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Experiences with
Hydrea
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Lots of bad stuff happening, what to do?
It's hideous and sore but my reason for jumping on was that I'm wanting to get off of the
Hydrea
because I'm certain in my mind that it started my skin cancer & I'm afraid of melanoma or even another basal cell!!
It's hideous and sore but my reason for jumping on was that I'm wanting to get off of the
Hydrea
because I'm certain in my mind that it started my skin cancer & I'm afraid of melanoma or even another basal cell!!
Androg
in
MPN Voice
7 months ago
Some clarification on just how much cover I need from the sun please?
I just wondered if my skin is more vulnerable to burning now I’m on
Hydrea
or is the importance on just not getting sunburned where I will increase my risk of skin cancer with
Hydrea
? I know burning will increase my risk of skin cancer.
I just wondered if my skin is more vulnerable to burning now I’m on
Hydrea
or is the importance on just not getting sunburned where I will increase my risk of skin cancer with
Hydrea
? I know burning will increase my risk of skin cancer.
Pachena
in
MPN Voice
1 year ago
Low Platelets Help
I’m taking 105mcg of Pegasys with 1500 mgs of
Hydrea
per week for PV. I’m concerned that my platelets are falling lower every month. I just dropped to Under 100. I’m wondering if anyone else has experienced this? Thanks
I’m taking 105mcg of Pegasys with 1500 mgs of
Hydrea
per week for PV. I’m concerned that my platelets are falling lower every month. I just dropped to Under 100. I’m wondering if anyone else has experienced this? Thanks
russkatt
in
MPN Voice
22 days ago
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can’t loose any weight!
I have gained 5 lbs since on
Hydrea
the past 2 years and no matter what diet plan I have tried the weight will not come off!!!!!!! I have PV Has anyone experienced this? Thank you
I have gained 5 lbs since on
Hydrea
the past 2 years and no matter what diet plan I have tried the weight will not come off!!!!!!! I have PV Has anyone experienced this? Thank you
Sunnylesser
in
MPN Voice
11 months ago
Ruxolitinib plus Hydrea
Hi everyone I was supposed to start on IFN but my heamatologist is asking other consultants if Ruxolitinib and
hydrea
can be combined. Was on
hydrea
for Sixteen years but stopped controlling my platelets. Now on Ruxolitinib but can’t tolerate a high dose. She thinking lower dose both.
Hi everyone I was supposed to start on IFN but my heamatologist is asking other consultants if Ruxolitinib and
hydrea
can be combined. Was on
hydrea
for Sixteen years but stopped controlling my platelets. Now on Ruxolitinib but can’t tolerate a high dose. She thinking lower dose both.
Mudmaker
in
MPN Voice
1 year ago
Sunshine & Skin Rash
I will however be extra careful in the sunshine in future as this has made me feel much more aware of my skin sensitivity and vulnerability since having ET and taking
Hydrea
I wish you all the very best X
I will however be extra careful in the sunshine in future as this has made me feel much more aware of my skin sensitivity and vulnerability since having ET and taking
Hydrea
I wish you all the very best X
Yoganana1
in
MPN Voice
11 months ago
Started Besremi
The hematologist wanted me to start
Hydrea
, but because of side effects I declined and started phlebotomies only. I am lucky to live near a major academic center where I started visiting a MPN specialist and in 2022 she wanted me to start Besremi.
The hematologist wanted me to start
Hydrea
, but because of side effects I declined and started phlebotomies only. I am lucky to live near a major academic center where I started visiting a MPN specialist and in 2022 she wanted me to start Besremi.
Pogm
in
MPN Voice
10 months ago
Hydrea hair
Hi folks, I've been on 500 mg of
Hydrea
daily since 1st March. Apart from the tiredness I've noticed that my hair doesn't feel like my normal hair. I never had fabulous tumbling locks but my hair feels dull, fuzzy and flat. My hairdresser suspects it's the drug.
Hi folks, I've been on 500 mg of
Hydrea
daily since 1st March. Apart from the tiredness I've noticed that my hair doesn't feel like my normal hair. I never had fabulous tumbling locks but my hair feels dull, fuzzy and flat. My hairdresser suspects it's the drug.
Janglo
in
MPN Voice
1 year ago
New ET diagnosis
how they have felt on taking
Hydrea
.. I know it’s an individual body response too. I know it’s vanity too… but hair loss? Skin and nail? mall this freaks me out. Also am due to fly to UK mid August.. feel a little anxious.
how they have felt on taking
Hydrea
.. I know it’s an individual body response too. I know it’s vanity too… but hair loss? Skin and nail? mall this freaks me out. Also am due to fly to UK mid August.. feel a little anxious.
Stargaye
in
MPN Voice
10 months ago
Besremi temperature problem
I was diagnosed with PV in August 2021 and was on
Hydrea
for about a year+, then switched to Besremi December 29, 2022, currently at 150 mcg. It's going well, but my HCT and Platelets are still trending up somewhat, have periodic venesections, last one in June.
I was diagnosed with PV in August 2021 and was on
Hydrea
for about a year+, then switched to Besremi December 29, 2022, currently at 150 mcg. It's going well, but my HCT and Platelets are still trending up somewhat, have periodic venesections, last one in June.
C_Anne_Orange
in
MPN Voice
9 months ago
Hydroxycarbamide and difficulty swallowing
My prescription is for the generic hydroxy but on one occasion I got
Hydrea
which was a smaller, harder capsule and I wondered if this might help as it would probably not melt quite as quickly. Any thoughts would be much appreciated. The Hydroxycarbamide is keeping my blood levels in good order.
