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Experiences with
Hydroxycarbamide
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fatigue
I understand from information on the internet this a symptom of both my illness and taking
Hydroxycarbamide
. Is my understanding correct? My haematologist doesn’t seem to recognise this as a symptom. I am currently going through the worse bout I’ve ever had and no amount of sleep is helping.
I understand from information on the internet this a symptom of both my illness and taking
Hydroxycarbamide
. Is my understanding correct? My haematologist doesn’t seem to recognise this as a symptom. I am currently going through the worse bout I’ve ever had and no amount of sleep is helping.
YBSx
in
MPN Voice
2 years ago
Unbearable itching! Any ideas to calm it down?
Hello all, I started with ET but now have PV and have been on Peg for about 6 weeks with phlebotomies occasionally. My Hematocrit has gone down but my platelets are going up so the MPN Dr wants me to take Hydroxyurea at 500 2-3 times a week with low dose of Peg at 60. He really wants me back on hydrea
Hello all, I started with ET but now have PV and have been on Peg for about 6 weeks with phlebotomies occasionally. My Hematocrit has gone down but my platelets are going up so the MPN Dr wants me to take Hydroxyurea at 500 2-3 times a week with low dose of Peg at 60. He really wants me back on hydrea
Airslie
in
MPN Voice
2 years ago
Hydroxyurea Dosage
After many many years of no health concerns, my wife at 68yrs old last December, 2021 had a routine cbc and the platelets were at 2200 on the usual 150-350 scale and confirmed with a blood smear. No other blood parameters were interesting and all the typical genetic tests including the over 50 ngs genetics
After many many years of no health concerns, my wife at 68yrs old last December, 2021 had a routine cbc and the platelets were at 2200 on the usual 150-350 scale and confirmed with a blood smear. No other blood parameters were interesting and all the typical genetic tests including the over 50 ngs genetics
Kame279
in
MPN Voice
2 years ago
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The Gut Microbiota in Patients with Polycythemia Vera is Distinct from that of Healthy Controls and Varies by Treatment
»Recombinant interferon-α2 (IFN) treatment of patients with PV has been shown to be disease-modifying in terms of normalization of elevated blood cell counts in concert with a reduction in the JAK2V617F allelic burden. Therefore, we hypothesized that patients treated with IFN might have a composition
»Recombinant interferon-α2 (IFN) treatment of patients with PV has been shown to be disease-modifying in terms of normalization of elevated blood cell counts in concert with a reduction in the JAK2V617F allelic burden. Therefore, we hypothesized that patients treated with IFN might have a composition
Manouche
in
MPN Voice
2 years ago
periferal neuropathy advice
Hi ET diagnosed Feb 2015 I take 1500 mgms of
Hydroxycarbamide
5 days 1000 mgms on Sat and 500 mgms on Sunday & Asprin I am being investigated for a periferal neuropathy diagnosis. My Haematologist says not related to Hydro. your thoughts please. ynne
Hi ET diagnosed Feb 2015 I take 1500 mgms of
Hydroxycarbamide
5 days 1000 mgms on Sat and 500 mgms on Sunday & Asprin I am being investigated for a periferal neuropathy diagnosis. My Haematologist says not related to Hydro. your thoughts please. ynne
Lynne-G
in
MPN Voice
2 years ago
Hydroxycarbamide and Liver,Kidneys
Hello friends, I have a question. One of the side effects, although rare, listed for Hydroxy is damage to Liver and/or kidneys. I have had a recent scan which shows cysts on my liver and kidney malfunction of some sort. Just wondering if anyone has come across this side effect of Hydroxy.. I am on 500
Hello friends, I have a question. One of the side effects, although rare, listed for Hydroxy is damage to Liver and/or kidneys. I have had a recent scan which shows cysts on my liver and kidney malfunction of some sort. Just wondering if anyone has come across this side effect of Hydroxy.. I am on 500
azaelea
in
MPN Voice
2 years ago
Brain fog, fatigue and burning feet.
