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Experiences with
Hydroxycarbamide
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My latest thoughts on detox
I've decided, in part thanks to all the kind concern here, that I will wait to discuss idea of a short break from
Hydroxycarbamide
until I go to Guy's Hospital appointment in May . Especially after reading Frans latest post . Support from you all is great . Thank you Carolyn
I've decided, in part thanks to all the kind concern here, that I will wait to discuss idea of a short break from
Hydroxycarbamide
until I go to Guy's Hospital appointment in May . Especially after reading Frans latest post . Support from you all is great . Thank you Carolyn
Mostew
in
MPN Voice
1 year ago
Anyone try Methylene Blue?
Hi everyone - I'm a 66 year old male, diagnosed with E.T. (Jak2) 2 years ago with platelets around 1.6 M. I was experiencing tennis ball sized Hematoma's and bruising without injury, as well as visual distortions and some facial numbing. Currently taking 12 - 500mg. Hydroxyurea a week to keep
Hi everyone - I'm a 66 year old male, diagnosed with E.T. (Jak2) 2 years ago with platelets around 1.6 M. I was experiencing tennis ball sized Hematoma's and bruising without injury, as well as visual distortions and some facial numbing. Currently taking 12 - 500mg. Hydroxyurea a week to keep
ET824
in
MPN Voice
1 year ago
Anyone have experience of taking Imiquimod when taking hydroxycarbamide?
I am currently being treated with
hydroxycarbamide
& low dose aspirin for JAK2 positive MPN (high platelets but treatment is currently keeping these within normal range).
I am currently being treated with
hydroxycarbamide
& low dose aspirin for JAK2 positive MPN (high platelets but treatment is currently keeping these within normal range).
Devilgirl
in
MPN Voice
1 year ago
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Any value seeing a gastroenterologist for ET belly bloat?
I have a hunch this has been caused by the
hydroxycarbamide
. I'm on a low dose of 500mg/day now and platelets are normal. The belly however refuses to budge. This is frustrating to say the least as I am still a very weight conscious person and have been all my life.
I have a hunch this has been caused by the
hydroxycarbamide
. I'm on a low dose of 500mg/day now and platelets are normal. The belly however refuses to budge. This is frustrating to say the least as I am still a very weight conscious person and have been all my life.
Hidden
in
MPN Voice
1 year ago
Et triple negative platlets gone up to 1560
Hi all, Just getting back on here about platlets increasing over 1500,My hematologist will want me on hydroxyurea as he said when I go over 1500 that is his way forward. The past 2 bloods I had done have come down from 1420 to 1402 to 1300 last time 6 weeks ago. I am just wondering if it has to be this
Hi all, Just getting back on here about platlets increasing over 1500,My hematologist will want me on hydroxyurea as he said when I go over 1500 that is his way forward. The past 2 bloods I had done have come down from 1420 to 1402 to 1300 last time 6 weeks ago. I am just wondering if it has to be this
Mike1974
in
MPN Voice
1 year ago
Detox plan changed
I was thinking of doing detox for a month and stopping
Hydroxycarbamide
whilst doing. Then having blood test. Decided to go down to meds Monday and Friday for a while to see what happens . If little change negatively , then do detox.
I was thinking of doing detox for a month and stopping
Hydroxycarbamide
whilst doing. Then having blood test. Decided to go down to meds Monday and Friday for a while to see what happens . If little change negatively , then do detox.
Mostew
in
MPN Voice
1 year ago
Polycythemia vera: 2024 update on diagnosis, risk-stratification, and management
https://onlinelibrary.wiley.com/doi/full/10.1002/ajh.27002 « Survival and Prognosis Median survival is ⁓15 years but exceeds 35 years for patients aged ≤40 years. Risk factors for survival include older age, leukocytosis, abnormal karyotype, and the presence of adverse mutations. Twenty-year risk
https://onlinelibrary.wiley.com/doi/full/10.1002/ajh.27002 « Survival and Prognosis Median survival is ⁓15 years but exceeds 35 years for patients aged ≤40 years. Risk factors for survival include older age, leukocytosis, abnormal karyotype, and the presence of adverse mutations. Twenty-year risk
Manouche
in
MPN Voice
1 year ago
Hydroxyurea to give
Since doc change my meds to Jakafi and Pegasys, I want to give my HU 1 box (100 caps) to anyone who need it.I can to send it to MPN fellow with this treatment who live in Indonesia, simple because cost of air cargo. Cheers
Since doc change my meds to Jakafi and Pegasys, I want to give my HU 1 box (100 caps) to anyone who need it.I can to send it to MPN fellow with this treatment who live in Indonesia, simple because cost of air cargo. Cheers
william-Indo
in
MPN Voice
1 year ago
hydroxycarbamide
Hello I was diagnosed with myeloma last December 2021 and I was advised to take aspirin 75mg and four times venesections however this August they’ve given me
hydroxycarbamide
.I am taking 2 x for four days and 3 x for three days.
Hello I was diagnosed with myeloma last December 2021 and I was advised to take aspirin 75mg and four times venesections however this August they’ve given me
hydroxycarbamide
.I am taking 2 x for four days and 3 x for three days.
kid12kg
in
British Heart Foundation
2 years ago
Redundant Colon anyone?
Curious as to the cause of my redundant colon, which has developed over the last 2 years, notably since commencing
hydroxycarbamide
. Last month I had my first colonoscopy and learned of this. I have a very distended belly (bloating) and it looks to be permanent.
Curious as to the cause of my redundant colon, which has developed over the last 2 years, notably since commencing
hydroxycarbamide
. Last month I had my first colonoscopy and learned of this. I have a very distended belly (bloating) and it looks to be permanent.
