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Experiences with
Ruxolitinib
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SCT risks
On balance both my husband and I still want to go ahead, partly because Prof Harrison has said that I am a "good candidate" and partly because of the limits of
Ruxolitinib
and the chance of progression to AML. It has left us both thoughtful and wishing it would all just go away.
On balance both my husband and I still want to go ahead, partly because Prof Harrison has said that I am a "good candidate" and partly because of the limits of
Ruxolitinib
and the chance of progression to AML. It has left us both thoughtful and wishing it would all just go away.
Otterfield
in
MPN Voice
3 years ago
Turmeric and Ruxolitinib
However in March I started taking
Ruxolitinib
and Pharmacy at Guys said I must stop taking the Turmeric. I'm gutted. I stopped about a month ago and the pain has returned big time. Does anyone taking
Ruxolitinib
also take Turmeric or perhaps someone may know what the reactions are.
However in March I started taking
Ruxolitinib
and Pharmacy at Guys said I must stop taking the Turmeric. I'm gutted. I stopped about a month ago and the pain has returned big time. Does anyone taking
Ruxolitinib
also take Turmeric or perhaps someone may know what the reactions are.
Heather270240
in
MPN Voice
3 years ago
About MF progression
I started on 5mg
ruxolitinib
6 weeks ago so I know it is too early to say if it's working, however I would like to know more about how it how it feels to have MF getting worse. I have done the DIPSS + score and that gives a median survival of about another 3 years.
I started on 5mg
ruxolitinib
6 weeks ago so I know it is too early to say if it's working, however I would like to know more about how it how it feels to have MF getting worse. I have done the DIPSS + score and that gives a median survival of about another 3 years.
Scaredy_cat
in
MPN Voice
3 years ago
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Decision made
Basically I realised that if I don't go ahead, I will just have to live knowing that at some unspecified time, the
Ruxolitinib
will stop working and it will probably be downhill from then on. My consultant said that if I want a good chance if living into old age, the SCT is the way to go.
Basically I realised that if I don't go ahead, I will just have to live knowing that at some unspecified time, the
Ruxolitinib
will stop working and it will probably be downhill from then on. My consultant said that if I want a good chance if living into old age, the SCT is the way to go.
Otterfield
in
MPN Voice
3 years ago
Extremely worried about the value of IL-6 and IL-8 explored, what should I do?
Now I take
Ruxolitinib
7.5mg/bid /day and interferon per several days. The hemogram was controlled lower than normal, especially platelet. I have taken
Ruxolitinib
for 3 years, obviously, I have felt the intolerance on the platelet.
Now I take
Ruxolitinib
7.5mg/bid /day and interferon per several days. The hemogram was controlled lower than normal, especially platelet. I have taken
Ruxolitinib
for 3 years, obviously, I have felt the intolerance on the platelet.
merlisa
in
MPN Voice
3 years ago
Sodabread
Hi can anyone give me some information about how they felt starting on
Ruxolitinib
. My consultant wants to start me on this but I am not sure how I feel about it - so some for and against answers would be helpful.
Hi can anyone give me some information about how they felt starting on
Ruxolitinib
. My consultant wants to start me on this but I am not sure how I feel about it - so some for and against answers would be helpful.
Sodabread
in
MPN Voice
3 years ago
Moderna and third vaccine
He also checked my drugs and spent time checking
ruxolitinib
for contra indications. This is just my experience.
He also checked my drugs and spent time checking
ruxolitinib
for contra indications. This is just my experience.
DJK12
in
MPN Voice
3 years ago
Any IL-6 inhibitor or IL6 receptor inhibitor situation and Liver total protein issue
I was thinking, if
Ruxolitinib
can treat GVHT after transplantation, why can't other drugs be used for myelofibrosis? I don't have a suitable stem cell donor. I can only rely on conservative treatment for one year.
I was thinking, if
Ruxolitinib
can treat GVHT after transplantation, why can't other drugs be used for myelofibrosis? I don't have a suitable stem cell donor. I can only rely on conservative treatment for one year.
merlisa
in
MPN Voice
3 years ago
Rux vs Vaccine
The latter conversely did not differ significantly from controls, suggesting that the potentiality to mount adequate immune response is maintained in most MPN patients who were not receiving
ruxolitinib
.>> The image above shows R (Rux), N-R (No Rux), H (Healthy without MPN) antibody effects.
The latter conversely did not differ significantly from controls, suggesting that the potentiality to mount adequate immune response is maintained in most MPN patients who were not receiving
ruxolitinib
.>> The image above shows R (Rux), N-R (No Rux), H (Healthy without MPN) antibody effects.
EPguy
in
MPN Voice
3 years ago
Myelofibrosis worsened so going to start ruxolitinib
However I'm now eligible for
ruxolitinib
. I'm hoping this will have an affect on the mouth ulcers and tingling I get.
However I'm now eligible for
ruxolitinib
. I'm hoping this will have an affect on the mouth ulcers and tingling I get.
Scaredy_cat
in
MPN Voice
3 years ago
Targeted Therapies for Polycythemia Vera
Some of the reasons we see patients come off
ruxolitinib
for myelofibrosis after 3 years really do not apply to our patients with polycythemia vera.
