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Hydrea
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Bomedemstat trials
I’m terrified of going back on
Hydrea
due to intolerable side effects and my very understanding MPN specialist nurse has been monitoring me. Sadly, my platelets are creeping up , lately to 845 and I’m now wakening during the night with tingling legs and palpitations .
I’m terrified of going back on
Hydrea
due to intolerable side effects and my very understanding MPN specialist nurse has been monitoring me. Sadly, my platelets are creeping up , lately to 845 and I’m now wakening during the night with tingling legs and palpitations .
myllo
in
MPN Voice
11 months ago
Long Term Hydrea patients?
Hi, I'd like to hear from any long term
Hydrea
PV/ET patients out there? I'm 74. I was diagnosed about 7 years ago with Jak2 ET. Refused
Hydrea
and just stayed on daily aspirin. About 18 months ago my diagnosis was changed to PV.
Hi, I'd like to hear from any long term
Hydrea
PV/ET patients out there? I'm 74. I was diagnosed about 7 years ago with Jak2 ET. Refused
Hydrea
and just stayed on daily aspirin. About 18 months ago my diagnosis was changed to PV.
Jamesxyz
in
MPN Voice
2 years ago
Resveratrol and ET
I’m calr positive ET on
Hydrea
which I hate taking for its toxic effect . My haematologist just continues to increase the dose to try to suppress rising platelet count.
I’m calr positive ET on
Hydrea
which I hate taking for its toxic effect . My haematologist just continues to increase the dose to try to suppress rising platelet count.
myllo
in
MPN Voice
2 years ago
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Pegasys Delay
I'm currently taking 1500mg of
Hydrea
and my Hematologist wants me to keep taking it while starting a Pegasys dose of 180mcg. I told him I thought that was too high and prefer to start with 45mcg and work my way up if need be. So I will continue the 3 pills of
Hydrea
with 45mcg of Pegasys.
I'm currently taking 1500mg of
Hydrea
and my Hematologist wants me to keep taking it while starting a Pegasys dose of 180mcg. I told him I thought that was too high and prefer to start with 45mcg and work my way up if need be. So I will continue the 3 pills of
Hydrea
with 45mcg of Pegasys.
Zeppelin11
in
MPN Voice
1 year ago
Another newly diagnosed
In the meantime I've to take 500mg of
Hydrea
daily to get the platelets down. I don't have any of the listed symptoms apart from bruising very easily Now for the questions - How did the consultant know I have an MPN ?
In the meantime I've to take 500mg of
Hydrea
daily to get the platelets down. I don't have any of the listed symptoms apart from bruising very easily Now for the questions - How did the consultant know I have an MPN ?
Janglo
in
MPN Voice
1 year ago
ET and hydrea
I have ET and after 6 years I stopped taking my Hyderabad 1 year ago because they kept increasing my dose and was upsetting my stomach.
I have ET and after 6 years I stopped taking my Hyderabad 1 year ago because they kept increasing my dose and was upsetting my stomach.
Silveryeam2
in
MPN Voice
2 years ago
ocular migraines
I’m on xeralto and
hydrea
one 500 daily. Any help about this? Thanks as always.
I’m on xeralto and
hydrea
one 500 daily. Any help about this? Thanks as always.
Pounds11
in
MPN Voice
1 year ago
Switching to Interferon
Trying to factor in why they continue to go up but I have a feeling the
Hydrea
isn't doing the job anymore, especially with me taking 3 pills a day. I fear the long term side effects of the
Hydrea
and because if this community I'm no longer scared to try Interferon.
Trying to factor in why they continue to go up but I have a feeling the
Hydrea
isn't doing the job anymore, especially with me taking 3 pills a day. I fear the long term side effects of the
Hydrea
and because if this community I'm no longer scared to try Interferon.
Zeppelin11
in
MPN Voice
2 years ago
Precautions while on Hydrea
Anyone heard that our bodily fluids could be carcinogenic to others while on hydroxurea? If so what precautions are you taking? I’m on Hydroxurea for last year and a half for CALR ET. Was on Pegasys for four years prior until it seemed to have either caused or greatly aggravated an intense neuropathy
Anyone heard that our bodily fluids could be carcinogenic to others while on hydroxurea? If so what precautions are you taking? I’m on Hydroxurea for last year and a half for CALR ET. Was on Pegasys for four years prior until it seemed to have either caused or greatly aggravated an intense neuropathy
George1976
in
MPN Voice
2 years ago
Starting Pegasys Friday
The plan is to still take one pill of
Hydrea
a day and start with an interferon dose of 45mcg. I'm staying positive because I'm 38 years old and I think this will benefit me in the long run when it comes to side effects.
The plan is to still take one pill of
Hydrea
a day and start with an interferon dose of 45mcg. I'm staying positive because I'm 38 years old and I think this will benefit me in the long run when it comes to side effects.
Zeppelin11
in
MPN Voice
1 year ago
Hydrea and Platelets
Hi guys, start taking
Hydrea
a month ago, went for blood test, Platelets went up to 1566 when I started the
hydrea
they were 1321.