Hidden
in
MPN Voice
1 year ago
Drug interactions/conflicts
Hi everyone I am Coeliac and also have Essential Thrombocythemia for which I take
Hydroxycarbamide
.
Hi everyone I am Coeliac and also have Essential Thrombocythemia for which I take
Hydroxycarbamide
.
quanglewangle
in
MPN Voice
1 year ago
Hairloss
Does anyone else suffer from severe hair loss as a result of taking
Hydroxycarbamide
? Mine's nearly all gone now and I have to wear a wig, which I hate doing. I've discussed with my consultant and I'm planning on changing medication to Anagrelide or Interferon, for this reason.
Does anyone else suffer from severe hair loss as a result of taking
Hydroxycarbamide
? Mine's nearly all gone now and I have to wear a wig, which I hate doing. I've discussed with my consultant and I'm planning on changing medication to Anagrelide or Interferon, for this reason.
Sivasi
in
MPN Voice
1 year ago
Long distance flying and ET
Hi All I know this question has been asked before, but not recently, so things might have changed. I'm 74, diagnosed with ET Jak2 about a year ago and am on 500(?)mg Hydroxyurea - one tablet daily plus daily aspirin. Specialist has suggested an injection before flying - it will be a 15 hour flight.
Hi All I know this question has been asked before, but not recently, so things might have changed. I'm 74, diagnosed with ET Jak2 about a year ago and am on 500(?)mg Hydroxyurea - one tablet daily plus daily aspirin. Specialist has suggested an injection before flying - it will be a 15 hour flight.
NibsNanna
in
MPN Voice
1 year ago
new mutations
just had my second BMB a couple of months ago. Had been taking aspirin and monthly phlebotomy until 3 months ago when started hydroxyurea. My BMB now showed a new mutation IDH1 and allele burden increased from 24% to 52%. Didn’t need a phlebotomy this month but will be starting Besremi mid d June.
just had my second BMB a couple of months ago. Had been taking aspirin and monthly phlebotomy until 3 months ago when started hydroxyurea. My BMB now showed a new mutation IDH1 and allele burden increased from 24% to 52%. Didn’t need a phlebotomy this month but will be starting Besremi mid d June.
Teachme85
in
MPN Voice
1 year ago
Hydroxycarbamide
Been on
Hydroxycarbamide
for a few months I feel terrible, sore heads, mouth ulcers, fatigue ! When I have mentioned this to my consultant they don't seem to care I said I want to try rux but they say I should only be put on rux if my spleen is enlarged! I have stage one MF.
Been on
Hydroxycarbamide
for a few months I feel terrible, sore heads, mouth ulcers, fatigue ! When I have mentioned this to my consultant they don't seem to care I said I want to try rux but they say I should only be put on rux if my spleen is enlarged! I have stage one MF.
indy22
in
MPN Voice
2 years ago
Getting Specialist Help
I was diagnosed with ET Jak2 positive just over a year ago and being over 60 I was put straight into daily aspirin and
Hydroxycarbamide
.
I was diagnosed with ET Jak2 positive just over a year ago and being over 60 I was put straight into daily aspirin and
Hydroxycarbamide
.
Yoganana1
in
MPN Voice
1 year ago
Does Hydroxyurea affect kidneys?
I am 79 and diagnosed a year ago with ET JAK2. Previous to diagnosis my platelets were slowly rising and my kidney function was slowly decreasing. I have been taking 500 mg Hydroxyurea daily, then every other day, and now three days a week. Platelets are now 519. I just had recent labs.
I am 79 and diagnosed a year ago with ET JAK2. Previous to diagnosis my platelets were slowly rising and my kidney function was slowly decreasing. I have been taking 500 mg Hydroxyurea daily, then every other day, and now three days a week. Platelets are now 519. I just had recent labs.
Mirror368
in
MPN Voice
1 year ago
Mouth ulcers and hydroxy
Last week, I had a blocked salivary gland, not for the first time and nothing to do with
hydroxycarbamide
because I had this much before diagnosed with MPN. The swelling went down after a couple of days, but this ulcer came and won’t go away! Mouth wash, salt water and now trying TCP.
Last week, I had a blocked salivary gland, not for the first time and nothing to do with
hydroxycarbamide
because I had this much before diagnosed with MPN. The swelling went down after a couple of days, but this ulcer came and won’t go away! Mouth wash, salt water and now trying TCP.
Cokopops
in
MPN Voice
1 year ago
has anyone gotten a rash on their feet from hydroxyurea or just having thrombocytosis
I am reaching out to you wonderful people again. I have a red blotchy rash on my feet and have had this for a year. Someone called it micro vascular but I am not too sure what that is or if this is correct. I have been taking hydroxyurea since the fall of 2020, I have essential thrombocytosis jak
I am reaching out to you wonderful people again. I have a red blotchy rash on my feet and have had this for a year. Someone called it micro vascular but I am not too sure what that is or if this is correct. I have been taking hydroxyurea since the fall of 2020, I have essential thrombocytosis jak
kitttycat
in
MPN Voice
1 year ago
What actually causes weight gain?
I read that some of us on
hydroxycarbamide
, who are also JAK2 positive (self included), have experienced a weight gain of around 3 - 6 kg...or more. This has been the case for me (about a 4 kg gain) and has occurred over my first 2 years on this drug.
I read that some of us on
hydroxycarbamide
, who are also JAK2 positive (self included), have experienced a weight gain of around 3 - 6 kg...or more. This has been the case for me (about a 4 kg gain) and has occurred over my first 2 years on this drug.
Hidden
in
MPN Voice
1 year ago
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