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Advice for Patients with Myeloproliferative Neoplasms - 19th March 2020
additional illnesses such as heart disease, high blood pressure or diabetes, are considered more vulnerable and should follow the government’s guidelines for vulnerable individuals (see link above). 3.Patients under 70 years of age who are on medications to control their blood count or their MPN like
Hydroxycarbamide
additional illnesses such as heart disease, high blood pressure or diabetes, are considered more vulnerable and should follow the government’s guidelines for vulnerable individuals (see link above). 3.Patients under 70 years of age who are on medications to control their blood count or their MPN like
Hydroxycarbamide
Mazcd
MPNVoice
in
MPN Voice
4 years ago
Insomnia
I would like to know if Hemp tincture taken for insomnia will interfere with Hydroxyurea 500mg & Apixaban 2.5mg? Thank you
I would like to know if Hemp tincture taken for insomnia will interfere with Hydroxyurea 500mg & Apixaban 2.5mg? Thank you
Dreamcatcher77
in
AF Association
4 years ago
Confirmation of Sarcoidosis
I am taking Prednisone and
Hydroxycarbamide
. However over the past 18 months I have developed breathing problems. CT scan shows inflammation, red blotches on my skin, severe aching joints and fatigue and many other unexplained symptoms. GP considers me a mystery patient.
I am taking Prednisone and
Hydroxycarbamide
. However over the past 18 months I have developed breathing problems. CT scan shows inflammation, red blotches on my skin, severe aching joints and fatigue and many other unexplained symptoms. GP considers me a mystery patient.
Heather270240
in
SarcoidosisUK
5 years ago
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Resisting chemotherapy
Platelets rose to 920 so decided if still up a month later would take
hydroxycarbamide
BUT down to 760 ! A month later up to 820 . Now feeling disheartened tired of trying Taking CBD OIL high dose. Curcummin high dose Vit d. Rishi mushroom capsules Seeing Ayurvedic practioner .
Platelets rose to 920 so decided if still up a month later would take
hydroxycarbamide
BUT down to 760 ! A month later up to 820 . Now feeling disheartened tired of trying Taking CBD OIL high dose. Curcummin high dose Vit d. Rishi mushroom capsules Seeing Ayurvedic practioner .
Smomo
in
MPN Voice
5 years ago
It's been a long time......
Good Morning, My name is Penny, I will be 60 in march, and I am from Texas. I came across this forum about 4 yrs ago, but did not for some reason have the guts to write. Now Im back because as I get older and am still trying to deal with essential thrombocytosis....I find myself needing to find others
Good Morning, My name is Penny, I will be 60 in march, and I am from Texas. I came across this forum about 4 yrs ago, but did not for some reason have the guts to write. Now Im back because as I get older and am still trying to deal with essential thrombocytosis....I find myself needing to find others
sugarbear56
in
MPN Voice
4 years ago
Continual nail bed infection and now, cellulitis. All In same foot!?
I have ET and take 500/1000mg
hydroxycarbamide
alt/daily. Also aspirin 75. Current platelet counts hover at 350-450 but, red cells are down to approx 3.1 47yrs old, active 74kg. Male.
I have ET and take 500/1000mg
hydroxycarbamide
alt/daily. Also aspirin 75. Current platelet counts hover at 350-450 but, red cells are down to approx 3.1 47yrs old, active 74kg. Male.
WoodcutterET
in
MPN Voice
5 years ago
ET Medication
Hi all . I have started taking Hydroxyurea for the past 10 days. I was ok till 2 days back. I have developed a purple colour skin patch in my hand and legs just like the one you get when you get hurt.I am also feeling little feverish. My doctor has messaged me to stop the medicine and meet him. Just
Hi all . I have started taking Hydroxyurea for the past 10 days. I was ok till 2 days back. I have developed a purple colour skin patch in my hand and legs just like the one you get when you get hurt.I am also feeling little feverish. My doctor has messaged me to stop the medicine and meet him. Just
Orangemusic
in
MPN Voice
4 years ago
COVID-19 Outbreak: Advice for Patients with Myeloproliferative Neoplasms (MPNs) 30th March 2020
Patients under 70 who are on medications to control their blood count or their MPN, for example
Hydroxycarbamide
, Interferon, Anagrelide or Busulfan are in a group where the situation is unclear.
Patients under 70 who are on medications to control their blood count or their MPN, for example
Hydroxycarbamide
, Interferon, Anagrelide or Busulfan are in a group where the situation is unclear.
Mazcd
MPNVoice
in
MPN Voice
4 years ago
Thoughts &ideas on fatigue
I have ET. Diagnosed 12 months ago. Platelets around 600. On Hydroxyurea (HU). Male 67 years old. Fatigue has been a real issue. I am a high school math teacher, and shortly after diagnosis and starting on HU I needed to take a nap in my car at lunch. It got worse and I moved to half-time. Concerned
I have ET. Diagnosed 12 months ago. Platelets around 600. On Hydroxyurea (HU). Male 67 years old. Fatigue has been a real issue. I am a high school math teacher, and shortly after diagnosis and starting on HU I needed to take a nap in my car at lunch. It got worse and I moved to half-time. Concerned
PMac314
in
Leukaemia Support
4 years ago
New treatment options
https://www.targetedonc.com/news/expert-highlights-benefits-of-fedratinib-in-subgroup-of-patients-with-myelofibrosis Mesa: It’s an exciting time in MPNs without a doubt. I would break it down into 2 advances. The first is in patients with ET and PV. At this meeting, there continues to be further updates
https://www.targetedonc.com/news/expert-highlights-benefits-of-fedratinib-in-subgroup-of-patients-with-myelofibrosis Mesa: It’s an exciting time in MPNs without a doubt. I would break it down into 2 advances. The first is in patients with ET and PV. At this meeting, there continues to be further updates
Paul123456
in
MPN Voice
4 years ago
Laser hair removal
Does anyone know if it's a risk to have laser hair removal while taking
Hydroxycarbamide
, for ET? Thanks
Does anyone know if it's a risk to have laser hair removal while taking
Hydroxycarbamide
, for ET? Thanks
Kesslerkev2711
in
MPN Voice
5 years ago
PV Jak2+ Just beginning Hydroxycarbamide
After many years of saying no - I've given in and start
Hydroxycarbamide
today. My poor veins have had enough, and venesection, even with the vascular scan team hunting for a decent vein became impossible. The doseage I've been given is 500mg seven days a week.
