brilsmla Welcome you and your friend to PV party! We can find answers together. (Never heard of PV or Myeloproliferative neoplasms, or MPNs) until I was diagnosed with it!
A friend has been diagnosed with polycythaemia vera very recently and is in a bit of a shock about it. They want to know why they're feeling dizzy when they look up?
They aren't starting treatment for a few weeks.
I want to be as helpful and knowledgeable as possible to support them. Any advice is appreciated!
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
Hello, I have had PV with JAK2 for about 5 years. I work and live a very active life. It took about 2 months to get a good system of phlebotomies and started Hydrea to get numbers controled. I now am on Jakafi after 3 years and phlebotomies 2-4 a year. Overall short term its not bad. I suggest to cut back work and enjoy life without stress and working too hard. It has been a managable disease without too much change for me. I get tired a little if I over do it but otherwise no worries. Good luck, stay positive all of you
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
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.
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.
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.
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?
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.
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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brilsmla Welcome you and your friend to PV party! We can find answers together. (Never heard of PV or Myeloproliferative neoplasms, or MPNs) until I was diagnosed with it!
-
Like -
Helpful -
Hug
2 ReactionsMy 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
-
Like -
Helpful -
Hug
1 ReactionHello, I have had PV with JAK2 for about 5 years. I work and live a very active life. It took about 2 months to get a good system of phlebotomies and started Hydrea to get numbers controled. I now am on Jakafi after 3 years and phlebotomies 2-4 a year. Overall short term its not bad. I suggest to cut back work and enjoy life without stress and working too hard. It has been a managable disease without too much change for me. I get tired a little if I over do it but otherwise no worries. Good luck, stay positive all of you
-
Like -
Helpful -
Hug
3 ReactionsStrangely 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
1 ReactionI 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.
https://ashpublications.org/blood/article/138/Supplement%201/390/478239/Rusfertide-PTG-300-Induction-Therapy-RapidlyHere’s the article for you.
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 ReactionsSome 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.
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?
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.
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.