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Experiences with
Hydroxycarbamide
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Hydroxyurea and Shingles
Well I got an answer from my haematologist saying that I did well stopping the pills during therapy and I must start again 10 days after ending the Zovirax (antiviral ) therapy. But my advice to all is do the vaccine! It is a terrible, disabling, painful condition that comes out of the blue! I know
Well I got an answer from my haematologist saying that I did well stopping the pills during therapy and I must start again 10 days after ending the Zovirax (antiviral ) therapy. But my advice to all is do the vaccine! It is a terrible, disabling, painful condition that comes out of the blue! I know
Kelly2
in
MPN Voice
1 year ago
PV and shingles
Hi. I am on Hydroxyurea unfortunately, since a year ago, one capsule, although I certainly need a second one with my platelets nearing 750. It lowers my immune system, years ago it did the same and I stopped it then. After a terrible cold with persistent cough this winter, that lasted one month, now
Hi. I am on Hydroxyurea unfortunately, since a year ago, one capsule, although I certainly need a second one with my platelets nearing 750. It lowers my immune system, years ago it did the same and I stopped it then. After a terrible cold with persistent cough this winter, that lasted one month, now
Kelly2
in
MPN Voice
1 year ago
Hydroxycarbamide long term
Hi I have taken
Hydroxycarbamide
for 16 years. I started very soon after being diagnosed with PV at age 51 and take 1000mgs per day. My blood results have remained very stable, only had one rise in my platelet levels when I had a chest infection about 5 years ago.
Hi I have taken
Hydroxycarbamide
for 16 years. I started very soon after being diagnosed with PV at age 51 and take 1000mgs per day. My blood results have remained very stable, only had one rise in my platelet levels when I had a chest infection about 5 years ago.
Wesleygrange2a
in
MPN Voice
2 years ago
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Hydroxy and hoarseness
I suffer from Jak2 ET and have been on 500 mg
Hydroxycarbamide
daily since May 2021 which I seem to tolerate pretty well apart from extreme tiredness. In the last 2 - 3 months I have suffered morning hoarseness and some difficulty swallowing dry crumbly food.
I suffer from Jak2 ET and have been on 500 mg
Hydroxycarbamide
daily since May 2021 which I seem to tolerate pretty well apart from extreme tiredness. In the last 2 - 3 months I have suffered morning hoarseness and some difficulty swallowing dry crumbly food.
Jelbea
in
MPN Voice
2 years ago
Change of medicatuon
I was diagnosed with ET about 6 years ago and I've been taking
Hydroxycarbamide
since then, which has more or less kept my platelets within reasonable limits. However the unwelcome side effects are that I've lost most of my hair and I regularly get painful mouth ulcers.
I was diagnosed with ET about 6 years ago and I've been taking
Hydroxycarbamide
since then, which has more or less kept my platelets within reasonable limits. However the unwelcome side effects are that I've lost most of my hair and I regularly get painful mouth ulcers.
Sivasi
in
MPN Voice
2 years ago
Weight gain on Hydroxycarbamide
Greeting all, I'm 70 and had my first colonoscopy last week. It revealed a redundant/tortuous colon with significant looping, but no polyps. It was a difficult procedure and took close to an hour according to the report. I'm happy I felt nothing. I now have a better understanding as to a possible
Greeting all, I'm 70 and had my first colonoscopy last week. It revealed a redundant/tortuous colon with significant looping, but no polyps. It was a difficult procedure and took close to an hour according to the report. I'm happy I felt nothing. I now have a better understanding as to a possible
Hidden
in
MPN Voice
2 years ago
Shocking Price of Jakafi
So I am in the USA. I have ET diagnosed in 2018. Have taken Hydroxyurea since then. 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
So I am in the USA. I have ET diagnosed in 2018. Have taken Hydroxyurea since then. 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
dogsandhorses
in
MPN Voice
1 year ago
Abbas Weighs Options in Patient With JAK2-Mutated Polycythemia Vera
During a Targeted Oncology™ Case-Based Roundtable™ event, Jonathan Abbas, MD, discussed data on therapies for a patient with polycythemia vera who did not adequately respond to hydroxyurea. https://www.targetedonc.com/view/abbas-weighs-options-in-patient-with-jak2-mutated-polycythemia-vera
During a Targeted Oncology™ Case-Based Roundtable™ event, Jonathan Abbas, MD, discussed data on therapies for a patient with polycythemia vera who did not adequately respond to hydroxyurea. https://www.targetedonc.com/view/abbas-weighs-options-in-patient-with-jak2-mutated-polycythemia-vera
Manouche
in
MPN Voice
1 year ago
Really??: Pruritus May Mark Severe Symptomology in Myeloproliferative Neoplasms"- From "Hematology Advisor"- Some surprising findings...
