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Hydroxycarbamide
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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
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
2 years 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
2 years ago
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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
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
2 years 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
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
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
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
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
2 years ago
Medication choices after hydroxyurea
I've posted before about the challenges associated with HU and my own efforts to keep my sensitive digestive tract happy over the last 2 plus years. Unfortunately, this past week was a bit challenging with every possible bad digestive tract issue presenting itself. I'm on the mend but have to accept
I've posted before about the challenges associated with HU and my own efforts to keep my sensitive digestive tract happy over the last 2 plus years. Unfortunately, this past week was a bit challenging with every possible bad digestive tract issue presenting itself. I'm on the mend but have to accept
saltmarsh
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
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
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
2 years ago
Prefibrotic Myelofibrosis and I hate Hydroxyurea (HU)
Recently diagnosed, first with ET. And put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage.
Recently diagnosed, first with ET. And put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage.
Apple238
in
Leukaemia Support
1 year ago
Prefibrotic myelofibrosis and I hate hydroxyurea (HU)
Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage. I resisted
Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from very bad side effects. Dr didn’t want to change med or dosage. I resisted
Apple238
in
MPN Voice
1 year ago
HU and prefibrotic myelofibrosis
Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from bad side effects. Dr didn’t want to change med or dosage. I resisted
Recently diagnosed first with ET. put on 500mg hydroxyurea daily with platelets at 617. After bone marrow aspiration and biopsy, diagnosis changed to prefibrotic myelofibrosis. HU had brought platelets down to 270 but I suffered from bad side effects. Dr didn’t want to change med or dosage. I resisted
Apple238
in
CLL Support
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
2 years 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
2 years 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
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