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Experiences with
Hydroxycarbamide
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Bloating and weight gain solutions anyone?
I read that
hydroxycarbamide
treatment is likely to produce a weight gain. Even though I am now on the smallest dose (500mg/day), dealing with a bloated tummy is so difficult. I should add that I have ET and have been on treatment now for close to 3 years.
I read that
hydroxycarbamide
treatment is likely to produce a weight gain. Even though I am now on the smallest dose (500mg/day), dealing with a bloated tummy is so difficult. I should add that I have ET and have been on treatment now for close to 3 years.
Hidden
in
MPN Voice
9 months ago
Hydroxycarbamide sight
does anyone know if HU can affect vision ? If so, in what way?
does anyone know if HU can affect vision ? If so, in what way?
130396
in
MPN Voice
1 year ago
hydroxycarbamide v Anagrelide
hi I’ve been on
Hydroxycarbamide
for nearly a year and for the past two months have had mouth ulcers. I drink plenty of water. Appointment with Pharmacist and she said I may be better with Anagrelide, but she would arrange an appointment with Haematologist before changing.
hi I’ve been on
Hydroxycarbamide
for nearly a year and for the past two months have had mouth ulcers. I drink plenty of water. Appointment with Pharmacist and she said I may be better with Anagrelide, but she would arrange an appointment with Haematologist before changing.
Hannah2308
in
MPN Voice
1 year ago
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Aching legs
My platelets are about 700 and I’m on 10 x 500g of
hydroxycarbamide
a week. I’m also on Diltiazem and Rivaroxaban for AFib Thankyou
My platelets are about 700 and I’m on 10 x 500g of
hydroxycarbamide
a week. I’m also on Diltiazem and Rivaroxaban for AFib Thankyou
Juliet46
in
MPN Voice
11 months ago
Anagrelide in UK and in the USA😱
My long suffering wife has been taking Anagrelide and a little
hydroxycarbamide
for five years now. During these five years she has endured numerous upper GI bleeds, and endoscopies, which have never found the source of the bleeds.
My long suffering wife has been taking Anagrelide and a little
hydroxycarbamide
for five years now. During these five years she has endured numerous upper GI bleeds, and endoscopies, which have never found the source of the bleeds.
jointpain
in
MPN Voice
9 months ago
E.T. JAK 2 at 90 years of age
As I read the literature I realised the
hydroxycarbamide
(500 gems a day) could be a life changer I didn’t want. My research on my disease has led me to you. And as I read your stories it opened up the world of Thrombocytosis and what it meant for different people.
As I read the literature I realised the
hydroxycarbamide
(500 gems a day) could be a life changer I didn’t want. My research on my disease has led me to you. And as I read your stories it opened up the world of Thrombocytosis and what it meant for different people.
Suzukigirl
in
MPN Voice
9 months ago
ET/Hydroxycarbamide/ Low JAK2 levels - Another update - in case it is useful to anyone.
However, the recent BMB has confirmed ET JAK2 and I continue to take
Hydroxycarbamide
. So everything is as it was. I realise how complicated my feelings are about this experience are.
However, the recent BMB has confirmed ET JAK2 and I continue to take
Hydroxycarbamide
. So everything is as it was. I realise how complicated my feelings are about this experience are.
Cassandra61
in
MPN Voice
10 months ago
Hydroxycarbamide/ Intestinal Problems
Hello my friends. Just a question, has anyone taking Hydroxy suffered inflammation of the colon? I’ve been on HU for 5 years and tolerated it fairly well. Recently however I am suffering bad symptoms similar to IBS with stomach cramps and many trips to the loo. I have also sufffered pain in right
Hello my friends. Just a question, has anyone taking Hydroxy suffered inflammation of the colon? I’ve been on HU for 5 years and tolerated it fairly well. Recently however I am suffering bad symptoms similar to IBS with stomach cramps and many trips to the loo. I have also sufffered pain in right
azaelea
in
MPN Voice
1 year ago
Overdue Update
I am not sure when I last posted my health situation but think it was mentioning abdominal pains and querying whether
Hydroxycarbamide
could be affecting my colon. I’ll try and keep this short. From midJune I suffered constant symptoms like IBS(D) .
I am not sure when I last posted my health situation but think it was mentioning abdominal pains and querying whether
Hydroxycarbamide
could be affecting my colon. I’ll try and keep this short. From midJune I suffered constant symptoms like IBS(D) .
azaelea
in
MPN Voice
9 months ago
Hydroxycarbamide and difficulty swallowing
The
Hydroxycarbamide
is keeping my blood levels in good order.
The
Hydroxycarbamide
is keeping my blood levels in good order.
Jelbea
in
MPN Voice
1 year ago
Ruxolitinib and Hydroxycarbamide
Hi everyone as I posted befor I was on
hydroxycarbamide
for 16 years. I got worse during covid and was not being seen by haematology only phone calls. My platelets kept going up and they kept putting my
hydroxycarbamide
up.