In myeloproliferative neoplasms (MPNs), patients reporting pruritus had more symptoms, greater symptoms severity, and were more likely to experience disease evolution, according to results of a questionnaire-based study published in Journal of the European Academy of Dermatology and Venerology[i]. [The
In myeloproliferative neoplasms (MPNs), patients reporting pruritus had more symptoms, greater symptoms severity, and were more likely to experience disease evolution, according to results of a questionnaire-based study published in Journal of the European Academy of Dermatology and Venerology[i]. [The
PhysAssist
in
MPN Voice
1 year ago
positive Covid
Did you continue
hydroxycarbamide
? Thanks phil
Did you continue
hydroxycarbamide
? Thanks phil
PhilReade
in
MPN Voice
2 years ago
Besremi Side Effects
Hello, I would like to hear from anyone who has experience with Besremi. After 9 years on Hydroxyurea, it stopped working for me. I now have some scarring in the bone marrow, as per biopsy. I am a 60 year old female, and now on Besremi since February 1, 2023 , about 10 weeks. However, two weeks ago
Hello, I would like to hear from anyone who has experience with Besremi. After 9 years on Hydroxyurea, it stopped working for me. I now have some scarring in the bone marrow, as per biopsy. I am a 60 year old female, and now on Besremi since February 1, 2023 , about 10 weeks. However, two weeks ago
Artelu
in
MPN Voice
1 year ago
Hydroxyurea
I was finally diagnosed after asking my dr‘s why my platelets stayed so high. Finally a new internal medicine doc sent me to a hemotologist/oncologist. +JAK2. I am taking my first Hydroxyurea capsule tonight. Does any thing happen right away? Thanks
I was finally diagnosed after asking my dr‘s why my platelets stayed so high. Finally a new internal medicine doc sent me to a hemotologist/oncologist. +JAK2. I am taking my first Hydroxyurea capsule tonight. Does any thing happen right away? Thanks
Plate
in
MPN Voice
1 year ago
Introduction and question
Hello everyone. My name is Tiffany. I've been reading through some of the posts relevant to my interests but haven't had a need to post myself until now. My mother was diagnosed with polycythemia (follow-up tests show she does have JAK2 mutation) this past August, right around her 74th birthday
Hello everyone. My name is Tiffany. I've been reading through some of the posts relevant to my interests but haven't had a need to post myself until now. My mother was diagnosed with polycythemia (follow-up tests show she does have JAK2 mutation) this past August, right around her 74th birthday
onlineallthetime
in
MPN Voice
1 year ago
Changing from Hydroxycarbamide to Jakavi
I am in UK and have had Primary MF for 8 years and have been taking Hydroxy all that time. Main symptom for me is high fatigue.On pretty much Maximum dose and platelets still rising so my Consultant is looking to change my treatment to Jakavi. Be grateful for any advice on any problems with this change
I am in UK and have had Primary MF for 8 years and have been taking Hydroxy all that time. Main symptom for me is high fatigue.On pretty much Maximum dose and platelets still rising so my Consultant is looking to change my treatment to Jakavi. Be grateful for any advice on any problems with this change
the_black_pig
in
MPN Voice
2 years ago
HU to Peg Transition Problems -
Hello I am asking for help with difficulties I am having transitioning from hydroxyurea to Pegasys. I am 58, male, CalR-ET, diagnosed in 2008, started HU in 2011. After about 9 years stable on HU (0.75 g/day), with platelets in the range 850-1050 and generally feeling OK, I developed resistance to
Hello I am asking for help with difficulties I am having transitioning from hydroxyurea to Pegasys. I am 58, male, CalR-ET, diagnosed in 2008, started HU in 2011. After about 9 years stable on HU (0.75 g/day), with platelets in the range 850-1050 and generally feeling OK, I developed resistance to
LongETinUS
in
MPN Voice
1 year ago
dry hair
don’t know if this helps anyone lots of ladies asked about hair going very dry and brittle especially on
hydroxycarbamide
I have found a simple solution my hair is very glossy and very good condition,put a teaspoon of olive oil in a dish ,a teaspoon of argon oil and a teaspoon of aloe Vera gel the sort
don’t know if this helps anyone lots of ladies asked about hair going very dry and brittle especially on
hydroxycarbamide
I have found a simple solution my hair is very glossy and very good condition,put a teaspoon of olive oil in a dish ,a teaspoon of argon oil and a teaspoon of aloe Vera gel the sort
ChillyAsh34
in
MPN Voice
2 years ago
Update
I look back fondly on the days when I was only worried about having n MPN. In the past few weeks I developed a blood clot. That has led to initiation of hydroxyurea. Fortunately, I am tolerating that well and platelets are starting to come down. Then I asked that intermittent pain on my left side be
I look back fondly on the days when I was only worried about having n MPN. In the past few weeks I developed a blood clot. That has led to initiation of hydroxyurea. Fortunately, I am tolerating that well and platelets are starting to come down. Then I asked that intermittent pain on my left side be
Mtnlife
in
MPN Voice
1 year ago
CALR ET and hydroxyurea
Had my quarterly hemo visit today, bloods overall were good but platelets are just under 1.2M. My new hematologist at MD here in Houston is starting me on hydroxyurea and I am a little nervous about it. He expressed that interferon is an option down the line but wanted to start here because he wants
Had my quarterly hemo visit today, bloods overall were good but platelets are just under 1.2M. My new hematologist at MD here in Houston is starting me on hydroxyurea and I am a little nervous about it. He expressed that interferon is an option down the line but wanted to start here because he wants
dbus1417
in
MPN Voice
1 year ago
Ramipril
Hello I wondered if anyone takes Ramipril alongside
Hydroxycarbamide
. Thank you
Hello I wondered if anyone takes Ramipril alongside
Hydroxycarbamide
. Thank you
Juliet46
in
MPN Voice
2 years ago
Redundant colon anyone?
Two years ago I started my
hydroxycarbamide
regimen for ET and at the time I was a sveldt 54 kg. Now 2 years down the track not only have a added 5 kg to that number, but have adopted a 'balloon' belly, which is uncomfortably bloated. Thankfully there is no pain.
Two years ago I started my
hydroxycarbamide
regimen for ET and at the time I was a sveldt 54 kg. Now 2 years down the track not only have a added 5 kg to that number, but have adopted a 'balloon' belly, which is uncomfortably bloated. Thankfully there is no pain.
Hidden
in
MPN Voice
2 years ago
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