend
Your PV can be stable for 20 or 30 years, with limited side effects. I was diagnosed in 1987 and I had a Hematocryt level of 68% at the time. But I had an almost normal life (work, sports, social life) since then. I have known patients with a quality of life much lower, so you need a bit of luck. Learn to live with the disease and accept it. Do everything possible to avoid thrombosis (no smoking, avoid overweight...). Regular sports can help you to deal with some discomfort.
Wow, you have done very well for a long time. I am 74 with PV now, ET was my original diagnosis, it became PV after 3 years.
May I ask what treatments you have had over the years? Are you Jak2+?? I think I want whatever treatment you have had!
Best to you always
From the start I had phlebotomy, once a week to start with and I stabilised at once every 6 weeks. Combined with a cardio aspirine, and Allopurinol.
When I turned 60, I was told that the risk for thrombosis became more important, and so I switched to 2 X Hydrea capsule per day. But after a few years I did not support the Hydrea so well. So Hydrea was reduced to one per day, combined with a phlebotomy every other month. I live in Belgium, and Pegasys is not reimbursed for MPN. From what I hear in different forums, that is a miss. Not every patient supports it well, but I think quality of life could be better with Pegasys. When was your diagnose?
I also have a the JAK2v617f mutation, which causes PV with both erythrocytosis, thrombocytosis, and basophilia. It is worth noting that PV can include thrombocytosis, so technically it is not having both PV and ET. The JAK2 mutation can cause ET, PV, and MF. About 98% of people with PV have either JAK2v617f or JAK2 Exon 12. It is about 50% of people with Et and MF whop have one of the two known pathogenic JAK 2 variants. There are actually more than two JAK2 varanints. Over 50 variants have been identified.
Having an indolent presentation of PV does not make you a fraud. it makes you fortunate. It is worth noting that many of the consequences of the JAK2 mutation (e.g., systemic inflammation) can be subtle and not always clearly linked to the PV.
Wishing you all the best moving forward.
