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Experiences with
Hydroxycarbamide
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Blood pressure
Hi, I have pcv and taking
hydroxycarbamide
and aspirin, plus I have a venesection every 3 months. I always seem to have high blood pressure, which no one seems the hospital seems concerned about, apart from me. Does anyone take tablets for high blood pressure and if so what? Many thanks George
Hi, I have pcv and taking
hydroxycarbamide
and aspirin, plus I have a venesection every 3 months. I always seem to have high blood pressure, which no one seems the hospital seems concerned about, apart from me. Does anyone take tablets for high blood pressure and if so what? Many thanks George
Georgehb
in
MPN Voice
6 years ago
Tamarin study update and a new study now recruiting
In PART A, patients must be resistant or intolerant to Hydroxyurea (
Hydroxycarbamide
) or have undergone treatment with interferon. In PART B, patients must be resistant or intolerant to Hydroxyurea (
Hydroxycarbamide
).
In PART A, patients must be resistant or intolerant to Hydroxyurea (
Hydroxycarbamide
) or have undergone treatment with interferon. In PART B, patients must be resistant or intolerant to Hydroxyurea (
Hydroxycarbamide
).
Mazcd
MPNVoice
in
MPN Voice
6 years ago
Ginseng & hydroxyurea
It's been over a month since I started taking Ginseng and it seems to be helping with the fatigue a little and every bit counts. 1,000 mg of Panax quinquefolius in the am. This is a ginseng that is grown locally and is also known as American ginseng. It was recommended over the Siberian ginseng because
It's been over a month since I started taking Ginseng and it seems to be helping with the fatigue a little and every bit counts. 1,000 mg of Panax quinquefolius in the am. This is a ginseng that is grown locally and is also known as American ginseng. It was recommended over the Siberian ginseng because
h2ogal
in
MPN Voice
5 years ago
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Discontinue Hydroxyurea
Had a visit with a new Hematologist who is a recognized expert in MPNs. He has recommended a different tx approach for my Polycythemia Vera. Based on my profile, he recommends discontinuing hydroxyurea and going with phlebotomy only. I am having troublesome side effects and the new doc says risks
Had a visit with a new Hematologist who is a recognized expert in MPNs. He has recommended a different tx approach for my Polycythemia Vera. Based on my profile, he recommends discontinuing hydroxyurea and going with phlebotomy only. I am having troublesome side effects and the new doc says risks
hunter5582
in
MPN Voice
5 years ago
PV: should I go to hydroxurea or not?Age : 62
Happy to find this MPN site. My story: Male 62 years old diagnosed with PV at 57. Live in Thailand so great hospitals at low cost. But no NHS.... I am fit and healthy...I make sure of that since the diagnosis. I feel really well. Do a venesection once a month without any problems..but drifting up to
Happy to find this MPN site. My story: Male 62 years old diagnosed with PV at 57. Live in Thailand so great hospitals at low cost. But no NHS.... I am fit and healthy...I make sure of that since the diagnosis. I feel really well. Do a venesection once a month without any problems..but drifting up to
Innessant
in
MPN Voice
5 years ago
Hydroxyurea break
I was on HU for many years and had it stop working. Switched to Anagrelide but having nasty side effects. Just wondering if anyone has had HU stop working and gone back on it after six months or a year break and had it be effective again. I asked my doctor but he didn’t know if that was a possibility
I was on HU for many years and had it stop working. Switched to Anagrelide but having nasty side effects. Just wondering if anyone has had HU stop working and gone back on it after six months or a year break and had it be effective again. I asked my doctor but he didn’t know if that was a possibility
Ladygolf
in
MPN Voice
5 years ago
Cindy12
I was diagnosed with ET at the age of 81 and am still here at 86 thanks to
Hydroxycarbamide
! I hope I never have to have another BMB as it was agony both during the procedure and for several days afterwards! I have been interested in reading about your experiences. Thanks for sharing them.
I was diagnosed with ET at the age of 81 and am still here at 86 thanks to
Hydroxycarbamide
! I hope I never have to have another BMB as it was agony both during the procedure and for several days afterwards! I have been interested in reading about your experiences. Thanks for sharing them.
Cindy12
in
MPN Voice
6 years ago
Cindy12
I was diagnosed with ET at the age of 81 and am still here at 86 thanks to
Hydroxycarbamide
! As for the BMB I hope I never have to undergo that again. It was agony both during the procedure and for several days afterwards! I have been interested in reading about all your experiences.
I was diagnosed with ET at the age of 81 and am still here at 86 thanks to
Hydroxycarbamide
! As for the BMB I hope I never have to undergo that again. It was agony both during the procedure and for several days afterwards! I have been interested in reading about all your experiences.
Cindy12
in
MPN Voice
6 years ago
Anyone with a Primary Immune Deficiency or fatigue affected by Hydroxyurea?