After many years of saying no - I've given in and start
Hydroxycarbamide
today. My poor veins have had enough, and venesection, even with the vascular scan team hunting for a decent vein became impossible. The doseage I've been given is 500mg seven days a week.
Kari1961
in
MPN Voice
5 years ago
SMC decision regarding Ruxolitinib (Jakavi) for PV patients in Scotland
https://www.scottishmedicines.org.uk/media/4949/decision-explained-ruxolitinib-jakavi.pdf This is very exciting news for PV patients living in Scotland, who cannot be treated with
Hydroxycarbamide
or where it has not worked.
What does the SMC’s decision mean for PV patients?
https://www.scottishmedicines.org.uk/media/4949/decision-explained-ruxolitinib-jakavi.pdf This is very exciting news for PV patients living in Scotland, who cannot be treated with
Hydroxycarbamide
or where it has not worked.
What does the SMC’s decision mean for PV patients?
Mazcd
MPNVoice
in
MPN Voice
5 years ago
ET update
Some say the
hydroxycarbamide
is making me tired, another says it’s the condition. Does anyone know?? The consultant yesterday said I’d probably have the fatigue forever but to live life as normal. Easy to say! Still the chemo is working and I’m pleased.
Some say the
hydroxycarbamide
is making me tired, another says it’s the condition. Does anyone know?? The consultant yesterday said I’d probably have the fatigue forever but to live life as normal. Easy to say! Still the chemo is working and I’m pleased.
LightOfErendil
in
Leukaemia Support
5 years ago
Et progression to mf and bone marrow biopsy.
Been on
hydroxycarbamide
and anagrelide ,but transferring to interferon. Diagnosed with mf this week and very scared. Need fortnightly transfusions and bone marrow biopsy. Any support would be gratefully welcome. Also am self employed and concerned re finances. Sue x
Been on
hydroxycarbamide
and anagrelide ,but transferring to interferon. Diagnosed with mf this week and very scared. Need fortnightly transfusions and bone marrow biopsy. Any support would be gratefully welcome. Also am self employed and concerned re finances. Sue x
soomoo
in
MPN Voice
5 years ago
Update - PV + NF1-Brain Tumor + Even more excitement!
Hoping the new year finds you all well and looking forward to happiness and success in the coming year. Decided it was time to post an update on the ongoing saga of managing PV along with various and sundry other issues. History - The current saga starts back in January 2018 when I had a god-awful
Hoping the new year finds you all well and looking forward to happiness and success in the coming year. Decided it was time to post an update on the ongoing saga of managing PV along with various and sundry other issues. History - The current saga starts back in January 2018 when I had a god-awful
hunter5582
in
MPN Voice
5 years ago
Haemo visit update.
So......back on the
Hydroxycarbamide
with Lanzoprazole to counteract acid from the Aspirin.
So......back on the
Hydroxycarbamide
with Lanzoprazole to counteract acid from the Aspirin.
azaelea
in
MPN Voice
5 years ago
How to be free from yellow eyes
My son is a sickle cell patient and has yellow eyes, how can he be free from it.he has been on hydroxyurea for 5yrs
My son is a sickle cell patient and has yellow eyes, how can he be free from it.he has been on hydroxyurea for 5yrs
Faith3ful
in
Sickle Cell Society
5 years ago
Christmas message 2019 from the team at MPN Voice
The study has received funding from MPN Voice, you can support the study with a donation via the JustGiving page https://www.justgiving.com/campaign/charity-mosaicc-study Mithridate, a phase III, randomised, open-label, Multicenter International sTudy comparing ruxolitinib with either
HydRoxycarbamIDe
The study has received funding from MPN Voice, you can support the study with a donation via the JustGiving page https://www.justgiving.com/campaign/charity-mosaicc-study Mithridate, a phase III, randomised, open-label, Multicenter International sTudy comparing ruxolitinib with either
HydRoxycarbamIDe
Mazcd
MPNVoice
in
MPN Voice
5 years ago
Life with ET
I am the person flying through the air. At 39 I discovered I had ET (CALR). I also started Brazilian Jiu Jitsu. Almost 4 years later I still have ET and I take 2 pills of Hydroxyurea 5 days per week. Today I received my purple belt. The test was two hours of nonstop movement and grappling. My point
I am the person flying through the air. At 39 I discovered I had ET (CALR). I also started Brazilian Jiu Jitsu. Almost 4 years later I still have ET and I take 2 pills of Hydroxyurea 5 days per week. Today I received my purple belt. The test was two hours of nonstop movement and grappling. My point
MJL1977
in
MPN Voice
5 years ago
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