Some of the reasons we see patients come off
ruxolitinib
for myelofibrosis after 3 years really do not apply to our patients with polycythemia vera.
Manouche
in
MPN Voice
3 years ago
Weight gain with ruxolitinib
I've been on
ruxolitinib
since November and my weight is creeping up. I have always eaten well and exercise alot but this change is getting me down. If anyone has any advice I'd really appreciate it, thanks all x
I've been on
ruxolitinib
since November and my weight is creeping up. I have always eaten well and exercise alot but this change is getting me down. If anyone has any advice I'd really appreciate it, thanks all x
soomoo
in
MPN Voice
3 years ago
Probiotics, MF and Ruxolitinib
However I found this interesting and wonder if the immunosuppressive effect of
Ruxolitinib
is to do with it changing the gut bacteria, which I understand plays a large part in the immune system. I thought others might find this interesting or be able to share more knowledge about it.
However I found this interesting and wonder if the immunosuppressive effect of
Ruxolitinib
is to do with it changing the gut bacteria, which I understand plays a large part in the immune system. I thought others might find this interesting or be able to share more knowledge about it.
Otterfield
in
MPN Voice
3 years ago
Introduction of myself, PMF, from China
Now, I accept the treatment of
Ruxolitinib
10mg bid + Short Acting Interferon 300UI/6 days, additional I also need Prednisone + Androgen + Calcitriol for eating
Ruxolitinib
and Interferon.
Now, I accept the treatment of
Ruxolitinib
10mg bid + Short Acting Interferon 300UI/6 days, additional I also need Prednisone + Androgen + Calcitriol for eating
Ruxolitinib
and Interferon.
merlisa
in
MPN Voice
3 years ago
RUXOLITINIB
Two weeks ago I was lucky enough to be accepted for the drug
Ruxolitinib
. Previously I was on Hydroxycarbamide which my body rejected and caused breathing problems.
Two weeks ago I was lucky enough to be accepted for the drug
Ruxolitinib
. Previously I was on Hydroxycarbamide which my body rejected and caused breathing problems.
Heather270240
in
MPN Voice
3 years ago
Ruxolitinib discontinuation in polycythemia vera:
« After discontinuation, only 4 patients (18 %) received subsequent cytoreductive therapy, including hydroxyurea in one patient and pegylated interferon α-2a in three patients »… « discontinuation of
ruxolitinib
in PV was associated with generally favorable outcomes.
« After discontinuation, only 4 patients (18 %) received subsequent cytoreductive therapy, including hydroxyurea in one patient and pegylated interferon α-2a in three patients »… « discontinuation of
ruxolitinib
in PV was associated with generally favorable outcomes.
Manouche
in
MPN Voice
3 years ago
Change of treatment!
I asked about
ruxolitinib
but I was told that this drug is not licensed in the UK. My question is, has anyone had adverse symptoms with anagrelide or interferon? And what were they.? I apologise for the long post but would appreciate your thoughts Thank you for being there xxx
I asked about
ruxolitinib
but I was told that this drug is not licensed in the UK. My question is, has anyone had adverse symptoms with anagrelide or interferon? And what were they.? I apologise for the long post but would appreciate your thoughts Thank you for being there xxx
Cokopops
in
MPN Voice
3 years ago
Transplant at age 68 or not
I've had myelofibrosis for about 30 years and been on
ruxolitinib
successfully for about 8 years. We have just moved to Scotland and my new consultant has laid it on the line that rux doesn't go on working for ever and my only other option is transplant.
I've had myelofibrosis for about 30 years and been on
ruxolitinib
successfully for about 8 years. We have just moved to Scotland and my new consultant has laid it on the line that rux doesn't go on working for ever and my only other option is transplant.
Bullace
in
MPN Voice
3 years ago
Limited UK Treatment
I saw some before and after photos of
ruxolitinib
cream on eyebrows (Googled). Even if I had eyebrows, that would be enough for me. This is not available in the UK. I contacted a US compound pharmacy that makes this after reading it in forum.
I saw some before and after photos of
ruxolitinib
cream on eyebrows (Googled). Even if I had eyebrows, that would be enough for me. This is not available in the UK. I contacted a US compound pharmacy that makes this after reading it in forum.
darkraven
in
Alopecia UK
3 years ago
Greater Understanding of PV, ET Drives Potential New Treatment Options
For example, a phase 2 study of
ruxolitinib
in combination with pegylated interferon alfa 2a (PEG-IFN alfa-2a) found the regimen was well tolerated, decreased JAK2 V617F allelic burden and symptoms, and resulted in remission for 10 of the 32 patients with PV deemed “almost entirely” intolerant or refractory
For example, a phase 2 study of
ruxolitinib
in combination with pegylated interferon alfa 2a (PEG-IFN alfa-2a) found the regimen was well tolerated, decreased JAK2 V617F allelic burden and symptoms, and resulted in remission for 10 of the 32 patients with PV deemed “almost entirely” intolerant or refractory
Manouche
in
MPN Voice
3 years ago
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