Hi everyone as I posted befor I was on
hydroxycarbamide
for 16 years. I got worse during covid and was not being seen by haematology only phone calls. My platelets kept going up and they kept putting my
hydroxycarbamide
up.
Mudmaker
in
MPN Voice
1 year ago
Treatment options
The treatment us working but
hydroxycarbamide
is not a nice drug. There is an option to go onto interferon or possibly the Mithridate trial, should I change?
The treatment us working but
hydroxycarbamide
is not a nice drug. There is an option to go onto interferon or possibly the Mithridate trial, should I change?
Swim360
in
MPN Voice
1 year ago
Swollen stomach
I am currently on 2 500mg
hydroxycarbamide
1 day then 1 500mg the next. My bloods are done every 4 weeks at a local walk in centre. Then a nurse phones me the day after with my blood count and just sends my medication out they started at 1119 now they are 411.
I am currently on 2 500mg
hydroxycarbamide
1 day then 1 500mg the next. My bloods are done every 4 weeks at a local walk in centre. Then a nurse phones me the day after with my blood count and just sends my medication out they started at 1119 now they are 411.
Mandz12
in
MPN Voice
11 months ago
Hydroxycarbamide & muscle pain
and taking
Hydroxycarbamide
found that after being on HU they have started getting muscle pain especially in upper back? I was put on
Hydroxycarbamide
due to age but I didn’t have any symptoms at all and no thrombotic events.
and taking
Hydroxycarbamide
found that after being on HU they have started getting muscle pain especially in upper back? I was put on
Hydroxycarbamide
due to age but I didn’t have any symptoms at all and no thrombotic events.
130396
in
MPN Voice
1 year ago
missed taking my Hydroxycarbamide
hi I forgot to take my Hydroxy 1500mg last night at tea time!! So I’ve just taken them now at 11.45 am Just wondering if it’s safe to take my usual dose of 1500mg again tonight, but maybe a bit later before going to bed around 23.30 pm ??
hi I forgot to take my Hydroxy 1500mg last night at tea time!! So I’ve just taken them now at 11.45 am Just wondering if it’s safe to take my usual dose of 1500mg again tonight, but maybe a bit later before going to bed around 23.30 pm ??
Kizzy03
in
MPN Voice
1 year ago
Inflammation/ platelets
I’ve recently had my inflammation markets tested and my CRp is 4 top of range is 5 My ESR is 53 and top of range is 20 My platted have increaed and so they have increased my
Hydroxycarbamide
I’ve recently had my inflammation markets tested and my CRp is 4 top of range is 5 My ESR is 53 and top of range is 20 My platted have increaed and so they have increased my
Hydroxycarbamide
130396
in
MPN Voice
1 year ago
Weight issues anyone?
Since starting
hydroxycarbamide
(Jan 2021) and like many others, I've gained weight. (My specialist considers this is better than losing weight on this drug). I've seen a gastroenterologist and recently a dietician . They were unable to offer any concrete plan to get back to my pre-meds weight.
Since starting
hydroxycarbamide
(Jan 2021) and like many others, I've gained weight. (My specialist considers this is better than losing weight on this drug). I've seen a gastroenterologist and recently a dietician . They were unable to offer any concrete plan to get back to my pre-meds weight.
Hidden
in
MPN Voice
11 months ago
mouth ulcers
anyone have mouth ulcers on tongue whilst taking
hydroxycarbamide
? I have ET jak 2 Painful mouth ulcers on my tongue. Any suggestions how to treat ? Thanks Hazel
anyone have mouth ulcers on tongue whilst taking
hydroxycarbamide
? I have ET jak 2 Painful mouth ulcers on my tongue. Any suggestions how to treat ? Thanks Hazel
HazeBlue
in
MPN Voice
1 year ago
ET /Hydroxycarbamide Low JAK2 levels
Morning everyone, Help! I was diagnosed with ET in 2013 and my platelet levels were stable and under 600 during this time and I just took asprin. When I reached 60, after much discussion, I began a low dose of Hydroxy to counteract the increased risk of clotting due to my age. JAK2 was confirmed at
Morning everyone, Help! I was diagnosed with ET in 2013 and my platelet levels were stable and under 600 during this time and I just took asprin. When I reached 60, after much discussion, I began a low dose of Hydroxy to counteract the increased risk of clotting due to my age. JAK2 was confirmed at
Cassandra61
in
MPN Voice
1 year ago
ET/Hydroxycarbamide/ Low JAK2 levels - An update
So here is an update following last week's consultant visit. First though thank you more than I can say to everyone who replied to me with information and such kindness - I could not have got through those few days without you. Anyway to the point. So I have just written myself a timeline of my ET
So here is an update following last week's consultant visit. First though thank you more than I can say to everyone who replied to me with information and such kindness - I could not have got through those few days without you. Anyway to the point. So I have just written myself a timeline of my ET
Cassandra61
in
MPN Voice
1 year ago
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