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Experiences with
Hydroxycarbamide
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3rd dose of Aztrazenica Vaccine
I’m getting mine but still hesistant because I’m diagnosed with ET and PV .im taking
hydroxycarbamide
and aspirin.
I’m getting mine but still hesistant because I’m diagnosed with ET and PV .im taking
hydroxycarbamide
and aspirin.
Marimar05
in
MPN Voice
3 years ago
Flu
Anyone had the flu shot on
hydroxycarbamide
not sure if to have it
Anyone had the flu shot on
hydroxycarbamide
not sure if to have it
ChillyAsh34
in
MPN Voice
3 years ago
ET questions for my 16 year old daughter
Hello, I’m so relieved to find this support site! My daughter was diagnosed with ET , Jak2+ Last September at age 15. Her platelet range is the 800,000’s and have gone as high as 1.25 million. She is on 81mg aspirin daily and one Dr. initially wanted to put her on hydroxyurea and we declined and
Hello, I’m so relieved to find this support site! My daughter was diagnosed with ET , Jak2+ Last September at age 15. Her platelet range is the 800,000’s and have gone as high as 1.25 million. She is on 81mg aspirin daily and one Dr. initially wanted to put her on hydroxyurea and we declined and
Piperpeeps
in
MPN Voice
3 years ago
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Given up asking, nobody gives a fig
He did up the
hydroxycarbamide
from 3.5 a week to five a week. Yet seven months ago stopped
hydroxycarbamide
altogether, hence the million count platelets and the life threatening massive bleeds. Really think he's just experimenting on my wife with very little knowledge.
He did up the
hydroxycarbamide
from 3.5 a week to five a week. Yet seven months ago stopped
hydroxycarbamide
altogether, hence the million count platelets and the life threatening massive bleeds. Really think he's just experimenting on my wife with very little knowledge.
jointpain
in
MPN Voice
3 years ago
How do you afford Jakefi chemo? My insurance only pays for half of it.
I have essential thrombocythemia and was wondering if anybody is on Jakefi for treatment? My Hematologist wants to put me on this instead of hydroxyurea. My insurance only pays for half the cost of the drug. How do you afford it?
I have essential thrombocythemia and was wondering if anybody is on Jakefi for treatment? My Hematologist wants to put me on this instead of hydroxyurea. My insurance only pays for half the cost of the drug. How do you afford it?
Meeileem
in
MPN Voice
3 years ago
Mithridate Trial
This trial is Ruxolitnib versus
hydroxycarbamide
or interferon as first line therapy in high risk PV. I am 69 female diagnosed ET 2 years ago but diagnosis changed to PV 1 year ago. My worse symptom was pruritus which I had been plagued with since 2015.
This trial is Ruxolitnib versus
hydroxycarbamide
or interferon as first line therapy in high risk PV. I am 69 female diagnosed ET 2 years ago but diagnosis changed to PV 1 year ago. My worse symptom was pruritus which I had been plagued with since 2015.
JP1952
in
MPN Voice
3 years ago
At last
Attended my appointment today and have started on
Hydroxycarbamide
500mg to take 1 per day for 4 wks then go back to see if they need to up dosage or lower dosage , my platelet level sitting at 600 .
Attended my appointment today and have started on
Hydroxycarbamide
500mg to take 1 per day for 4 wks then go back to see if they need to up dosage or lower dosage , my platelet level sitting at 600 .
indy22
in
MPN Voice
3 years ago
Taking Plavix (generic clopidogrel) for PV
I have tried Hydroxyurea and Anagrelide but both of them were intolerable for me. I was getting ready to go on Jakafi (very expensive as others have pointed out). My HCT seems to be under control with an occasional phlebotomy but platelets are still very, very high. At my last Hematology appointment
I have tried Hydroxyurea and Anagrelide but both of them were intolerable for me. I was getting ready to go on Jakafi (very expensive as others have pointed out). My HCT seems to be under control with an occasional phlebotomy but platelets are still very, very high. At my last Hematology appointment
Bluetoday1
in
MPN Voice
3 years ago
Do PV patients need a fourth Covid vaccine?
I have PV and am on hydroxyurea. I'm very confused - and not getting clear guidance from my hematologist. Should PV patients go for a fourth shot? If so, should that be a fourth primary vaccine or a booster shot? What does it mean that my bloodwork showed negative for antibodies for immune response
I have PV and am on hydroxyurea. I'm very confused - and not getting clear guidance from my hematologist. Should PV patients go for a fourth shot? If so, should that be a fourth primary vaccine or a booster shot? What does it mean that my bloodwork showed negative for antibodies for immune response
souplover
in
MPN Voice
3 years ago
mds/mpn-rs-t
Does anyone out there have this specific diagnosis. I was diagnosed with it in 2018 and was told it was rare. I am on hydroxyurea and aspirin and that is controlling my platelets but not new symptoms I have developed.
Does anyone out there have this specific diagnosis. I was diagnosed with it in 2018 and was told it was rare. I am on hydroxyurea and aspirin and that is controlling my platelets but not new symptoms I have developed.
woodmonkey
in
MPN Voice
3 years ago
PV and abnormal low protein in blood
I have had PV for 4 years and take
Hydroxycarbamide
two 500mg daily. Recently posted about sensations in feet and legs and received replies which I was thankful for as some have reported similar symptoms.
