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Experiences with
Hydroxycarbamide
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LDN for ET/Jak2+ ??
Has anyone had experience or know if LDN might help lower platelets ? As the Jak2 mutation is acquired not inherited I wonder if LDN could turn that gene off? I am currently on Hydroxyurea only 500 mg 4x week. Would I need to go off of it? I'll check with my doctors but I wondered if anyone had any thought
Has anyone had experience or know if LDN might help lower platelets ? As the Jak2 mutation is acquired not inherited I wonder if LDN could turn that gene off? I am currently on Hydroxyurea only 500 mg 4x week. Would I need to go off of it? I'll check with my doctors but I wondered if anyone had any thought
DH65
in
LDN Research Trust
8 years ago
New Introduction
Hi Everyone, I have to say I'm so glad I found this list. I don't feel so alone now. I am in the US California. I have ET with JAK2 positive since about 2005, daily aspirin at 81 mg and I resisted the Hydroxyurea until Jan of this year as my platelets jumped into 900 range. I am now on 3 of the 500
Hi Everyone, I have to say I'm so glad I found this list. I don't feel so alone now. I am in the US California. I have ET with JAK2 positive since about 2005, daily aspirin at 81 mg and I resisted the Hydroxyurea until Jan of this year as my platelets jumped into 900 range. I am now on 3 of the 500
DH65
in
MPN Voice
8 years ago
Hello,new here.
My husband was diagnosed with ET and PRV in his mid thirties although his symptoms had been dismissed for years as anxiety.He's JAK2 positive and has been on Hydroxyurea for ten years now. He is currently experiencing some worrying symptoms and I've joined looking for support and advice. His liver is
My husband was diagnosed with ET and PRV in his mid thirties although his symptoms had been dismissed for years as anxiety.He's JAK2 positive and has been on Hydroxyurea for ten years now. He is currently experiencing some worrying symptoms and I've joined looking for support and advice. His liver is
Ericisadogg
in
MPN Voice
8 years ago
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My life story with SCD
I am 31 years old living with SCD. I have never had blood transfusions but always fall sick at-least every once in a month in rare cases once in three months. I was also advised for a total hips replacement when I was 14 years but Ignored the idea because I was too young according to my parents. At some
I am 31 years old living with SCD. I have never had blood transfusions but always fall sick at-least every once in a month in rare cases once in three months. I was also advised for a total hips replacement when I was 14 years but Ignored the idea because I was too young according to my parents. At some
arinzemuo21
in
Sickle Cell Society
8 years ago
Any dietary advice for a new diagnosis of ET?
My consultant wants to put me on
hydroxycarbamide
, which I am not keen on, so i wondered if anyone has any advice on diet for reducing plateltes?
My consultant wants to put me on
hydroxycarbamide
, which I am not keen on, so i wondered if anyone has any advice on diet for reducing plateltes?
tessa46
in
MPN Voice
8 years ago
ET or RT, that is the real question?
Hey everyone out there... :) My name is Steve from Sydney (down under) Australia etc... Thought it might be useful to have a chat and share some experiences here with the rest of the MPN community. I was diagnosed w/ ET only in the last 2 weeks (May 2016). They seemed to assume this finding rather quickly
Hey everyone out there... :) My name is Steve from Sydney (down under) Australia etc... Thought it might be useful to have a chat and share some experiences here with the rest of the MPN community. I was diagnosed w/ ET only in the last 2 weeks (May 2016). They seemed to assume this finding rather quickly
socrates_8
in
MPN Voice
8 years ago
Need to reduce inflammation
I've been put in
hydroxycarbamide
even though platelets were only 550 at that time. I've never had any clots. I am not aware of any ET symptoms as yet. Thank you
I've been put in
hydroxycarbamide
even though platelets were only 550 at that time. I've never had any clots. I am not aware of any ET symptoms as yet. Thank you
130396
in
MPN Voice
8 years ago
Tremors
I've seen a few references here regarding "tremors ", I have noticed increase in tremors in my left hand when holding light items like papers. Is this related to ET or hydroxyurea medication ? My boss questioned me about it this week said someone in the office commented. Looking for spring
I've seen a few references here regarding "tremors ", I have noticed increase in tremors in my left hand when holding light items like papers. Is this related to ET or hydroxyurea medication ? My boss questioned me about it this week said someone in the office commented. Looking for spring
Kerri2
in
MPN Voice
8 years ago
ET and tiredness
I have been taking
hydroxycarbamide
500mg caps each day. My platelets have stayed around 500 level..I go to hospital tomorrow to get bloods done etc. My main symptom apart from mouth ulcers) is tiredness.Don't know whether this is due to my age, the condition or the hydroxy.
I have been taking
hydroxycarbamide
500mg caps each day. My platelets have stayed around 500 level..I go to hospital tomorrow to get bloods done etc. My main symptom apart from mouth ulcers) is tiredness.Don't know whether this is due to my age, the condition or the hydroxy.
diane1959
in
MPN Voice
8 years ago
Splenectomy options
He has just started on ruxolitinib in place of the
hydroxycarbamide
, but has been told by his gastro consultant that the only option to stop the bleeding is to have his spleen removed.
He has just started on ruxolitinib in place of the
hydroxycarbamide
, but has been told by his gastro consultant that the only option to stop the bleeding is to have his spleen removed.