Diagnosed with ET Jak 2 in August 2022. Started on Hydroxyurea 500mg per day and 81 mg aspirin twice per day. My platelets have been high for years but ignored by Dr’s. Started having neuropathy in feet years ago, mostly at night and prescribed Gabapentin. Doesn’t help all that much. Now bottom
Diagnosed with ET Jak 2 in August 2022. Started on Hydroxyurea 500mg per day and 81 mg aspirin twice per day. My platelets have been high for years but ignored by Dr’s. Started having neuropathy in feet years ago, mostly at night and prescribed Gabapentin. Doesn’t help all that much. Now bottom
KHardey
in
MPN Voice
2 years ago
hydroxycarbamide and rash have ET jak
hi everyone been on meds 6 weeks and have a rash on my tummy and back what meds's help this thankyou
hi everyone been on meds 6 weeks and have a rash on my tummy and back what meds's help this thankyou
Daisyduke40
in
MPN Voice
2 years ago
Hydroxy Rare Side Effects
I note that one of the more rare side effects listed for Hydroxyurea is Dysuria / Renal disorders. I have been on Hydroxy for 4 years and am having recurring U.T.I.’s which are becoming more frequent. I have to have a course of antibiotics each time. I wondered if anyone else has suffered with this when
I note that one of the more rare side effects listed for Hydroxyurea is Dysuria / Renal disorders. I have been on Hydroxy for 4 years and am having recurring U.T.I.’s which are becoming more frequent. I have to have a course of antibiotics each time. I wondered if anyone else has suffered with this when
azaelea
in
MPN Voice
2 years ago
Can Hydrea Resolve (fix) Marrow?
In a recent thread one report has HU providing a strong benefit to marrow, esp for ET, but some in PV too, discussed here: https://healthunlocked.com/mpnvoice/posts/148588347/high-low-jak2-and-risk-of-mf-progression This is a surprise. So I did a quick search and two further reports come up supporting
In a recent thread one report has HU providing a strong benefit to marrow, esp for ET, but some in PV too, discussed here: https://healthunlocked.com/mpnvoice/posts/148588347/high-low-jak2-and-risk-of-mf-progression This is a surprise. So I did a quick search and two further reports come up supporting
EPguy
in
MPN Voice
2 years ago
Is this normal for platelets to increase so quickly ?
I had a bit of a cold for a few days and also didn’t feel so great –the cold went away but still didn’t feel great. Blood test results at the hospital showed many highs and lows, the white count was way up and my platelets which were always low 320 increased to around 370. Over several days, the hospital
I had a bit of a cold for a few days and also didn’t feel so great –the cold went away but still didn’t feel great. Blood test results at the hospital showed many highs and lows, the white count was way up and my platelets which were always low 320 increased to around 370. Over several days, the hospital
kitttycat
in
MPN Voice
2 years ago
Newbie with PV and questions!
I was given a diagnosis of JAK2 PV and began
Hydroxycarbamide
, Allopurinol and aspirin today. No venesection though, Haematologist says it would cause my white blood cells to rise even more in response. I was a bit surprised as from what I've read it's the go-to treatment.
I was given a diagnosis of JAK2 PV and began
Hydroxycarbamide
, Allopurinol and aspirin today. No venesection though, Haematologist says it would cause my white blood cells to rise even more in response. I was a bit surprised as from what I've read it's the go-to treatment.
ExtraFox
in
MPN Voice
2 years ago
Xarelto (blood thinner) and hydroxycarbamide
When I was diagnosed a year ago with ET/PV I had already had a blood clot in my leg (large but superficial) followed a few months later by a small clot in my lung after treatment for a varicose vein. This was followed a few months later by two small clots - one in each lung. I was put on Xarelto 20
When I was diagnosed a year ago with ET/PV I had already had a blood clot in my leg (large but superficial) followed a few months later by a small clot in my lung after treatment for a varicose vein. This was followed a few months later by two small clots - one in each lung. I was put on Xarelto 20
Jelbea
in
MPN Voice
2 years ago
Skin changes on hydroxycarbamide
Hi I’m interested to know if anyone else has had skin changes on long term
hydroxycarbamide
I’m on 1500 mg daily over 7 days This has had a dramatic change in my opinion to my skin intermittent rash on calf’s on my torso on my forehead and a brown birth mark type patch on my cheek!
