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Hydroxycarbamide
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Pneumonia update
Hello, all, as some of you may know, I was hospitalized with pneumonia 2 months ago. A ct scan was performed on my lungs the report stated that I may have pulmonary fibrosis. There are also some other concerns mentioned in the CAT scan so I went to see a pulmonologist the other day to get a second opinion
Hello, all, as some of you may know, I was hospitalized with pneumonia 2 months ago. A ct scan was performed on my lungs the report stated that I may have pulmonary fibrosis. There are also some other concerns mentioned in the CAT scan so I went to see a pulmonologist the other day to get a second opinion
Cja1956
in
MPN Voice
2 years ago
Blood results changing
Hi I’m new here, was diagnosed with p/m 15 years ago and been taking hydroxyurea. Recently blood results changing I’m worried it’s changing to m.f
Hi I’m new here, was diagnosed with p/m 15 years ago and been taking hydroxyurea. Recently blood results changing I’m worried it’s changing to m.f
Luger1067
in
MPN Voice
2 years ago
Vulnerability to Covid and other viruses
How much risk to catching viruses etc does being on
Hydroxycarbamide
cause? How does it impact on daily living? Thank you
How much risk to catching viruses etc does being on
Hydroxycarbamide
cause? How does it impact on daily living? Thank you
Peachjoy
in
MPN Voice
3 years ago
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Why same treatment for PV as ET?
I understand that
Hydroxycarbamide
is used to treat both ET and PV. If it successfully lowers red blood cells (as well as platelets) for PV patients, why is it used to treat ET where red blood cells are not excessive? Would it cause more problems concerning red blood cells for the ET patient?
I understand that
Hydroxycarbamide
is used to treat both ET and PV. If it successfully lowers red blood cells (as well as platelets) for PV patients, why is it used to treat ET where red blood cells are not excessive? Would it cause more problems concerning red blood cells for the ET patient?
Peachjoy
in
MPN Voice
3 years ago
Sleep
Hi Great to find this community, Just started
Hydroxycarbamide
a few months ago has anyone found any better time to take it. I suffer with very poor. sleep like alot of people, would it make any difference. Thanks all the best 🌼🥺
Hi Great to find this community, Just started
Hydroxycarbamide
a few months ago has anyone found any better time to take it. I suffer with very poor. sleep like alot of people, would it make any difference. Thanks all the best 🌼🥺
Pen7
in
MPN Voice
3 years ago
Kidney Disease Nd ET +Jak2
I recently visited an MPN Specialist who recommended staying on Hydroxyurea to treat my high platelets. In reading all the blood work test results , I see that my kidney numbers are not good and I am considered Stage 2 . Does anyone know if hydroxyurea is bad for my Kidney ( I only have one working
I recently visited an MPN Specialist who recommended staying on Hydroxyurea to treat my high platelets. In reading all the blood work test results , I see that my kidney numbers are not good and I am considered Stage 2 . Does anyone know if hydroxyurea is bad for my Kidney ( I only have one working
Auggie17
in
MPN Voice
2 years ago
Besremi
I see a lot of references to Besremi. Is Besremi also an interferon medication? In Australia we only have access to hydroxyurea or Pegasys.
I see a lot of references to Besremi. Is Besremi also an interferon medication? In Australia we only have access to hydroxyurea or Pegasys.
Phantasia
in
MPN Voice
2 years ago
?4th Covid vaccine
Hi - I have ET & take
Hydroxycarbamide
- no probs so far luckily.I have received a letter recommending I take a 4th 'booster' dose of the Covid vaccine. I am reluctant to do this without fully knowing my blood profile results & immunity level.
Hi - I have ET & take
Hydroxycarbamide
- no probs so far luckily.I have received a letter recommending I take a 4th 'booster' dose of the Covid vaccine. I am reluctant to do this without fully knowing my blood profile results & immunity level.
Annula
in
MPN Voice
3 years ago
Hydroxycarbamide side effects.
I’ve just seen my haematologist today, and she has said that she will send me for a brain scan, and a camera for my stomach. Reasons I’ve had a few really bad headaches , and have been sick a few times. Is this normal? I am on Hidroxycarbamide 2 for 4 days and 3 for 3 days. also 1 clopidogrel a day.my
I’ve just seen my haematologist today, and she has said that she will send me for a brain scan, and a camera for my stomach. Reasons I’ve had a few really bad headaches , and have been sick a few times. Is this normal? I am on Hidroxycarbamide 2 for 4 days and 3 for 3 days. also 1 clopidogrel a day.my
10061950
in
MPN Voice
3 years ago
Platelets up to 1500 since starting PEG interferon
Hello all, I hope you keeping well. I’m feeling pretty deflated, looking for some advice based on the huge amount of knowledge and experience on this forum. Had a call from haematology reg last night to say the bloods I had taken that day were abnormal- platelets up to 1500. I started on PEG interferon
Hello all, I hope you keeping well. I’m feeling pretty deflated, looking for some advice based on the huge amount of knowledge and experience on this forum. Had a call from haematology reg last night to say the bloods I had taken that day were abnormal- platelets up to 1500. I started on PEG interferon
Nickyanne
in
MPN Voice
2 years ago
New here, question on blood pressure, fatigue
Hi, great to discover this forum, and read about others' experiences! I was diagnosed with PV and the JAK2 V617F mutation in June 2021, after suffering a heart attack in March '21 due to a blocked artery. Strangely my blood counts in March were not too high, but increased rapidly thereafter, and I was
Hi, great to discover this forum, and read about others' experiences! I was diagnosed with PV and the JAK2 V617F mutation in June 2021, after suffering a heart attack in March '21 due to a blocked artery. Strangely my blood counts in March were not too high, but increased rapidly thereafter, and I was
Sewingtime
in
MPN Voice
2 years ago
Tooth Extraction 🥴
My question is do I need to stop my
Hydroxycarbamide
and Aspirin the day before removal or a couple of days before, or not Have left messages for my nurse to call to ask her but so far have not heard anything from them, dentist needs to know.
