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Experiences with
Hydroxycarbamide
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Transitioning from HU to Ruxolitinib
I am hoping that people here can give me the benefit of their experience of switching from
hydroxycarbamide
to ruxolitinib. I had a consultation today with Prof Mead at the Churchill hospital Oxford and he is suggesting that such a switch would be a good move.
I am hoping that people here can give me the benefit of their experience of switching from
hydroxycarbamide
to ruxolitinib. I had a consultation today with Prof Mead at the Churchill hospital Oxford and he is suggesting that such a switch would be a good move.
friendofpiglet
in
MPN Voice
3 months ago
Platlets
Hiya just recovering from gall bladder infection which was quite severe been on two lots of antibiotics still got a couple of days left my platlets are usually around 600 hundred marker they are 1000 from yesterday blood test I take one
hydroxycarbamide
one day and two the next is this normall
Hiya just recovering from gall bladder infection which was quite severe been on two lots of antibiotics still got a couple of days left my platlets are usually around 600 hundred marker they are 1000 from yesterday blood test I take one
hydroxycarbamide
one day and two the next is this normall
Annma
in
MPN Voice
2 months ago
Malaria tablets
Am on
hydroxycarbamide
and daily aspirin with a diagnosis of ET. Has anyone taken malaria tablets with such a condition? TIA.
Am on
hydroxycarbamide
and daily aspirin with a diagnosis of ET. Has anyone taken malaria tablets with such a condition? TIA.
SazzaC
in
MPN Voice
4 months ago
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Headaches + fatigue
I have been taking
hydroxycarbamide
+ aspirin for the last 6 weeks and they have reduced these bouts, but not totally. I have a bone marrow biopsy tomorrow to access the extent of my MPN and how they will go forward with treatment.
I have been taking
hydroxycarbamide
+ aspirin for the last 6 weeks and they have reduced these bouts, but not totally. I have a bone marrow biopsy tomorrow to access the extent of my MPN and how they will go forward with treatment.
Micky1956
in
MPN Voice
2 months ago
shingrix
I am nearly 79 and have been dx with ET since 2021 and on
hydroxycarbamide
and low dose aspirin. I got shingles in June 2022 and it was pretty awful for about 4 months and my foot still has nerve damage.
I am nearly 79 and have been dx with ET since 2021 and on
hydroxycarbamide
and low dose aspirin. I got shingles in June 2022 and it was pretty awful for about 4 months and my foot still has nerve damage.
Michali45
in
MPN Voice
2 months ago
Hydroxycarbamide
hello everyone I have ET JAK2 positive and take
Hydroxycarbamide
. I take this in the evening. My haematologist nurse has informed me this should be taken in the morning. What time of day do you take your. I understood that the evening is better so any affects are while you sleep.
hello everyone I have ET JAK2 positive and take
Hydroxycarbamide
. I take this in the evening. My haematologist nurse has informed me this should be taken in the morning. What time of day do you take your. I understood that the evening is better so any affects are while you sleep.
YBSx
in
MPN Voice
7 months ago
Sore mouth
I am currently on 1000 mg of
hydroxycarbamide
daily. I have been experiencing a very sore mouth and tongue which is making eating and drinking uncomfortable.
I am currently on 1000 mg of
hydroxycarbamide
daily. I have been experiencing a very sore mouth and tongue which is making eating and drinking uncomfortable.
Lilbert
in
MPN Voice
6 months ago
Frequent styes
Could this be a side effect of ET or
Hydroxycarbamide
?
Could this be a side effect of ET or
Hydroxycarbamide
?
Pippapot
in
MPN Voice
4 months ago
sunscreen recommendations
I have ET and am on
hydroxycarbamide
. I have rosacea and I am having difficulty with sun creams on my face I seem always to get a reaction in one area. My makeup is Clinique with factor 50 in it but don’t like wearing makeup all the time.
I have ET and am on
hydroxycarbamide
. I have rosacea and I am having difficulty with sun creams on my face I seem always to get a reaction in one area. My makeup is Clinique with factor 50 in it but don’t like wearing makeup all the time.
Maxpenny
in
MPN Voice
11 hours ago
Complementary health
I feel i get frightened to come off any of drugs and go with what Dr's say which has helped so much and am very greatful iam on blood thinner,
Hydroxycarbamide
for 4 years with PV, don't like staying on it, up down with different symptoms like alot of people i here.
I feel i get frightened to come off any of drugs and go with what Dr's say which has helped so much and am very greatful iam on blood thinner,
Hydroxycarbamide
for 4 years with PV, don't like staying on it, up down with different symptoms like alot of people i here.
Pen7
in
MPN Voice
2 days ago
fatigue
I have been on
Hydroxycarbamide
, 500 mg per day and 75 mg aspirin since then with platelets decreasing to 310 last week. Been not too bad until encountered the fatigue which I find overwhelming. It surprised me how it just suddenly happens and how debilitating it is.
