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.
I have swords in my mouth sometimes and red splatches or sores on my skin. I have read that some people can go with only phlebotomies for treatment. I am doing both and still my numbers will not stay down on 1000mp of hydrox with phlebotomy every 3 months.
I was diagnosed with PV in January 2021 when my doctor sent me to the ER after my blood test showed a high potassium level. This blood test did not include a CBC. When a CBC was done my HCT was 70.1. I had numerous phlebotomies the first month and placed on HYDROX (abbreviation) 500mg at first then 1000mg. I had phlebotomies first every month then placed on every 3 months. My numbers were between 48 to 51 before the phlebotomies. Recently I decided to go to a major cancer hospital in Houston, TX to get a second opinion. I went yesterday and they want me to join a study for a new medication-- rusfertide. I am apprehensive. I do not like taking medications, but this new doctor seems to frown on the usefulness of HYDROX.
I'd like to know if anyone is in this study or any other study. Evidently this study was stopped at one point due to skin cancer occurrence. I have a history of skin cancer and with the HYDROX.. I seem to have more, but my present doctor does not think that the HYDORX is causing it. This new drug they do recognize this as a side effect. The new doctor says that both drugs have that side effect, in fact he said all the drugs do. I'm confused and really don't know what to do.
Has anyone experienced this side effect with HYDROX or had any problems with the drug causing skin cancers?
Is anyone participating in this clinical trial?
Thanks so much for your input.
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?
Some times I feel better when my blood is thick and takes up to a hour to take 500 out but then sometimes I feel worse for a day or two.Funny as I feel better a hour after the procedure for a couple hrs.Are you taking any hydroxyurea.I am and wondering if I could just get blood drops.How often do you have your blood drops.
I was diagnosed with PV in January 2021 when my doctor sent me to the ER after my blood test showed a high potassium level. This blood test did not include a CBC. When a CBC was done my HCT was 70.1. I had numerous phlebotomies the first month and placed on HYDROX (abbreviation) 500mg at first then 1000mg. I had phlebotomies first every month then placed on every 3 months. My numbers were between 48 to 51 before the phlebotomies. Recently I decided to go to a major cancer hospital in Houston, TX to get a second opinion. I went yesterday and they want me to join a study for a new medication-- rusfertide. I am apprehensive. I do not like taking medications, but this new doctor seems to frown on the usefulness of HYDROX.
I'd like to know if anyone is in this study or any other study. Evidently this study was stopped at one point due to skin cancer occurrence. I have a history of skin cancer and with the HYDROX.. I seem to have more, but my present doctor does not think that the HYDORX is causing it. This new drug they do recognize this as a side effect. The new doctor says that both drugs have that side effect, in fact he said all the drugs do. I'm confused and really don't know what to do.
Has anyone experienced this side effect with HYDROX or had any problems with the drug causing skin cancers?
Is anyone participating in this clinical trial?
Thanks so much for your input.
Hi @pfscheyer, I can’t weigh in on your question about the new drug being offered in trial. However, as your doctor mentioned, Hydroxyurea, as with all immunosuppressant drugs, can weaken the immune system. That makes us much more susceptible to skin cancers. So it’s important to avoid unnecessary or prolonged exposure to sunlight and to wear protective clothing, sunglasses, and sunscreen.
I know taking these meds can be frightening. But they are allowing us to live a ‘normal’ life which would be greatly impacted without these drugs.
I found an article for you regarding the Rusfertide. It looks from the report in AshPublications.come that this new drug has been shown to be quite effective in reducing the amount of phlebotomies and lowers hematocrit. According to the article it’s well tolerated. Might be worth trying it.
Here’s the article for you. https://ashpublications.org/blood/article/138/Supplement%201/390/478239/Rusfertide-PTG-300-Induction-Therapy-Rapidly
Your followup information could be really helpful to so many members who also have PV. Let us know what you decide, ok?
I was diagnosed with PV in January 2021 when my doctor sent me to the ER after my blood test showed a high potassium level. This blood test did not include a CBC. When a CBC was done my HCT was 70.1. I had numerous phlebotomies the first month and placed on HYDROX (abbreviation) 500mg at first then 1000mg. I had phlebotomies first every month then placed on every 3 months. My numbers were between 48 to 51 before the phlebotomies. Recently I decided to go to a major cancer hospital in Houston, TX to get a second opinion. I went yesterday and they want me to join a study for a new medication-- rusfertide. I am apprehensive. I do not like taking medications, but this new doctor seems to frown on the usefulness of HYDROX.