I have had PV for 4 years and take
Hydroxycarbamide
two 500mg daily. Recently posted about sensations in feet and legs and received replies which I was thankful for as some have reported similar symptoms.
Edinburgh1953
in
MPN Voice
3 years ago
New to this site. We
72 year old make, diagnosed 3 years ago but have probably had Igor 6. Tinnitus has got much louder since I started in Hydroxyurea. Is this common?
72 year old make, diagnosed 3 years ago but have probably had Igor 6. Tinnitus has got much louder since I started in Hydroxyurea. Is this common?
Jim1949
in
MPN Voice
3 years ago
72 year old make
Is seems like my tinnitus is getting louder since I’ve been taking Hydroxyurea. I have to wear hearing aids and use a white noise machine to sleep. Anyone else have similar symptoms?
Is seems like my tinnitus is getting louder since I’ve been taking Hydroxyurea. I have to wear hearing aids and use a white noise machine to sleep. Anyone else have similar symptoms?
Jim1949
in
MPN Voice
3 years ago
3rd Covid Vaccine
Re-read the three page letter a little more frantically and finally found the word
hydroxycarbamide
so assumed I would be eligible. Big relief! The letter directs you to the NHS website to find a walk in vaccination centre - no appointments being offered.
Re-read the three page letter a little more frantically and finally found the word
hydroxycarbamide
so assumed I would be eligible. Big relief! The letter directs you to the NHS website to find a walk in vaccination centre - no appointments being offered.
MWxxxx
in
MPN Voice
3 years ago
Osteoporosis
Hi all, I have been on 500mg of hydroxyurea for 5 years and just been told that I’m at high risk for fractures because of a big change in my osteoporosis due to the Hydroxyurea. My doctor wants me to have injections of Prolia but the side effects are bad with that. I’m really worried about having the
Hi all, I have been on 500mg of hydroxyurea for 5 years and just been told that I’m at high risk for fractures because of a big change in my osteoporosis due to the Hydroxyurea. My doctor wants me to have injections of Prolia but the side effects are bad with that. I’m really worried about having the
Ann16
in
MPN Voice
3 years ago
Vaccine information
I have been offered a pneumonia vaccine I have ETJAK2 and am taking
hydroxycarbamide
and baby aspirin is it safe to have this I have had coved jab and flu jab and have been okay. Thanks in advance x
I have been offered a pneumonia vaccine I have ETJAK2 and am taking
hydroxycarbamide
and baby aspirin is it safe to have this I have had coved jab and flu jab and have been okay. Thanks in advance x
Tilly_Rose
in
MPN Voice
3 years ago
Response to Vaccine Query
You are not immunosuppressed by MPN/ET and
hydroxycarbamide
treatment.” I take it from this he/she has not read any of the letters or if so, does not agree? It is 180 days tomorrow since my second dose vaccine. I still have not heard anything. I am at a loss as where to go from here.
You are not immunosuppressed by MPN/ET and
hydroxycarbamide
treatment.” I take it from this he/she has not read any of the letters or if so, does not agree? It is 180 days tomorrow since my second dose vaccine. I still have not heard anything. I am at a loss as where to go from here.
mhos61
in
MPN Voice
3 years ago
Jabs
went through covid and thank goodness did my get it been double jabbed I am now getting inundated with phone calls from my GP surgrey to have flu jab pneumonia , shingles I have never had flu jab and I am not sure what to do now I don't want jabbing with every jab going I am on 75g aspirin and 500g
hydroxycarbamide
went through covid and thank goodness did my get it been double jabbed I am now getting inundated with phone calls from my GP surgrey to have flu jab pneumonia , shingles I have never had flu jab and I am not sure what to do now I don't want jabbing with every jab going I am on 75g aspirin and 500g
hydroxycarbamide
ChillyAsh34
in
MPN Voice
3 years ago
Help for weight gain?
I'm on a
hydroxycarbamide
regime for ET (now some 9 months since starting on this) For the first 2-3 months I was losing weight, but since then I have gained weight despite dieting. My platelet count is now normal, and the dose reduced to 500mg/day.
I'm on a
hydroxycarbamide
regime for ET (now some 9 months since starting on this) For the first 2-3 months I was losing weight, but since then I have gained weight despite dieting. My platelet count is now normal, and the dose reduced to 500mg/day.
Hidden
in
MPN Voice
3 years ago
Sudden change of management
Recently I was suddenly told, that because of my grand age, 62 I should now be treated with
Hydroxycarbamide
…simply because I am over 60. This has left me reeling. Anxiety through the roof. Weepy. Has anybody any advice, experience of this situation? Or suggestions on how I can approach this?
Recently I was suddenly told, that because of my grand age, 62 I should now be treated with
Hydroxycarbamide
…simply because I am over 60. This has left me reeling. Anxiety through the roof. Weepy. Has anybody any advice, experience of this situation? Or suggestions on how I can approach this?
Peachjoy
in
MPN Voice
3 years ago
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