Seashell226
in
MPN Voice
8 years ago
Hydroxycarbamide and Amitriptyline
I have been taking Amitriptyline 10mg for some time for back ache. Last week I started to take Hydroxy for PV. Amitrip has a dehydrating effect which of course is not good with the hydroxy. I have a feeling that someone had posted and been prescribed an alternative to Amitrip. I have looked back
I have been taking Amitriptyline 10mg for some time for back ache. Last week I started to take Hydroxy for PV. Amitrip has a dehydrating effect which of course is not good with the hydroxy. I have a feeling that someone had posted and been prescribed an alternative to Amitrip. I have looked back
Fionnuaghla
in
MPN Voice
8 years ago
Hydroxycarbamide
Well today I picked up my repeat prescription and the chemist have given me Hydrea by Squibb and I normally have
Hydroxycarbamide
from a company called Medac, although they are the same drug, the Squbb one are a bright pink and grey and some of the ingredients are different, have spoken with Boots the
Well today I picked up my repeat prescription and the chemist have given me Hydrea by Squibb and I normally have
Hydroxycarbamide
from a company called Medac, although they are the same drug, the Squbb one are a bright pink and grey and some of the ingredients are different, have spoken with Boots the
Superwoman
in
MPN Voice
8 years ago
Result
Hi folks, well Boots the Chemist relented and have given me Medac
Hydroxycarbamide
. Spoke with my GPs and they now have put on my medication repeat Medac so hopefully the chemist will see this and prescribe in future. Hurrah!!!
Hi folks, well Boots the Chemist relented and have given me Medac
Hydroxycarbamide
. Spoke with my GPs and they now have put on my medication repeat Medac so hopefully the chemist will see this and prescribe in future. Hurrah!!!
Superwoman
in
MPN Voice
8 years ago
A day in Blackpool
A venesection was arranged for me for later in the afternoon and I have been prescribed
hydroxycarbamide
. It all feels more real now especially when I read the instructions with the tablets which advised rubber gloves to handle.
A venesection was arranged for me for later in the afternoon and I have been prescribed
hydroxycarbamide
. It all feels more real now especially when I read the instructions with the tablets which advised rubber gloves to handle.
Fionnuaghla
in
MPN Voice
8 years ago
Platelets rising whilst on hydroxycarbamide?
Does anyone have any experience of their platelets rising whilst on a relatively high (1.5g) daily dose of
hydroxycarbamide
? If so which alternative drug did you go for, & how do you feel (tolerate) it? I suspect I will plump for interferon b (analagride SE's don't sound very nice)?
Does anyone have any experience of their platelets rising whilst on a relatively high (1.5g) daily dose of
hydroxycarbamide
? If so which alternative drug did you go for, & how do you feel (tolerate) it? I suspect I will plump for interferon b (analagride SE's don't sound very nice)?
Bill_E
in
MPN Voice
8 years ago
Changing meds :(
I've been on
hydroxycarbamide
for 3 yrs which worked wonders in bringing my platelets down fro 1800 to around 600. They have started to rise again and they want to change my meds. I've been lucky and had very few side effects from hydrea but am worried now.
I've been on
hydroxycarbamide
for 3 yrs which worked wonders in bringing my platelets down fro 1800 to around 600. They have started to rise again and they want to change my meds. I've been lucky and had very few side effects from hydrea but am worried now.
soomoo
in
MPN Voice
8 years ago
Hydrea on wrong day. . .
Hi all, I am prescribed hydroxyurea (500mg) on Monday, Wednesday and Friday. Last night (Tuesday) I was at the cinema and was very tired when I returned. As a consequence, I mistakenly took the pills from my 'Wednesday' medicine-organiser, so took my hydrea. I dont intend to take it tonight but will
Hi all, I am prescribed hydroxyurea (500mg) on Monday, Wednesday and Friday. Last night (Tuesday) I was at the cinema and was very tired when I returned. As a consequence, I mistakenly took the pills from my 'Wednesday' medicine-organiser, so took my hydrea. I dont intend to take it tonight but will
Karol_Rua
in
MPN Voice
8 years ago
Diet therapy
When I started on
hydroxycarbamide
a few months ago I immediately had a problem with constipation. I tried a few over the counter remedies with mixed success. A forum member suggested a Nutri Bullet. On Monday I bought the £30 Lidl version and began blitzing raw kale and other veg into smoothies.
When I started on
hydroxycarbamide
a few months ago I immediately had a problem with constipation. I tried a few over the counter remedies with mixed success. A forum member suggested a Nutri Bullet. On Monday I bought the £30 Lidl version and began blitzing raw kale and other veg into smoothies.
Shortcyclist
in
MPN Voice
9 years ago
Diagnosed with Essential Thrombocytosis with JAK2 negative with some of my red blood cells abnormally-shaped.
Hello I'm new to this forum and new to this Essential Thrombocytosis arena. I first went to my doctor for a routine blood test in October 2015 the blood test came back with a high platelet count of 862,000 I was ordered to have another blood test to see if there were any discrepancies. I went to a hematologist
Hello I'm new to this forum and new to this Essential Thrombocytosis arena. I first went to my doctor for a routine blood test in October 2015 the blood test came back with a high platelet count of 862,000 I was ordered to have another blood test to see if there were any discrepancies. I went to a hematologist
Cupcake5967
in
MPN Voice
9 years ago
Polythemia vera
I've been taking low dose aspirin and 1000mg of
hydroxycarbamide
daily. The side effects from the medication is dreadful such as headaches, nausea etc.. does anyone have any suggestions what to eat when taking meds to ease the feeling of nausea. Thank you 😊
I've been taking low dose aspirin and 1000mg of
hydroxycarbamide
daily. The side effects from the medication is dreadful such as headaches, nausea etc.. does anyone have any suggestions what to eat when taking meds to ease the feeling of nausea. Thank you 😊
Tracey123
in
MPN Voice
9 years ago
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