I'd like to know if anyone is in this study or any other study. Evidently this study was stopped at one point due to skin cancer occurrence. I have a history of skin cancer and with the HYDROX.. I seem to have more, but my present doctor does not think that the HYDORX is causing it. This new drug they do recognize this as a side effect. The new doctor says that both drugs have that side effect, in fact he said all the drugs do. I'm confused and really don't know what to do.
Has anyone experienced this side effect with HYDROX or had any problems with the drug causing skin cancers?
Is anyone participating in this clinical trial?
Thanks so much for your input.
My husband recently diagnosed too. His symptom was big toe pain. Have just done phlebotomy so far. We’re still processing what this all means. I was able to get him into an MPN specialist in March. I really like these resource websites (including this mayo site) - https://www.patientpower.info/myeloproliferative-neoplasms https://www.pvreporter.com
Strangely this is how my PV started with big toe ache
I am now in my third year roughly two phlebotomy’s a year and on hydro tabs a few aches at night but controllable and I am managing this condition so far
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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.
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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.
I have swords in my mouth sometimes and red splatches or sores on my skin. I have read that some people can go with only phlebotomies for treatment. I am doing both and still my numbers will not stay down on 1000mp of hydrox with phlebotomy every 3 months.
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?
Some times I feel better when my blood is thick and takes up to a hour to take 500 out but then sometimes I feel worse for a day or two.Funny as I feel better a hour after the procedure for a couple hrs.Are you taking any hydroxyurea.I am and wondering if I could just get blood drops.How often do you have your blood drops.
Hi @pfscheyer, I can’t weigh in on your question about the new drug being offered in trial. However, as your doctor mentioned, Hydroxyurea, as with all immunosuppressant drugs, can weaken the immune system. That makes us much more susceptible to skin cancers. So it’s important to avoid unnecessary or prolonged exposure to sunlight and to wear protective clothing, sunglasses, and sunscreen.
I know taking these meds can be frightening. But they are allowing us to live a ‘normal’ life which would be greatly impacted without these drugs.
I found an article for you regarding the Rusfertide. It looks from the report in AshPublications.come that this new drug has been shown to be quite effective in reducing the amount of phlebotomies and lowers hematocrit. According to the article it’s well tolerated. Might be worth trying it.
Here’s the article for you.
https://ashpublications.org/blood/article/138/Supplement%201/390/478239/Rusfertide-PTG-300-Induction-Therapy-Rapidly
Your followup information could be really helpful to so many members who also have PV. Let us know what you decide, ok?
-
Like -
Helpful -
Hug
4 ReactionsI was diagnosed with PV in January 2021 when my doctor sent me to the ER after my blood test showed a high potassium level. This blood test did not include a CBC. When a CBC was done my HCT was 70.1. I had numerous phlebotomies the first month and placed on HYDROX (abbreviation) 500mg at first then 1000mg. I had phlebotomies first every month then placed on every 3 months. My numbers were between 48 to 51 before the phlebotomies. Recently I decided to go to a major cancer hospital in Houston, TX to get a second opinion. I went yesterday and they want me to join a study for a new medication-- rusfertide. I am apprehensive. I do not like taking medications, but this new doctor seems to frown on the usefulness of HYDROX.
I'd like to know if anyone is in this study or any other study. Evidently this study was stopped at one point due to skin cancer occurrence. I have a history of skin cancer and with the HYDROX.. I seem to have more, but my present doctor does not think that the HYDORX is causing it. This new drug they do recognize this as a side effect. The new doctor says that both drugs have that side effect, in fact he said all the drugs do. I'm confused and really don't know what to do.
Has anyone experienced this side effect with HYDROX or had any problems with the drug causing skin cancers?
Is anyone participating in this clinical trial?
Thanks so much for your input.
Strangely this is how my PV started with big toe ache
I am now in my third year roughly two phlebotomy’s a year and on hydro tabs a few aches at night but controllable and I am managing this condition so far
-
Like -
Helpful -
Hug
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