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Experiences with
Hydroxycarbamide
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Long Term INF Results
I've posted on other threads about INF treatments. I decided to start a new post since I just came across a most relevant study that should wake up our doctors if they are paying attention. In any other cancer I think this result would be called revolutionary, but since ours is such a slow motion and
I've posted on other threads about INF treatments. I decided to start a new post since I just came across a most relevant study that should wake up our doctors if they are paying attention. In any other cancer I think this result would be called revolutionary, but since ours is such a slow motion and
EPguy
in
MPN Voice
3 years ago
1st CBC Post Switch to Peg
As promised, providing my first CBC results since switch to Peg. As background, I am 52yo, ET Jak2+. Started on HU back in March - eventually got to 1,500mg/day (21 pills/week) - significant side effects decided to try and switch to Peg. Switched one month ago - on 90mg/week with 1,000mg/day (2 pills
As promised, providing my first CBC results since switch to Peg. As background, I am 52yo, ET Jak2+. Started on HU back in March - eventually got to 1,500mg/day (21 pills/week) - significant side effects decided to try and switch to Peg. Switched one month ago - on 90mg/week with 1,000mg/day (2 pills
Solyesh
in
MPN Voice
3 years ago
Pain and fatigue
I am taking
hydroxycarbamide
and apixaban blood thinner due to portal vein thrombosis. I am worn out with being pushed backwards and forwards from haematologist to GP. I am at a point where i feel i need to finish work due to the pain and fatigue.
I am taking
hydroxycarbamide
and apixaban blood thinner due to portal vein thrombosis. I am worn out with being pushed backwards and forwards from haematologist to GP. I am at a point where i feel i need to finish work due to the pain and fatigue.
poly2
in
MPN Voice
3 years ago
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Saxenda weight loss medication
I have myelofibrosis and take
hydroxycarbamide
. Can anyone tell me if there are any reasons why i should not have Saxenda which is a medicine to help you loose weight. Its a GLP1 hormone ( i understand) can anyone point me in the right direction. There are no drug interactions
I have myelofibrosis and take
hydroxycarbamide
. Can anyone tell me if there are any reasons why i should not have Saxenda which is a medicine to help you loose weight. Its a GLP1 hormone ( i understand) can anyone point me in the right direction. There are no drug interactions
Ginny70
in
MPN Voice
3 years ago
The eyes have it?
I am only 71 but feel 41đ€Ș and there was me thinking it was to do with my ET and
Hydroxycarbamide
. đ€Šââïž Its been going on for a number of years this blurred vision some days are OK others blooming awful, also in 2019 had laser to put a hole in both eyes to relieve the pressure which they said had
I am only 71 but feel 41đ€Ș and there was me thinking it was to do with my ET and
Hydroxycarbamide
. đ€Šââïž Its been going on for a number of years this blurred vision some days are OK others blooming awful, also in 2019 had laser to put a hole in both eyes to relieve the pressure which they said had
Superwoman
in
MPN Voice
3 years ago
Confusion over vaccine efficacy for MPNS
I have lived with ET for over 25 years and have lived a full life with very little in my life having been impacted, save the 3 monthly monitoring and daily dose of aspirin and 500 mg of
Hydroxycarbamide
. I am fully vaccinated. But am I safe?
I have lived with ET for over 25 years and have lived a full life with very little in my life having been impacted, save the 3 monthly monitoring and daily dose of aspirin and 500 mg of
Hydroxycarbamide
. I am fully vaccinated. But am I safe?
amarylis
in
MPN Voice
3 years ago
ET - how many of you have this condition and then have it develop into MF or another condition
After a few months, we changed it over to
hydroxycarbamide
as my symptoms' with interferon weren't great.
After a few months, we changed it over to
hydroxycarbamide
as my symptoms' with interferon weren't great.
vickivicki
in
MPN Voice
3 years ago
ET
On
hydroxycarbamide
Anyone else have spells like this? Will just rest today and hope it passes quickly.
On
hydroxycarbamide
Anyone else have spells like this? Will just rest today and hope it passes quickly.
HazeBlue
in
MPN Voice
3 years ago
Hydroxyurea hair loss
Who else experienced hair loss have ET?
Who else experienced hair loss have ET?
shiela23
in
MPN Voice
3 years ago
Afib
Have others with ET had AFib? I havenât noticed any posts about it. I am now taking Eliquis and 75 mg of Metropolol. I am waiting to see an electrophysiologist to have an ablation. Canât wait as AFib is no fun and the drugs for it on top of Hydroxyurea make me feel like a zombie!! As always thank
Have others with ET had AFib? I havenât noticed any posts about it. I am now taking Eliquis and 75 mg of Metropolol. I am waiting to see an electrophysiologist to have an ablation. Canât wait as AFib is no fun and the drugs for it on top of Hydroxyurea make me feel like a zombie!! As always thank
Cookiebaker
in
MPN Voice
3 years ago
Long term Hydroxycarbamide treatment
I am now 58, I read with interest that others are not started on
Hydroxycarbamide
until age 60. I do wonder what the long term effects of being on
Hydroxycarbamide
will result. I have had a few episodes of skin cancer and over the years some stomach problems.
