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Experiences with
Hydroxycarbamide
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Hydroxycarbamide v Pegasys Interferon
Hi I am due to start having treatment for PV, so far have just been having aspirin daily and venesections when needed. My haematological thinks it's time to start with treatment and I have been fortunate to have been offered the choice between the two. I am leaning towards interferon but am worried as
Hi I am due to start having treatment for PV, so far have just been having aspirin daily and venesections when needed. My haematological thinks it's time to start with treatment and I have been fortunate to have been offered the choice between the two. I am leaning towards interferon but am worried as
MicheleL
in
MPN Voice
9 years ago
Feel like I am hitting my head against a brick wall
He looked at all my blood results and because the
Hydroxycarbamide
has brought my blood levels in order, he refused to refer me. I cried all the way out of the surgery. It's the same story that I have seen here, GP's just won't look past the blood results.
He looked at all my blood results and because the
Hydroxycarbamide
has brought my blood levels in order, he refused to refer me. I cried all the way out of the surgery. It's the same story that I have seen here, GP's just won't look past the blood results.
jillydabrat
in
MPN Voice
9 years ago
Introduction
Hello, I was diagnosed with essential thrombocythemia September of 2015. I've was having symptoms of itchy skin, fatigue (like I had been in battle all night). My GP ordered blood work and found my platelets at that time were in the 600's. I was sent to a Hematologist who ordered a BMB, couldn't
Hello, I was diagnosed with essential thrombocythemia September of 2015. I've was having symptoms of itchy skin, fatigue (like I had been in battle all night). My GP ordered blood work and found my platelets at that time were in the 600's. I was sent to a Hematologist who ordered a BMB, couldn't
Cbreeze0182
in
MPN Voice
9 years ago
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Does anybody else feel like your clinicians think you are talking out of your backside when you tell them how ill you feel?
After 2 rounds of venous section and being prescribed
hydroxycarbamide
my platelet level is now within normal range so I have been transferred to the care of a specialist nurse for continuation of care but I seem to know more about my condition than she does!
After 2 rounds of venous section and being prescribed
hydroxycarbamide
my platelet level is now within normal range so I have been transferred to the care of a specialist nurse for continuation of care but I seem to know more about my condition than she does!
jillydabrat
in
MPN Voice
9 years ago
Recently diagnosed..
I was put straight away on
Hydroxycarbamide
, and I now I feel muscle and joint pains, and I'm not sure if this is normal. I wonder if anybody could share their experience of symptoms please, and if there are any natural alternatives to this horrible treatment.. Many thanks
I was put straight away on
Hydroxycarbamide
, and I now I feel muscle and joint pains, and I'm not sure if this is normal. I wonder if anybody could share their experience of symptoms please, and if there are any natural alternatives to this horrible treatment.. Many thanks
Hidden
in
MPN Voice
9 years ago
ET and weight Gain
Hello, I was diagnosed with ET in 2007 Jak 2 +. I am on Hydroxyurea daily for the rest of my life. I am so glad i finally found a place with people who have this rare disorder. I too have gained 25 lbs slowly over the years and i am tall and slender and not overweight until now. It has been a slow gain
Hello, I was diagnosed with ET in 2007 Jak 2 +. I am on Hydroxyurea daily for the rest of my life. I am so glad i finally found a place with people who have this rare disorder. I too have gained 25 lbs slowly over the years and i am tall and slender and not overweight until now. It has been a slow gain
sugarbear56
in
MPN Voice
9 years ago
Hydroxycarbamide
I've been taking 1500mg for a few years now, I take three capsules along with an aspirin all at the same time. Does anyone else do this or do you spread it throughout the day, ie 1 tablet 3 times a day. Reason I ask is maybe this would help my nausea feeling if I spread them out. I have ET am make
I've been taking 1500mg for a few years now, I take three capsules along with an aspirin all at the same time. Does anyone else do this or do you spread it throughout the day, ie 1 tablet 3 times a day. Reason I ask is maybe this would help my nausea feeling if I spread them out. I have ET am make
stevenjust
in
MPN Voice
9 years ago
Hydroxycarbamide AM or PM
Hi all, would like to know when you take your meds, AM or PM, any suggestions like on a full stomach, empty stomach, lots of water (kinda hard to do at night) yogurt etc. Also I have IBS the constipation side, does anyone have any problems with constipation with this medicine and if so what do you take
Hi all, would like to know when you take your meds, AM or PM, any suggestions like on a full stomach, empty stomach, lots of water (kinda hard to do at night) yogurt etc. Also I have IBS the constipation side, does anyone have any problems with constipation with this medicine and if so what do you take
mickey64
in
MPN Voice
9 years ago
New Gal...
I was diagnosed in 2007 with PV, at 40 years old. I have been told all along that it's not cancer exactly, but cancer-like. Well, I finally got my doctor to admit that it IS cancer, "a rare form of a non-curable progressive leukemia". I guess I should have asked more questions but I didn't know what
I was diagnosed in 2007 with PV, at 40 years old. I have been told all along that it's not cancer exactly, but cancer-like. Well, I finally got my doctor to admit that it IS cancer, "a rare form of a non-curable progressive leukemia". I guess I should have asked more questions but I didn't know what
BeckyM4
in
MPN Voice
9 years ago
ET, high cholesterol and statins
HI guys. I've just had a cholesterol clinic appointment and learnt some interesting stuff which I'd like to check out and share with you. My consultant there (fabulous man!) gave me 50 minutes of his time, shared a paper with me and listened with fascination to me, and spoke a lot of sense, with lots
HI guys. I've just had a cholesterol clinic appointment and learnt some interesting stuff which I'd like to check out and share with you. My consultant there (fabulous man!) gave me 50 minutes of his time, shared a paper with me and listened with fascination to me, and spoke a lot of sense, with lots
lizzieET
in
MPN Voice
9 years ago
Dropping Hydroxycarbamide dosage
As my blood counts are dropping I've now been told to stop
Hydroxycarbamide
at the weekends and take 500 mg Mon-Fri. I just wondered if anyone has had any side effects from stopping taking it at the weekends.