Hi I’m interested to know if anyone else has had skin changes on long term
hydroxycarbamide
I’m on 1500 mg daily over 7 days This has had a dramatic change in my opinion to my skin intermittent rash on calf’s on my torso on my forehead and a brown birth mark type patch on my cheek!
PhilReade
in
MPN Voice
2 years ago
Getting an MPN specialist as advised by Hunter and experience of GasLighting
Every time I was told this had nothing to do with my ET/PV or my treatment on
hydroxycarbamide
. In my own mind I knew it was to do with my ailment. In fact on my last visit to the haem. clinic I was told that they only dealt with the levels of blood cells and nothing else!!!! Prof.
Every time I was told this had nothing to do with my ET/PV or my treatment on
hydroxycarbamide
. In my own mind I knew it was to do with my ailment. In fact on my last visit to the haem. clinic I was told that they only dealt with the levels of blood cells and nothing else!!!! Prof.
Jelbea
in
MPN Voice
2 years ago
Hydrea contains Lactose, could it affect Lactose Tolerance?
Recently member Winchie posted on GI improvements while taking HU, noting being lactose intolerant prior to taking HU. This is a great result. https://healthunlocked.com/mpnvoice/posts/148527620/hu-one-good-thing -- So I checked out Hydrea, and it actually contains lactose. Usually such sensitive
Recently member Winchie posted on GI improvements while taking HU, noting being lactose intolerant prior to taking HU. This is a great result. https://healthunlocked.com/mpnvoice/posts/148527620/hu-one-good-thing -- So I checked out Hydrea, and it actually contains lactose. Usually such sensitive
EPguy
in
MPN Voice
2 years ago
Hydroxycarbamide and Sun exposure
Title hopefully says it all, How careful do you have to be in and around sunshine whilst on
hydroxycarbamide
. Thanks
Title hopefully says it all, How careful do you have to be in and around sunshine whilst on
hydroxycarbamide
. Thanks
Smudger0122
in
MPN Voice
2 years ago
Hydroxyurea wait time
Has anyone taking Hydroxyurea for ET felt better (less fatigue)in as little as 2days? Seems as if it worked for me that way, or else psychosomatic response. Thanks
Has anyone taking Hydroxyurea for ET felt better (less fatigue)in as little as 2days? Seems as if it worked for me that way, or else psychosomatic response. Thanks
Jazzman7
in
MPN Voice
2 years ago
TET2 Mutation
I have ET JAK2 pos and take
hydroxycarbamide
and low dose aspirin. After a routine blood test I've been informed that I have another mutation known as TET2. Can anyone throw any light on this please, what is it and what does it mean? Thanks Ian
I have ET JAK2 pos and take
hydroxycarbamide
and low dose aspirin. After a routine blood test I've been informed that I have another mutation known as TET2. Can anyone throw any light on this please, what is it and what does it mean? Thanks Ian
Trueblue8
in
MPN Voice
2 years ago
Essential Thrombocytosis and having knee surgery
I am looking for feedback on how this diagnosis will effect a fairly major surgery. I have a need for total knee replacement- have already had arthroscopy on my meniscus and now bone on bone with arthritis on more than 60% of the femur/tibia. It has affected my life such that I want to have this procedure
I am looking for feedback on how this diagnosis will effect a fairly major surgery. I have a need for total knee replacement- have already had arthroscopy on my meniscus and now bone on bone with arthritis on more than 60% of the femur/tibia. It has affected my life such that I want to have this procedure
Kauaiboy
in
MPN Voice
2 years ago
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