I have been on
Hydroxycarbamide
, 500 mg per day and 75 mg aspirin since then with platelets decreasing to 310 last week. Been not too bad until encountered the fatigue which I find overwhelming. It surprised me how it just suddenly happens and how debilitating it is.
Maxpenny
in
MPN Voice
4 months ago
Viramin B12 deficiency
I am Jak 2 ET and taking 1000mg
hydroxycarbamide
daily and 75mg aspirin. I saw my consultant today and he said my vitamin B12 levels were extremely low so I have to have B12 injections every other day for two weeks then one a week for four weeks.
I am Jak 2 ET and taking 1000mg
hydroxycarbamide
daily and 75mg aspirin. I saw my consultant today and he said my vitamin B12 levels were extremely low so I have to have B12 injections every other day for two weeks then one a week for four weeks.
Lilbert
in
MPN Voice
4 months ago
Medical exemption certificate
I receive my
hydroxycarbamide
free from the hospital pharmacy , but have to pay for a prescription for my blood pressure tablets and asthma inhalers prescribed by my GP. I know certain medical conditions qualify you for all free prescriptions. What are other folks experiences in this area ?
I receive my
hydroxycarbamide
free from the hospital pharmacy , but have to pay for a prescription for my blood pressure tablets and asthma inhalers prescribed by my GP. I know certain medical conditions qualify you for all free prescriptions. What are other folks experiences in this area ?
Catbells66
in
MPN Voice
4 months ago
Diet Advice for ET please
I was diagnosed three years ago with ET and started on
hydroxycarbamide
. The doctor told me very abruptly that I had a blood cancer and would have to take chemotherapy for the rest of my life.
I was diagnosed three years ago with ET and started on
hydroxycarbamide
. The doctor told me very abruptly that I had a blood cancer and would have to take chemotherapy for the rest of my life.
Jelbea
in
MPN Voice
3 months ago
Itching!
My
hydroxycarbamide
was stopped in February ( after 11 years use) even if I brush my skin now the itch, prickling starts. I take fexofenadine daily , cold showers, natural. Unperfumed products.Does anyone have any personal advice please? I'm at my wits end. Thanks in advance, sue x
My
hydroxycarbamide
was stopped in February ( after 11 years use) even if I brush my skin now the itch, prickling starts. I take fexofenadine daily , cold showers, natural. Unperfumed products.Does anyone have any personal advice please? I'm at my wits end. Thanks in advance, sue x
soomoo
in
MPN Voice
5 months ago
Post ET MF - Advice Please
He then started taking
Hydroxycarbamide
, but he didn't tolerate it well so was switched to Anegrelide, which suited him well for many years. However, several years ago we were told his condition had progressed to MF, and his consultant put him back on
Hydroxycarbamide
.
He then started taking
Hydroxycarbamide
, but he didn't tolerate it well so was switched to Anegrelide, which suited him well for many years. However, several years ago we were told his condition had progressed to MF, and his consultant put him back on
Hydroxycarbamide
.
moongazer100
in
MPN Voice
6 months ago
I need advice about taking Hydroxycarbamide
I’m worried about starting my new meds and wondered how anyone taking
Hydroxycarbamide
has managed with side effects.
I’m worried about starting my new meds and wondered how anyone taking
Hydroxycarbamide
has managed with side effects.
Zoebowie
in
MPN Voice
6 months ago
Getting admitted to hospital in Wales update
As she had a bag of platelets her platelets count went to 56 within two days Hgb was 90 then by Friday platelets were 625 Hgb 86 today Monday platelets were 1065 and Hgb 81 no more blood transfusion promised as gastroenterology say she will only bleed it away, she has resumed
hydroxycarbamide
at one
As she had a bag of platelets her platelets count went to 56 within two days Hgb was 90 then by Friday platelets were 625 Hgb 86 today Monday platelets were 1065 and Hgb 81 no more blood transfusion promised as gastroenterology say she will only bleed it away, she has resumed
hydroxycarbamide
at one
jointpain
in
MPN Voice
2 months ago
gastroscopy
Im anxious to know uf any member of the forum has had a Gastroscopy while taking
Hydroxycarbamide
and Xralto ( blood thinner) . Thank you
Im anxious to know uf any member of the forum has had a Gastroscopy while taking
Hydroxycarbamide
and Xralto ( blood thinner) . Thank you
Kilmichael
in
MPN Voice
7 months ago
Improvement
I immediately had my
Hydroxycarbamide
increased and my aspirin changed to Clopidogrel and now 4 weeks later my platelet count is 406. What happens now. Do I just continue taking the
Hydroxycarbamide
for the rest of my Life?
I immediately had my
Hydroxycarbamide
increased and my aspirin changed to Clopidogrel and now 4 weeks later my platelet count is 406. What happens now. Do I just continue taking the
Hydroxycarbamide
for the rest of my Life?
ArchieCatPurr
in
MPN Voice
7 months ago
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