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Experiences with
Ruxolitinib
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MF, platelet count and feeling anxious
I am on 20mg
Ruxolitinib
twice daily. Thank you, Jennie
I am on 20mg
Ruxolitinib
twice daily. Thank you, Jennie
Otterfield
in
MPN Voice
4 years ago
Sad news
Starting
Ruxolitinib
after a couple of years was a life saver but in the last two years things became more challenging and eventually he became transfusion dependent aged 80. It was only in the last six weeks of his life that the disease became more troublesome.
Starting
Ruxolitinib
after a couple of years was a life saver but in the last two years things became more challenging and eventually he became transfusion dependent aged 80. It was only in the last six weeks of his life that the disease became more troublesome.
Fika500
in
MPN Voice
4 years ago
Oxford Vaccination
Just wondering if anyone else on
Ruxolitinib
has had this?
Just wondering if anyone else on
Ruxolitinib
has had this?
StreetPastor
in
MPN Voice
4 years ago
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Covid vaccine appointment
I have post ET MF, on
Ruxolitinib
and wondering what to expect in terms of side effects. Anyone else with MF on Rux had it? Thanks.
I have post ET MF, on
Ruxolitinib
and wondering what to expect in terms of side effects. Anyone else with MF on Rux had it? Thanks.
Otterfield
in
MPN Voice
4 years ago
One for Prof Harrison via Maz?
I am taking 20mg
Ruxolitinib
twice daily and have a consistently low white count with neutrophils today at 0.7. Would the advice to stop treatment before receiving the vaccine apply? I am very aware that
Ruxolitinib
cannot be stopped without tapering off.
I am taking 20mg
Ruxolitinib
twice daily and have a consistently low white count with neutrophils today at 0.7. Would the advice to stop treatment before receiving the vaccine apply? I am very aware that
Ruxolitinib
cannot be stopped without tapering off.
beetle
in
MPN Voice
4 years ago
Surviving Covid
I take
Ruxolitinib
. I am 44. I have shielded as many of us have. As a family with 3 children, we have been very careful to avoid places and people but yet contracted Covid the week before Christmas.
I take
Ruxolitinib
. I am 44. I have shielded as many of us have. As a family with 3 children, we have been very careful to avoid places and people but yet contracted Covid the week before Christmas.
MamPRV
in
MPN Voice
4 years ago
UK Covid Vaccine & Ruxolitinib
Anyone had the UK Vaccine that takes
Ruxolitinib
for post et-MF. If so how was it for you? Any side effects?
Anyone had the UK Vaccine that takes
Ruxolitinib
for post et-MF. If so how was it for you? Any side effects?
StreetPastor
in
MPN Voice
4 years ago
MF and platelet transfusions
Fortunately, his symptoms have been mild / controlled by the
ruxolitinib
- he is not in pain and sleeps and eats well although he is fatigued. Just recently, as his platelets have got very low, he has lots of bleeding under the skin all over his legs, arms and abdomen and bruises and bleeds easily.
Fortunately, his symptoms have been mild / controlled by the
ruxolitinib
- he is not in pain and sleeps and eats well although he is fatigued. Just recently, as his platelets have got very low, he has lots of bleeding under the skin all over his legs, arms and abdomen and bruises and bleeds easily.
dnsn
in
MPN Voice
4 years ago
RUXCOVID study (NCT04362137) ~ FAILED TO BENEFIT
Post by MPN-MATE Admin » Wed Dec 16, 2020 10:41 pm [i]
Ruxolitinib
fails to provide clinical benefit in patients with COVID-19-related cytokine storm[/i] [i]By Gizem Karakuleli Dec 15, 2020[/i] Evening all...
Post by MPN-MATE Admin » Wed Dec 16, 2020 10:41 pm [i]
Ruxolitinib
fails to provide clinical benefit in patients with COVID-19-related cytokine storm[/i] [i]By Gizem Karakuleli Dec 15, 2020[/i] Evening all...
socrates_8
in
MPN Voice
4 years ago
Pot Belly
I have MF on
Ruxolitinib
5mg 2 per day, eprex injections once a week and zario 3 times a week.
I have MF on
Ruxolitinib
5mg 2 per day, eprex injections once a week and zario 3 times a week.
WeeHarry
in
MPN Voice
4 years ago
RUXOLITINIB & Pulmonary Hypertension (PH)
Hence, I decided to do a tad more digging into my condition, and perhaps some of the observations noted by others for those of us being treated by a JAK Inhibitor, like
Ruxolitinib
...