My prescription is for the generic hydroxy but on one occasion I got
Hydrea
which was a smaller, harder capsule and I wondered if this might help as it would probably not melt quite as quickly. Any thoughts would be much appreciated. The Hydroxycarbamide is keeping my blood levels in good order.
Jelbea
in
MPN Voice
11 months ago
Bloating relief
I've been on hydroxycarbamide now for 2.5 years and although my platelets are looking good (now on 500mg
hydrea
/day), my belly bloat + few kilos weight gain is an issue.
I've been on hydroxycarbamide now for 2.5 years and although my platelets are looking good (now on 500mg
hydrea
/day), my belly bloat + few kilos weight gain is an issue.
Hidden
in
MPN Voice
1 year ago
The difference between ET and JAK2 ET…?
She is on a high dose of
Hydrea
. I was wondering if there is any difference between the two? JAK2 makes the cells multiply is that right, so wouldn’t there be some sort of multiplication going on with my SIL for her to have the ET? I find the science a bit over my head.
She is on a high dose of
Hydrea
. I was wondering if there is any difference between the two? JAK2 makes the cells multiply is that right, so wouldn’t there be some sort of multiplication going on with my SIL for her to have the ET? I find the science a bit over my head.
Pachena
in
MPN Voice
1 year ago
High Platelets and N-Acetylcysteine trial
In 2019 following one year of
Hydrea
treatment @ 500 mg daily and another 500 mg on M-W-F my platelets went down to 397 from 1 million when diagnosed in 2018. In 2020 platelets were 463, 2021 were 479 and 464, 2022 were 486 and 558 and now in 2023 they are 649.
In 2019 following one year of
Hydrea
treatment @ 500 mg daily and another 500 mg on M-W-F my platelets went down to 397 from 1 million when diagnosed in 2018. In 2020 platelets were 463, 2021 were 479 and 464, 2022 were 486 and 558 and now in 2023 they are 649.
mbr8076
in
MPN Voice
1 year ago
Hydrea VS Jakavi
After 20 years with hudrea the moment has came when jakavi entered my life. Does anyone have experience with jakavi? I would appreciate it if someone could tell me their experience. I could say I'm not happy with it I found the transition very difficult.
After 20 years with hudrea the moment has came when jakavi entered my life. Does anyone have experience with jakavi? I would appreciate it if someone could tell me their experience. I could say I'm not happy with it I found the transition very difficult.
MarPapa
in
MPN Voice
1 year ago
Dosing Jakafi
After 2 years on
Hydrea
for CALR ET, 4 weeks ago I started jakafi 10mg twice a day . Getting cbc every two weeks has shown platelets increasing each time. When I started they were 620ish, 2 weeks later 702, Then yesterday they were 820. Now doc wants me to go to 15mg twice daily.
After 2 years on
Hydrea
for CALR ET, 4 weeks ago I started jakafi 10mg twice a day . Getting cbc every two weeks has shown platelets increasing each time. When I started they were 620ish, 2 weeks later 702, Then yesterday they were 820. Now doc wants me to go to 15mg twice daily.
George1976
in
MPN Voice
1 year ago
Platelets and diet
After a few weeks of receiving weekly vene sections and a couple of months on
hydrea
, my polycythemia vera is coming down. Haemoglobin and hematocrit are within the normal range, but my platelet count has gone up by almost 200 points since last week's count.
After a few weeks of receiving weekly vene sections and a couple of months on
hydrea
, my polycythemia vera is coming down. Haemoglobin and hematocrit are within the normal range, but my platelet count has gone up by almost 200 points since last week's count.
Deya08
in
MPN Voice
1 year ago
Shocking Price of Jakafi
I have been having lots of side effects from
Hydrea
, so my Dr. suggested a possible change to Jakafi. When I called my mail order pharmacy to price it, I was told that for a 90 day supply it would be $20,857, of which I would have to pay 33% or $6,882! How many people can do that?
I have been having lots of side effects from
Hydrea
, so my Dr. suggested a possible change to Jakafi. When I called my mail order pharmacy to price it, I was told that for a 90 day supply it would be $20,857, of which I would have to pay 33% or $6,882! How many people can do that?
dogsandhorses
in
MPN Voice
1 year ago
2 weeks on HU - first spot check 👀
had my first bloods taken since starting
hydrea
two weeks ago. All bloods in normal range and platelets down from 1.2M to 880. So far no side effects and feeling well overall. 🤙🏽 39 yo male CALR type 1 for reference. Question: how long can I expect my numbers to decline at this dose?
had my first bloods taken since starting
hydrea
two weeks ago. All bloods in normal range and platelets down from 1.2M to 880. So far no side effects and feeling well overall. 🤙🏽 39 yo male CALR type 1 for reference. Question: how long can I expect my numbers to decline at this dose?
dbus1417
in
MPN Voice
1 year ago
Gum lesions from Hydrea
I have developed gum lesions from
Hydrea
. They aren't white places, but bright red. My haematologist didn't have anything to offer me on what to do about it. It is also making my gums recede. My dentist didn't have any answers for what to do about it either.
I have developed gum lesions from
Hydrea
. They aren't white places, but bright red. My haematologist didn't have anything to offer me on what to do about it. It is also making my gums recede. My dentist didn't have any answers for what to do about it either.
dogsandhorses
in
MPN Voice
1 year ago
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