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Polycythemia Vera: Just been diagnosed
Have been diagnosed with polycythemia Vera recently, Any feed back
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Have been diagnosed with polycythemia Vera recently, Any feed back
Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
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Hi! I just saw you mentioned a transplant? Which one? My husband had a liver transplant 7 years ago and is doing pretty well. He’s on different drugs which are immunosuppressive also, as I’m sure you are aware of. Hydroxyurea for PV high risk for skin cancer as are transplant meds.
Hi, @nypara66, I had a bone marrow transplant 4 years ago tomorrow! Initially I was probably taking the same immunosuppressant drugs as your husband. With organ transplants I know patients will be on those meds for life. With a BMT, eventually we can usually stop taking the meds at some point because our new immune system begins to recognize the proteins in our body and no longer rejects us! That’s the goal, but doesn’t always work out that way. There can be some lingering issues with graft vs host disease. However, even with a new immune system it will never be as robust as the factory installed version.😅 So sunscreen is a must!
Solid organ transplants do require lifelong immunosuppressants which act as an anti-rejection medication because the immune system will always see the organ as an invading entity. So yes, your husband will need that sunscreen and protective clothing. If he’s like me, we’re just grateful to be living and if wearing a mask and sunscreen keeps us healthy, that’s an easy trade. Every day is a gift!
Do you live in a high sun area? Right now, in northern Wisconsin, the smoke from those devastating fires in Canada is blotting out the sun and it’s really difficult to breathe when outside. The N-95 mask has really helped on my daily walks.
It sounds like you are working well with your doctor and healthy balance.
I take jakafi to keep my blood under control I never have to take blood transfusion so far in 7 years
It will take about 6 months or so to figure out some sort of routine. Once they get your numbers where they like them, platelets, hemoglobin and hematocrit, you will feel much better and not go in so often. I’m at six months in from diagnosis. Had 6 phlebotomies, once weekly, then every month and now it was 9 weeks. Hoping to get it to every 3-4 months. I take Hydroxyurea 3X a week which is a low dose. They will be playing with that dosage indefinitely until some sort of normalcy with your numbers. My hemoglobin stands at about 14 now? Was 22 in January. Hematocrit must be at 45 or under to be safe. Mine was 62 at the start. Over that it’s time for a phlebotomy. Platelets, my doctor says under 600 is acceptable although the lab standards say up to 450? So for the first time I’m steady at 470 for six weeks. I was 777 in January and have been yoyoing, so stressful! I do feel better and am hopeful it’s finally leveling out. Hang in there!
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3 ReactionsIt was tough at first I experienced the same thing when I first started my blood count was at 67 I felt sick as a dog my blood was very thick but we made it we're down to 40 on my blood count thank the Lord I was put on Jackifi because the other was not slowing my blood down and also I am on eliquis as a blood thinner 10 mg twice a day
I also am taking Jakafi. It helps immensely with PV side effects however I still need a phlebotomy every couple months. My hematocrit is kept at 42 or below.
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1 ReactionHow many milligrams do you take a day? I'm on 10 mg twice a day
5 mg I started at 10 mg but had to cut back.
Gotcha okay I'm glad it is working for you