Hi guys, start taking
Hydrea
a month ago, went for blood test, Platelets went up to 1566 when I started the
hydrea
they were 1321.
georgevanier
in
MPN Voice
2 years ago
raised potassium levels
Been on
Hydrea
500 mg 3 times a week. The last 3 blood tests show my potassium levels creeping up above normal. No changes in my diet. I am on my third blood test in the morning for raised potassium, is this a false reading. I’m ET, Calr and on Aspirin and Interferon
Been on
Hydrea
500 mg 3 times a week. The last 3 blood tests show my potassium levels creeping up above normal. No changes in my diet. I am on my third blood test in the morning for raised potassium, is this a false reading. I’m ET, Calr and on Aspirin and Interferon
Grendall
in
MPN Voice
2 years ago
Pegasys
I have been
Hydrea
, (hydroxicarbomide) and my onc wants me to inject with Peg to get the platelets down. I feel perfect and don't like the idea of injecting this stuff (don't mind at all putting the needle in though) Be interested to know of side effects if anyone can help
I have been
Hydrea
, (hydroxicarbomide) and my onc wants me to inject with Peg to get the platelets down. I feel perfect and don't like the idea of injecting this stuff (don't mind at all putting the needle in though) Be interested to know of side effects if anyone can help
jcowboy
in
MPN Voice
2 years ago
Unbearable itching! Any ideas to calm it down?
He really wants me back on
hydrea
but I couldn’t tolerate it after a year. I’m thinking I need to do something as the platelets are rising! I so don’t want to do
hydrea
! Anyway… it’s so hard to figure it all out. One thing that’s overwhelming at the moment is the itching and stinging!
He really wants me back on
hydrea
but I couldn’t tolerate it after a year. I’m thinking I need to do something as the platelets are rising! I so don’t want to do
hydrea
! Anyway… it’s so hard to figure it all out. One thing that’s overwhelming at the moment is the itching and stinging!
Airslie
in
MPN Voice
2 years ago
Besremi and kidney function
Started taking
Hydrea
right away and last year started pegasys. My counts were well controlled but some side effects. I’ve just started besremi but have been concerned about my kidneys (GFR now 45, creatinine 1.22) Anyone out there in PV world had this issue with besremi?
Started taking
Hydrea
right away and last year started pegasys. My counts were well controlled but some side effects. I’ve just started besremi but have been concerned about my kidneys (GFR now 45, creatinine 1.22) Anyone out there in PV world had this issue with besremi?
P1pp1r
in
MPN Voice
2 years ago
Rux and heartburn
I have been taking Rux for one year, prior to that
Hydrea
for two years, and aspirin for the three years. I have never in my life had heartburn before . It's worse after eating dairy but happens with nearly all food, also have a burning sensation when swallowing hot drinks.
I have been taking Rux for one year, prior to that
Hydrea
for two years, and aspirin for the three years. I have never in my life had heartburn before . It's worse after eating dairy but happens with nearly all food, also have a burning sensation when swallowing hot drinks.
JP1952
in
MPN Voice
2 years ago
Update of Mithradite Trial
The Mithradite trial is a randomised trial of Ruxolitnib against best available therapy which is either
Hydrea
or Interferon. My background is diagnosed with ET three years at age 67 and prescribed
Hydrea
. The
Hydrea
reduced platelets but I was cursed with the unbearable itch.
The Mithradite trial is a randomised trial of Ruxolitnib against best available therapy which is either
Hydrea
or Interferon. My background is diagnosed with ET three years at age 67 and prescribed
Hydrea
. The
Hydrea
reduced platelets but I was cursed with the unbearable itch.
JP1952
in
MPN Voice
2 years ago
Is weight loss even possible?
Apart from the weight struggle, I have no issues with the
hydrea
. Has anyone been successful with a special diet an/or weight loss? Has anyone visited a dietician with good news? Particularly upsetting is the belly bloat (where I believe at least 2-3 kg is hiding 🤪) Keep well everyone...
Apart from the weight struggle, I have no issues with the
hydrea
. Has anyone been successful with a special diet an/or weight loss? Has anyone visited a dietician with good news? Particularly upsetting is the belly bloat (where I believe at least 2-3 kg is hiding 🤪) Keep well everyone...
Hidden
in
MPN Voice
2 years ago
Started Peginterferon!
Started on
Hydrea
but had too many side effects although on a low dose. Now on Peginterferon Alfa2a on a low dose 45 micrograms per week plus baby aspirin. Started well five weeks ago with no side effects but now am suffering from a lot of pain in my arms, back and head and other odd places.
Started on
Hydrea
but had too many side effects although on a low dose. Now on Peginterferon Alfa2a on a low dose 45 micrograms per week plus baby aspirin. Started well five weeks ago with no side effects but now am suffering from a lot of pain in my arms, back and head and other odd places.
Fairbank
in
MPN Voice
2 years ago
82 y/o with PV on Hydrea, having problem with getting good flow of blood on phlebotomy.
Doing well with
Hydrea
. Will discuss further with my hematologist on my visit this month. Any suggestions? Appreciate your input.
Doing well with
Hydrea
. Will discuss further with my hematologist on my visit this month. Any suggestions? Appreciate your input.
singsingsing02
in
MPN Voice
2 years ago
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