My question is do I need to stop my
Hydroxycarbamide
and Aspirin the day before removal or a couple of days before, or not Have left messages for my nurse to call to ask her but so far have not heard anything from them, dentist needs to know.
Superwoman
in
MPN Voice
3 years ago
Besremi vs Hydroxyurea
Attached is a presentation for patients regarding Besremi, in part comparing it to HU. It starts at minute 14:46 of the webinar and is by PharmaEssentia. Pretty good explanation of the drug. I was surprised at the longer term relative ineffectiveness of HU given it is the current standard of care in
Attached is a presentation for patients regarding Besremi, in part comparing it to HU. It starts at minute 14:46 of the webinar and is by PharmaEssentia. Pretty good explanation of the drug. I was surprised at the longer term relative ineffectiveness of HU given it is the current standard of care in
pepper-
in
MPN Voice
2 years ago
When should I have fourth Covid vaccination?
I have had PV for 16 years, well stabilised on
Hydroxycarbamide
. Have four monthly blood tests and telephone appointments since first lock down.
I have had PV for 16 years, well stabilised on
Hydroxycarbamide
. Have four monthly blood tests and telephone appointments since first lock down.
Wesleygrange2a
in
MPN Voice
3 years ago
Any successes with weight loss?
I have ET and after researching the effects of
hydroxycarbamide
on weight gain, I learned that the average gain at 18 mths was 3.16 kg. Of course not everyone experiences this weight gain, but I was hoping some of the concerned 'weight watchers' here have had some success in this battle.
I have ET and after researching the effects of
hydroxycarbamide
on weight gain, I learned that the average gain at 18 mths was 3.16 kg. Of course not everyone experiences this weight gain, but I was hoping some of the concerned 'weight watchers' here have had some success in this battle.
Hidden
in
MPN Voice
3 years ago
Peripheral Neuropathy
I have recently developed peripheral neuropathy from hydroxyurea and have now discontinued the medication. Has anyone else had this happen and how long did PN symptoms last?
I have recently developed peripheral neuropathy from hydroxyurea and have now discontinued the medication. Has anyone else had this happen and how long did PN symptoms last?
Phantasia
in
MPN Voice
2 years ago
Why Take Hydroxycarbamide
I am 67 so am told I am "high risk", but in trying to learn about this condition, I'm getting the feeling that taking
Hydroxycarbamide
to lower platelets and so reduce the risk of clots, is not necessarily correct?
I am 67 so am told I am "high risk", but in trying to learn about this condition, I'm getting the feeling that taking
Hydroxycarbamide
to lower platelets and so reduce the risk of clots, is not necessarily correct?
dabs121
in
MPN Voice
3 years ago
Fluctuating haematocrit
Just a query re the stabilising of haematocrit via Hydroxyurea medication for PV. How difficult has it been to settle into the optimum pattern? My wife has been on chemo tablets now for about 5 weeks after having had venesections discontinued. She had a prolapse operation on 10th March, so took an advisory
Just a query re the stabilising of haematocrit via Hydroxyurea medication for PV. How difficult has it been to settle into the optimum pattern? My wife has been on chemo tablets now for about 5 weeks after having had venesections discontinued. She had a prolapse operation on 10th March, so took an advisory
Strider52
in
MPN Voice
2 years ago
Skipping days !
Was told to reduce days of taking medication, instead of 7 days at one
Hydroxycarbamide
a day I have now to take one five days is this normal procedure? My platelet levels are normal and red/white seem to be behaving themselves , still suffering side effects though !!
Was told to reduce days of taking medication, instead of 7 days at one
Hydroxycarbamide
a day I have now to take one five days is this normal procedure? My platelet levels are normal and red/white seem to be behaving themselves , still suffering side effects though !!
indy22
in
MPN Voice
3 years ago
High altitude issues if you have ET
I have ET JAK2, on hydroxyurea with platelets and other blood cells well within normal parameters. I wish to travel to Machu Picchu. I have asked my Hematologist several weeks ago if high altitude would be a problem and haven't heard back. Has anyone had experience with high altitudes with an MPN
I have ET JAK2, on hydroxyurea with platelets and other blood cells well within normal parameters. I wish to travel to Machu Picchu. I have asked my Hematologist several weeks ago if high altitude would be a problem and haven't heard back. Has anyone had experience with high altitudes with an MPN
nightshadow
in
MPN Voice
2 years ago
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