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.
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.
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.
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.
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?
Hi Tiger, I cannot stress enough that you must see an MPN specialist. I am a patient of Dr. Camoriano at Mayo Phoenix, and I love him. But, there are many others around the country who are equally as informed. I have been on interferon for 11 years. If you do some internet research, you will find many resources. Best of luck!
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!
Do any of you who have been diagnosed with PV experience flushing of your skin? Specifically face, neck and chest areas. Sometimes spreading down the arms? Like this...
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.
Thank you for the information.I am on hydroxyurea and found as they upped the dose to 1000 I have sores in my mouth and using baking soda to cure them.I was told they may put me on a new drug at 35000 dollars a year .But I read the side effects and sounds alittle bad.Was wondering if Some people just have blood drops and do fine?
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.
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.
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?
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.
After reading @chadknudson post in November I decided to watch carbs cut out most potatoes pasta and bread also watched my sugar intake. In December my Hemocrit was at 45.4 I felt it was good enough to not do a Phlobotamy they thought differently. At the end of my appointment they raised my hemocrit goal to 47 so no Phlobotamy Dec or Jan Feb my hemocrit was at 46.7. March they will probably be taking blood. Yes I feel better changed jobs from shift work to straight day shift. Lots of good info on this site definitely helps make living with pv easier.
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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.
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.
Same with me
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?
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!
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1 ReactionHi 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.
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.
-
Like -
Helpful -
Hug
1 ReactionHi @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?
-
Like -
Helpful -
Hug
1 ReactionI'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!
After reading @chadknudson post in November I decided to watch carbs cut out most potatoes pasta and bread also watched my sugar intake. In December my Hemocrit was at 45.4 I felt it was good enough to not do a Phlobotamy they thought differently. At the end of my appointment they raised my hemocrit goal to 47 so no Phlobotamy Dec or Jan Feb my hemocrit was at 46.7. March they will probably be taking blood. Yes I feel better changed jobs from shift work to straight day shift. Lots of good info on this site definitely helps make living with pv easier.