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Experiences with
Ruxolitinib
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UPDATE: WARWICK's ASCT Journey...
Interstingly I am back on the
Ruxolitinib
as it has been found to reduce the inflammation generated by Graft v Host Disease. They have been increasing the dose slowly as they wean of the steroids.
Interstingly I am back on the
Ruxolitinib
as it has been found to reduce the inflammation generated by Graft v Host Disease. They have been increasing the dose slowly as they wean of the steroids.
socrates_8
in
MPN Voice
3 years ago
Proximal onycholysis
I had to quit hydroxyurea but have been taking
ruxolitinib
for over 6 months. Basically, there is nothing I can do to stop my nail from separating and peeling off. Just throwing this out there for inquiry. Thank you all!!!
I had to quit hydroxyurea but have been taking
ruxolitinib
for over 6 months. Basically, there is nothing I can do to stop my nail from separating and peeling off. Just throwing this out there for inquiry. Thank you all!!!
Buggerbear
in
MPN Voice
3 years ago
Inflammatory Pathophysiology as a Contributor to MPN
« Clinical evidence that JAK2 inhibition by
ruxolitinib
in MF neither reliably reduces malignant clonal burden nor eliminates cytokine elevations, suggests targeting cytokine mediated signaling as a therapeutic strategy, which is being pursued in new clinical trials » « The clearly prominent role of
« Clinical evidence that JAK2 inhibition by
ruxolitinib
in MF neither reliably reduces malignant clonal burden nor eliminates cytokine elevations, suggests targeting cytokine mediated signaling as a therapeutic strategy, which is being pursued in new clinical trials » « The clearly prominent role of
Manouche
in
MPN Voice
3 years ago
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Ruxolitinib and vaccine efficacy
Has anyone extracted anything useful from the blizzard of recent press coverage and small-scale studies with immunosuppressed individuals, about what exactly is the vaccine efficacy for those of us on
Ruxolitinib
? I am thoroughly confused and how safe I am now that I’ve been double vaccinated.
Has anyone extracted anything useful from the blizzard of recent press coverage and small-scale studies with immunosuppressed individuals, about what exactly is the vaccine efficacy for those of us on
Ruxolitinib
? I am thoroughly confused and how safe I am now that I’ve been double vaccinated.
Rob58
in
MPN Voice
3 years ago
Antibodies
That is despite a dose of 20 mg
Ruxolitinib
twice daily and advanced post ET MF. I have a very low white count but almost normal leukocytes. Whilst it is not a massively high number of antibodies -it appears to be on the lower end of a normal response.
That is despite a dose of 20 mg
Ruxolitinib
twice daily and advanced post ET MF. I have a very low white count but almost normal leukocytes. Whilst it is not a massively high number of antibodies -it appears to be on the lower end of a normal response.
beetle
in
MPN Voice
3 years ago
Has anyone that’s prone to depression taken PEG INF / Pegasys?
I guess I’m clutching at straws here but I’m not keen and will probably decide to not start
Ruxolitinib
at this time, so that just leaves Peg.
I guess I’m clutching at straws here but I’m not keen and will probably decide to not start
Ruxolitinib
at this time, so that just leaves Peg.
Magentas
in
MPN Voice
3 years ago
Pre-fibrotic MF
So he would like to put me on
ruxolitinib
on my next visit. Approval is needed due to my age? I'm 36. My current symptoms are fevers, sweats, burning feet, blurred vision, no appetite, underweight sitting at 47kg, enlarged spleen, bone pain.
So he would like to put me on
ruxolitinib
on my next visit. Approval is needed due to my age? I'm 36. My current symptoms are fevers, sweats, burning feet, blurred vision, no appetite, underweight sitting at 47kg, enlarged spleen, bone pain.
Kriddle01
in
MPN Voice
3 years ago
I have myelofibrosis and am on 20mgs if Ruxolitinib twice daily. However, my spleen has grown to enormous proportions and the Ruxolitini
My Haematologist is putting me on Cytidine. What is the frequency of taking this?
My Haematologist is putting me on Cytidine. What is the frequency of taking this?
billybrock
in
MPN Voice
3 years ago
Hip Replacement Surgery with MPN’s essentially MF etc ?
Ruxolitinib
sorted out my Bone Pain 90% of the time and I have wonderful Clinicians including my local Haematologist and I attend Guy’s occasionally to see the good Professor Harrison, C-19 permitting of course...