As my blood counts are dropping I've now been told to stop
Hydroxycarbamide
at the weekends and take 500 mg Mon-Fri. I just wondered if anyone has had any side effects from stopping taking it at the weekends.
MarkD6701
in
MPN Voice
9 years ago
Polycynthemia Vera
Been on
hydroxycarbamide
since July following suspension of plebotomy. Initially my 500mg a day seemed to have no side effects but worryingly in the last monthor so i seem to be plagued with bone pains which sees to come from nowhere and severe gout attacks(knee and feet).
Been on
hydroxycarbamide
since July following suspension of plebotomy. Initially my 500mg a day seemed to have no side effects but worryingly in the last monthor so i seem to be plagued with bone pains which sees to come from nowhere and severe gout attacks(knee and feet).
sealfleet
in
MPN Voice
9 years ago
Flu and other vaccines
As I'll be entitled to get the flu vaccine due to being on
Hydroxycarbamide
I wondered what else is worth having? Is it worth getting the pneumonia one as well? I don't want to go into winter catching all sorts of bugs with a lowered immune system.
As I'll be entitled to get the flu vaccine due to being on
Hydroxycarbamide
I wondered what else is worth having? Is it worth getting the pneumonia one as well? I don't want to go into winter catching all sorts of bugs with a lowered immune system.
MarkD6701
in
MPN Voice
9 years ago
Alternatives to HU
What alternatives to
hydroxycarbamide
or additions to HU have people experienced when it has stopped working efficiently.
What alternatives to
hydroxycarbamide
or additions to HU have people experienced when it has stopped working efficiently.
liarose
in
MPN Voice
9 years ago
Cataracts
Hi my merry folks, just wondering if anyone else has had this problem, have just been diagnosed with Cataracts left really bad, there was no sign of them last year, have just appeared could it be the
Hydroxycarbamide
that has caused them???
Hi my merry folks, just wondering if anyone else has had this problem, have just been diagnosed with Cataracts left really bad, there was no sign of them last year, have just appeared could it be the
Hydroxycarbamide
that has caused them???
Superwoman
in
MPN Voice
9 years ago
Fever and ET
I take
Hydroxycarbamide
500mg one day and 1000mg the next, plus aspirin of course. My platelet count last week was 850. I have been in hospital twice in the last month with a fever of unknown origin, with temperatures of up to 41.5.
I take
Hydroxycarbamide
500mg one day and 1000mg the next, plus aspirin of course. My platelet count last week was 850. I have been in hospital twice in the last month with a fever of unknown origin, with temperatures of up to 41.5.
awlancaster
in
MPN Voice
9 years ago
ET and Ulcers!
I take
Hydroxycarbamide
500/1000mg on alternative days plus the obligatory aspirin! This has brought my count down to about 500 where it has stayed about level. A few months ago I had a spell of painful mouth ulcers so I was taken off the Hydroxy for a month (while my count when back up to 1000).
I take
Hydroxycarbamide
500/1000mg on alternative days plus the obligatory aspirin! This has brought my count down to about 500 where it has stayed about level. A few months ago I had a spell of painful mouth ulcers so I was taken off the Hydroxy for a month (while my count when back up to 1000).
Calmat
in
MPN Voice
9 years ago
Thank you
Had my first check up after being diagnosed with ET two months ago and the
Hydroxycarbamide
is working! Platelets are on the way down so it's keep taking the treatment and back in 8 weeks for clinic.
Had my first check up after being diagnosed with ET two months ago and the
Hydroxycarbamide
is working! Platelets are on the way down so it's keep taking the treatment and back in 8 weeks for clinic.
YogaLover
in
MPN Voice
9 years ago
Breathlessness
I watched the Forum. Very interesting, but I have most symptoms well under control, including fatigue, my quality of life is excellent. But no-one mentions breathlessness, it is my overriding symptom now, worse in hot, humid weather. I walk up hills, walk an hour every day, but the slightest incline
I watched the Forum. Very interesting, but I have most symptoms well under control, including fatigue, my quality of life is excellent. But no-one mentions breathlessness, it is my overriding symptom now, worse in hot, humid weather. I walk up hills, walk an hour every day, but the slightest incline
lucieboo
in
MPN Voice
9 years ago
Hello Again
I take aspirin and
hydroxycarbamide
11 per week . I go to Hinchinbrooke Hospital in Huntingdon and they're very good although I find the McMillan centre a bit of a gentle reminder . I go there every 3 months but I find I get depressed after every visit for about a week even if my bloods are ok .
I take aspirin and
hydroxycarbamide
11 per week . I go to Hinchinbrooke Hospital in Huntingdon and they're very good although I find the McMillan centre a bit of a gentle reminder . I go there every 3 months but I find I get depressed after every visit for about a week even if my bloods are ok .
Helen1952
in
MPN Voice
9 years ago
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