I am now 58, I read with interest that others are not started on
Hydroxycarbamide
until age 60. I do wonder what the long term effects of being on
Hydroxycarbamide
will result. I have had a few episodes of skin cancer and over the years some stomach problems.
Bobthecob
in
MPN Voice
3 years ago
Hydroxyurea
whoâs the one treated well with hydroxy??? Doesnât this medication lots of side effects or effective treatment for ET??? Let me know please thank you so muchâŠ
whoâs the one treated well with hydroxy??? Doesnât this medication lots of side effects or effective treatment for ET??? Let me know please thank you so muchâŠ
shiela23
in
MPN Voice
3 years ago
Antibody test
Hi, all. So my partner is going for an antibody test today to see if he still has immunity from the vaccine. Iâve tried to google to find out how reliable these tests are. We were supposed to go to New York in a few weeks for the birth of his 5th grandchild, but he just canceled the trip because we are
Hi, all. So my partner is going for an antibody test today to see if he still has immunity from the vaccine. Iâve tried to google to find out how reliable these tests are. We were supposed to go to New York in a few weeks for the birth of his 5th grandchild, but he just canceled the trip because we are
Cja1956
in
MPN Voice
3 years ago
Hydroxycarbamide and anaemia
I was prescribed
hydroxycarbamide
last November as my platelets were 870.They have slowly come down but at the moment are staying at 510. The haematologist says she wants them in the 400 s so has upped my dose.
I was prescribed
hydroxycarbamide
last November as my platelets were 870.They have slowly come down but at the moment are staying at 510. The haematologist says she wants them in the 400 s so has upped my dose.
Hidden
in
MPN Voice
3 years ago
MPN-U
Hi everyone I am a 72 year old female and a new member. I was diagnosed one year ago with ET by my hematologist , but after consulting with an MPN specialist my diagnosis was changed to PV. Now it seems I don't fit exactly into that category so I am MPN-U (unclassified). I've been on Hydroxyurea 500
Hi everyone I am a 72 year old female and a new member. I was diagnosed one year ago with ET by my hematologist , but after consulting with an MPN specialist my diagnosis was changed to PV. Now it seems I don't fit exactly into that category so I am MPN-U (unclassified). I've been on Hydroxyurea 500
violetta115
in
MPN Voice
3 years ago
Interferon journey started with ET JAK+ at platelets counts 550
I start interferon journey yesterday after taking 4 months of hydroxyurea. My initial blood platelets was as high as ~950 in April, then gradually decreases to ~550 till yesterday when I switched to interferon. Although I don't have any severe side-effects on HU except I felt soar knee, I decided to
I start interferon journey yesterday after taking 4 months of hydroxyurea. My initial blood platelets was as high as ~950 in April, then gradually decreases to ~550 till yesterday when I switched to interferon. Although I don't have any severe side-effects on HU except I felt soar knee, I decided to
Sam2022
in
MPN Voice
3 years ago
Curly hair side effect?
I started taking hydroxyurea about 20 mo ago. Is it possible to have developed somewhat curly hair as a âside effectâ? Itâs wonderful! Ive never had curly hair before, Iâm 70yo. This med is the only change I can attribute it to.
I started taking hydroxyurea about 20 mo ago. Is it possible to have developed somewhat curly hair as a âside effectâ? Itâs wonderful! Ive never had curly hair before, Iâm 70yo. This med is the only change I can attribute it to.
Fi82
in
MPN Voice
3 years ago
RUXOLITINIB
Previously I was on
Hydroxycarbamide
which my body rejected and caused breathing problems. All went well for the first week on Ruxotilib but 4 days ago I started feeling very unwell lightheadedness, nauseous, bloating all the side effects which showed on the information given with the medication.
Previously I was on
Hydroxycarbamide
which my body rejected and caused breathing problems. All went well for the first week on Ruxotilib but 4 days ago I started feeling very unwell lightheadedness, nauseous, bloating all the side effects which showed on the information given with the medication.
Heather270240
in
MPN Voice
3 years ago
Hydroxyurea contribute to Osteoporosis?
Has anyone been told that taking hydroxyurea can contribute to osteoporosis
Has anyone been told that taking hydroxyurea can contribute to osteoporosis
DH65
in
MPN Voice
3 years ago
GCA and Polycythemia Vera
At present on 11.5. 4 years ago I developed PV a rare blood condition and put on
Hydroxycarbamide
1000mg a day. All went well untill I had a flare in my GCA and Pred increased to 20.
At present on 11.5. 4 years ago I developed PV a rare blood condition and put on
Hydroxycarbamide
1000mg a day. All went well untill I had a flare in my GCA and Pred increased to 20.
Heather270240
in
PMRGCAuk
3 years ago
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