Ruxolitinib
sorted out my Bone Pain 90% of the time and I have wonderful Clinicians including my local Haematologist and I attend Guy’s occasionally to see the good Professor Harrison, C-19 permitting of course...
pontygirl
in
MPN Voice
3 years ago
Radiotherapy for sarcomatoid sccs related to ruxolitinib: would welcome dosage experiences
Hi. Thank you in advance for your time. I’m having 50 grays of radiation split into 20 doses ( 5 days a week) to prevent further recurrences of SCCs. on my face. Removed surgically. . Nasty stuff , and face is already sore and itchy after 6 treatments. Can’t find any evidence base for that level of
Hi. Thank you in advance for your time. I’m having 50 grays of radiation split into 20 doses ( 5 days a week) to prevent further recurrences of SCCs. on my face. Removed surgically. . Nasty stuff , and face is already sore and itchy after 6 treatments. Can’t find any evidence base for that level of
Rachelthepotter
in
MPN Voice
3 years ago
Dear friends, I have a ‘what would you do’ scenario that I’d really love your help with, please.
She implied I will have no trouble getting
Ruxolitinib
but first some antibody, I think, tests need to be done. She suggested I start
Ruxolitinib
now because I am at the ‘early stage’ (huh) and it most likely extends life expectancy….but only at the early stage.
She implied I will have no trouble getting
Ruxolitinib
but first some antibody, I think, tests need to be done. She suggested I start
Ruxolitinib
now because I am at the ‘early stage’ (huh) and it most likely extends life expectancy….but only at the early stage.
Magentas
in
MPN Voice
3 years ago
A day of surprises
He said that I am quite symptomatic but my DIPSS score is still Int1 and therefore I am not eligible for
ruxolitinib
. He offered me the option of a drug trial but that would then rule me out for a stem cell transplant in the medium term.
He said that I am quite symptomatic but my DIPSS score is still Int1 and therefore I am not eligible for
ruxolitinib
. He offered me the option of a drug trial but that would then rule me out for a stem cell transplant in the medium term.
ConniesDad
in
MPN Voice
3 years ago
Help make a drug to treat GvHD available to patients
The submissions will help them make recommendations to the provinces and territories regarding funding for
ruxolitinib
(Jakavi), a new treatment for GvHD.
The submissions will help them make recommendations to the provinces and territories regarding funding for
ruxolitinib
(Jakavi), a new treatment for GvHD.
CLL_Canada_Group
in
CLL Support
3 years ago
Funding for Ruxolitinib
As an alternative medication my haematologist has recommended
Ruxolitinib
which she said unfortunately she is unable to fund. Perhaps those of you in the UK and are on this medication could tell me please who funds it. Many thanks.
As an alternative medication my haematologist has recommended
Ruxolitinib
which she said unfortunately she is unable to fund. Perhaps those of you in the UK and are on this medication could tell me please who funds it. Many thanks.
Heather270240
in
MPN Voice
3 years ago
Clumping platelets?
I have post ET MF, on
Ruxolitinib
. Thanks all, Jennie
I have post ET MF, on
Ruxolitinib
. Thanks all, Jennie
Otterfield
in
MPN Voice
3 years ago
Enlarged Spleen
The
Ruxolitinib
is not reducing it, and it is now very painful. I cannot get comfortable and cannot sleep. My appetite is also affected and I cannot cleat my plate.
The
Ruxolitinib
is not reducing it, and it is now very painful. I cannot get comfortable and cannot sleep. My appetite is also affected and I cannot cleat my plate.
billybrock
in
MPN Voice
3 years ago
Duloxetine 30mg
Anyone else taken Duloxetine with or without
Ruxolitinib
?
Anyone else taken Duloxetine with or without
Ruxolitinib
?
StreetPastor
in
MPN Voice
3 years ago
Good News. Update on previous posts.
It was agreed that
Ruxolitinib
would be the best. She would arrange it and it would take about 2 weeks. What a wonderful hassle free appointment I can't belive it was so easy. Just had a text msg with a follow up appt on 27 April. Sun is shining lock down ended can't believe my luck.
It was agreed that
Ruxolitinib
would be the best. She would arrange it and it would take about 2 weeks. What a wonderful hassle free appointment I can't belive it was so easy. Just had a text msg with a follow up appt on 27 April. Sun is shining lock down ended can't believe my luck.
Heather270240
in
MPN Voice
3 years ago
Ruxolitinib and Anaemia
I'm struggling with heavy anaemia and very very low platelets after four months of
Ruxolitinib
. It's not pleasant at all, and I need blood transfusions every two weeks or so. There is a danger of my ferritin levels getting too high as well. I gather this happens a lot.
I'm struggling with heavy anaemia and very very low platelets after four months of
Ruxolitinib
. It's not pleasant at all, and I need blood transfusions every two weeks or so. There is a danger of my ferritin levels getting too high as well. I gather this happens a lot.
RobinBrum
in
MPN Voice
4 years ago
Lack of energy
Age 79 and been treated since 2007 on
Ruxolitinib
5mg twice a day and injections exprex and zarzio 3 times a week. I have transfusion occasionally. Is there anything you could recommend to boast my energy?
Age 79 and been treated since 2007 on
Ruxolitinib
5mg twice a day and injections exprex and zarzio 3 times a week. I have transfusion occasionally. Is there anything you could recommend to boast my energy?
WeeHarry
in
MPN Voice
4 years ago
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