Hence, I decided to do a tad more digging into my condition, and perhaps some of the observations noted by others for those of us being treated by a JAK Inhibitor, like
Ruxolitinib
...
socrates_8
in
MPN Voice
4 years ago
Ruxolitinib/Jakafi interaction with Warfarin/Coumadin
I am three weeks into a brand new course of
Ruxolitinib
, and on a long-term course of Warfarin. I researched possible interactions, and found a range of different answers, from zero interaction, to a warning that it would double the efficacy of warfarin.
I am three weeks into a brand new course of
Ruxolitinib
, and on a long-term course of Warfarin. I researched possible interactions, and found a range of different answers, from zero interaction, to a warning that it would double the efficacy of warfarin.
RobinBrum
in
MPN Voice
4 years ago
Side effects of Ruxolitinib
I've been offered a place on the Mithridate trial and wondered if anyone can tell me about any side effects that they experience from
Ruxolitinib
?
I've been offered a place on the Mithridate trial and wondered if anyone can tell me about any side effects that they experience from
Ruxolitinib
?
60Something
in
MPN Voice
4 years ago
Shingles!
I happened to have an appointment with my consultant and she decided to prescribe a prophylactic dose of Aciclovir, as I'm on
Ruxolitinib
, therefore immune suppressed. A couple of days later actual Shingles developed and I am now just starting 5 x 800mg of Aciclovir a day.
I happened to have an appointment with my consultant and she decided to prescribe a prophylactic dose of Aciclovir, as I'm on
Ruxolitinib
, therefore immune suppressed. A couple of days later actual Shingles developed and I am now just starting 5 x 800mg of Aciclovir a day.
Otterfield
in
MPN Voice
4 years ago
Help deciding about Transplant
I am well managed on
Ruxolitinib
30 mg daily, Aspirin and Acyclovir. My consuhas recently referred me to a transplant construct discuss a possible transplant. I am trying make my decision, which I am finding so difficult.
I am well managed on
Ruxolitinib
30 mg daily, Aspirin and Acyclovir. My consuhas recently referred me to a transplant construct discuss a possible transplant. I am trying make my decision, which I am finding so difficult.
Cazbolac
in
MPN Voice
4 years ago
Is there a link between PV and Alopecia areata (AA)?
Ruxolitinib
is one that I've seen mentioned and recognised it from here. Is there a connection? Is it a clue to my PV?
Ruxolitinib
is one that I've seen mentioned and recognised it from here. Is there a connection? Is it a clue to my PV?
Lettie_WP
in
MPN Voice
4 years ago
Ruxolitinib
Hi Folks I am about to start on
Ruxolitinib
does anyone have any advice for me please.I am already on Hydroxycarbamide and aspirin. Thanks
Hi Folks I am about to start on
Ruxolitinib
does anyone have any advice for me please.I am already on Hydroxycarbamide and aspirin. Thanks
Big-Ted
in
MPN Voice
4 years ago
Going well so far with MF on Ruxolitinib
I thought I would just update you and let you know that
Ruxolitinib
appears to be working well for me. My counts are still not great but are, to quote my haematology nurse, "going in the right direction." My energy levels have improved hugely and I'm increasing the distance I can walk day by day.
I thought I would just update you and let you know that
Ruxolitinib
appears to be working well for me. My counts are still not great but are, to quote my haematology nurse, "going in the right direction." My energy levels have improved hugely and I'm increasing the distance I can walk day by day.
Otterfield
in
MPN Voice
4 years ago
Question for those living with MF
I was diagnosed in August and have been on
Ruxolitinib
for almost seven weeks. My blood counts have been really encouraging generally and my red cells are being topped up with transfusions. Last week's Hb before the transfusion was 91, today's was 87.
I was diagnosed in August and have been on
Ruxolitinib
for almost seven weeks. My blood counts have been really encouraging generally and my red cells are being topped up with transfusions. Last week's Hb before the transfusion was 91, today's was 87.
Otterfield
in
MPN Voice
4 years ago
Husband in hospital.
So his
RUXOLITINIB
meds have been reduced. His HB level really dropped but because he was so ill they couldn't give him a blood transfusion. Normally when he has blood transfusion they get it from blood bank here, in Birmingham. Instead on Thursday it had to be brought from I believe from Bristol.
So his
RUXOLITINIB
meds have been reduced. His HB level really dropped but because he was so ill they couldn't give him a blood transfusion. Normally when he has blood transfusion they get it from blood bank here, in Birmingham. Instead on Thursday it had to be brought from I believe from Bristol.
Jean24
in
MPN Voice
4 years ago
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