Dear Folks, Does anyone here with an MPN also have a Primary Immune Deficiency (PID) like Common Variable Immune Deficiency (CVID? I was diagnosed with that around 8 years ago and although I get regular infusions of other’s plasma to give me antibodies, it still leaves my immune system less strong than
Dear Folks, Does anyone here with an MPN also have a Primary Immune Deficiency (PID) like Common Variable Immune Deficiency (CVID? I was diagnosed with that around 8 years ago and although I get regular infusions of other’s plasma to give me antibodies, it still leaves my immune system less strong than
katiewalsh
in
MPN Voice
5 years ago
Sometimes feel good and sometimes not
I was just diagnosed about 5 weeks ago with ET. I am 69. Blood work for Jak2 was negative. Waiting for CALR and MLP result. No bone marrow done yet. I have been on on 500 mg hydroxyurea for 5weeks. I wondered if anyone else sometimes felt really good and sometimes felt bad... weak and head goofy
I was just diagnosed about 5 weeks ago with ET. I am 69. Blood work for Jak2 was negative. Waiting for CALR and MLP result. No bone marrow done yet. I have been on on 500 mg hydroxyurea for 5weeks. I wondered if anyone else sometimes felt really good and sometimes felt bad... weak and head goofy
Cookiebaker
in
MPN Voice
6 years ago
I’m new and so pleased that this organisation exists.
I had my diagnosis of thrombocytaemia on 1 Aug 2018 following high white (platelet) count on a routine blood test I was prescribed
hydroxycarbamide
100 mugs and after 4 weeks my levels had reduced From ? 7,500 or is it 750 to 4,500 /450 I was told this was a good response to treatment.
I had my diagnosis of thrombocytaemia on 1 Aug 2018 following high white (platelet) count on a routine blood test I was prescribed
hydroxycarbamide
100 mugs and after 4 weeks my levels had reduced From ? 7,500 or is it 750 to 4,500 /450 I was told this was a good response to treatment.
trotty100
in
MPN Voice
6 years ago
Best time to take Hydroxy....?
Am starting 500mg
Hydroxycarbamide
next week to prepare for a heart operation early February. When is the best time of day to take it?
Am starting 500mg
Hydroxycarbamide
next week to prepare for a heart operation early February. When is the best time of day to take it?
Eadaoin
in
MPN Voice
6 years ago
Does anyone know whether you can take vitamin B12 whilst taking hydroxycarbamide?
I have read that vitamin B12 can help anaemia and some cancers, I've been taking
hydroxycarbamide
for nearly a year, is it safe to take vitamin B12?
I have read that vitamin B12 can help anaemia and some cancers, I've been taking
hydroxycarbamide
for nearly a year, is it safe to take vitamin B12?
lizl
in
MPN Voice
6 years ago
hydroxyurea side effects?
Hi everyone! I I was recently diagnosed with polycythemia vera and I would like to know what side effects have been experienced by others taking hydroxyurea. Any comment will be welcome!
Hi everyone! I I was recently diagnosed with polycythemia vera and I would like to know what side effects have been experienced by others taking hydroxyurea. Any comment will be welcome!
IsabelPV
in
MPN Voice
6 years ago
Hydroxycarbamide
My partner has just started on 500mg
hydroxycarbamide
. He was diagnosed with PV 5 months ago. Is this quick starting on this drug. They have been using vivisection to bring his red blood count down prior to this. This is all so confusing and scary for us.
My partner has just started on 500mg
hydroxycarbamide
. He was diagnosed with PV 5 months ago. Is this quick starting on this drug. They have been using vivisection to bring his red blood count down prior to this. This is all so confusing and scary for us.
Dennykev
in
MPN Voice
6 years ago
First day of Pegasys.
I came off of
Hydroxycarbamide
after my skin came out in lumps and bumps, including my corneas.
I came off of
Hydroxycarbamide
after my skin came out in lumps and bumps, including my corneas.
Raphael_UK
in
MPN Voice
6 years ago
TENS machines.
As a PV patient on Rivaroxaban,
Hydroxycarbamide
and Amlodipine, I know we’re not allowed ibruprofen. Does anyone have experience with or know whether we can use a TENS machine for muscle pain relief? Thanks
As a PV patient on Rivaroxaban,
Hydroxycarbamide
and Amlodipine, I know we’re not allowed ibruprofen. Does anyone have experience with or know whether we can use a TENS machine for muscle pain relief? Thanks
Sallush
in
MPN Voice
6 years ago
Hydroxy and shingles vaccination
My wife went for a flu & shingles jab today but was advised by the nurse not to have the shingles vaccination because it is a live virus and could affect me as I am on
hydroxycarbamide
. Has anyone else come across this? John
My wife went for a flu & shingles jab today but was advised by the nurse not to have the shingles vaccination because it is a live virus and could affect me as I am on
hydroxycarbamide
. Has anyone else come across this? John
Ovingite
in
MPN Voice
6 years ago
Mouth/Tongue Ulcers
Been on
Hydroxycarbamide
for a year & a half - 2 x 500mg daily. Since August, every three/four weeks I’ve been getting a very sore tongue which makes eating unpleasant. Anyone else had this?
Been on
Hydroxycarbamide
for a year & a half - 2 x 500mg daily. Since August, every three/four weeks I’ve been getting a very sore tongue which makes eating unpleasant. Anyone else had this?
Albt4z
in
MPN Voice
6 years ago
Alternative medication
I recently wrote about the side effects I am having to
Hydroxycarbamide
and had numerous replies stating they were experiencing the same symptoms fatigue nauseous breathlessness to name a few.
I recently wrote about the side effects I am having to
Hydroxycarbamide
and had numerous replies stating they were experiencing the same symptoms fatigue nauseous breathlessness to name a few.
Heather270240
in
MPN Voice
6 years ago
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