Polycythemia Vera: Just been diagnosed

I'm thinking about the response above of @loribmt, and wanted to pipe in that the interferon I'm taking for ET/PV does not seem to caution against sun exposure. I see it referred to as immunotherapy instead of immunosuppressant-- is that an explanation of the difference?

I have just started treatment recently, Besremi injections and several phlebotomies. The last phlebotomy was a bit dramatic, as the needle shot out of my arm mid draw. My platelets are very high, and the blood withdrawal is barely able to keep Hematocrit levels near normal; all these signs are frightening, but I am playing a waiting game now, hoping treatment will produce results before any clotting or stroke happens. I'd like to learn more about supplements (beyond aspirin) to prevent strokes, but for now I'm relying on Qi Gong exercises and breathing exercises to ease the psychological stress and very likely physical resistance in my veins/arteries.

Health to all of you!

Hi @treeore Besremi interferon isn’t classified as an immunosuppresant but it’s intended to work by reducing the amount of blood cells produced in the bone marrow. However, that’s not exclusive to red blood cells. White blood cells and platelets are all products of the blood manufacturing proccess. By potentially lowering your white blood count, that means there’s a hit to the immune system, making it less robust. So you still should take precautions in the sun by limiting exposure, using sunscreen and wearing protective clothing.

You sound like you have some wonderful coping skills for keeping the stress level in check. Let us know how the Besremi injections work for you.
Are you taking daily aspirin?

Hello albertedward, was wondering what your new drug was ? I recently started Jakafi and it also is expensive but i tolerate Jakafi better than Hydrea.

Hi there! I have flushing of the face and arms but it is splotchy. I have it every morning. I am suffering with the itchiness now too. Unfortunately I have not found anything to help with this. You are not alone with this symptom.

Thanks @mikepv. It is nice to know we have support with this site. I am continuing to ask lots of questions. I am hanging in there but it is nice to know I am not alone in this fight!

Has anyone had issues with low blood pressure following phlebotomies? My blood pressure has been bottoming .out. My blood tests are still high and withdrawing 500 ccs due to my numbers not improving. Went to my PCP a few days following phlebotomy and my BP was 84/55. It is scary because I am so drained and cannot do anything. By the time I feel better, my blood is high again and I feel tired and suffer from my Polycythemia symptoms. Anyone experiencing this?

Same with me

Recently diagnosed in November with pv/et, jak2+.
Originally on hydrox 1000 daily with phlebotomy x 3 (as needed for hematocrit over 42). Not many side effects from drug, but platelets got too low and had some bleeding problems. Just get very tired but I’m 82. Now on 500 hydrox 3 times a week and levels are fairly stable…have not needed phlebotomy in a month. Was getting weekly cbc, now every other week. Trying to be patient while I get stabilized. I see a hematologist/oncologist at the Cleveland Clinic. I find this forum very helpful. Thanks for the warning about sun exposure …planning Florida trip in May.

I have not started ruxolicinid yet as you have to get approved because the cost.I don't know much about it so for now on 1000 hydroxyurea and blood drops .But lately feeling somewhat better.Not going down to my knees as much and as long as I don't get excited I almost feel normal.Yes I do have some sores in my mouth but much better and on my back side.I guess we all just keep adjusting and hope for the best .Good luck to all of you.

This site is very helpful however you may also like MPN Interterferon Forum. This Facebook site has been a great support for me. No medical advice but thousands of others who also have PV sharing support.