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Experiences with
Ruxolitinib
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PV
I have been taking
Ruxolitinib
for 4 weeks. I wondered how other patients are coping with this medication,
I have been taking
Ruxolitinib
for 4 weeks. I wondered how other patients are coping with this medication,
MamPRV
in
MPN Voice
5 years ago
Was my Jakafi dosage lowered inappropriatelyand need to be raised?
I have stage 3 myelofibrosis, I was on 20mg of
Ruxolitinib
signed up for a study drug Navitoclax and the first thing a P.A did not a hematologist was lower my
ruxolitinib
to 10 mg cause my platelets went down.
I have stage 3 myelofibrosis, I was on 20mg of
Ruxolitinib
signed up for a study drug Navitoclax and the first thing a P.A did not a hematologist was lower my
ruxolitinib
to 10 mg cause my platelets went down.
Boriqua
in
MPN Voice
5 years ago
I was diagnosed with PV in 2016 and live in North Yorkshire
After a 18 months of weekly to 2 weekly venesections, trying but not having posituve results from anagrelide and interferon I am now well controlled on Warfarin and
Ruxolitinib
( because of a melanoma in the past I cannot take hydroxyurea).
After a 18 months of weekly to 2 weekly venesections, trying but not having posituve results from anagrelide and interferon I am now well controlled on Warfarin and
Ruxolitinib
( because of a melanoma in the past I cannot take hydroxyurea).
Dianne-Guisborough
in
MPN Voice
5 years ago
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Weight gain on Ruxolitinib
I’ve been taking
ruxolitinib
(40 mg each day) for 7 months since PV progressed to MF. I have more UTIs and weight gain. I wonder if other people experience these problems and how they can be overcome?
I’ve been taking
ruxolitinib
(40 mg each day) for 7 months since PV progressed to MF. I have more UTIs and weight gain. I wonder if other people experience these problems and how they can be overcome?
Patchworklife
in
MPN Voice
5 years ago
NEW HOPE FOR AML...
For example, in Myelofibrosis,
Ruxolitinib
(Jakafi) is used to suppress the 'Proliferation' of our blood cells, and hopefully thereby create some improvement in Quality of Life (QoL), and maybe even add a few years to our longevity (?)
For example, in Myelofibrosis,
Ruxolitinib
(Jakafi) is used to suppress the 'Proliferation' of our blood cells, and hopefully thereby create some improvement in Quality of Life (QoL), and maybe even add a few years to our longevity (?)
socrates_8
in
MPN Voice
5 years ago
Clinical trial
I am on
ruxolitinib
at the moment but my platelets keeping dropping. My oncologist put me forward for a clinical trial I went to London talked the very nice Dr. He gave me 2 literature books to read regarding the trial. I really don't know what to do. I'm thinking I don't want to go through this.
I am on
ruxolitinib
at the moment but my platelets keeping dropping. My oncologist put me forward for a clinical trial I went to London talked the very nice Dr. He gave me 2 literature books to read regarding the trial. I really don't know what to do. I'm thinking I don't want to go through this.
Ven61
in
MPN Voice
5 years ago
Researchers find a potential new combination therapy against a rare disease
These trials were conducted by Spanish researchers using a number of drugs in combination with
Ruxolitinib
. Best wishes Steve https://www.mpn-mate.com/forum/viewtopic.php?f=3&t=64
These trials were conducted by Spanish researchers using a number of drugs in combination with
Ruxolitinib
. Best wishes Steve https://www.mpn-mate.com/forum/viewtopic.php?f=3&t=64
socrates_8
in
MPN Voice
5 years ago
MPN Voice needs your feedback to support an application to the Scottish Medicines Consortium (SMC)
Ruxolitinib
(Jakavi) is not approved by NICE in England for PV.
Ruxolitinib
(Jakavi) is a treatment for PV patients who have failed or are intolerant of first line therapy with Hydroxycarbamide (Hydrea or Hydroxyurea).
Ruxolitinib
(Jakavi) is not approved by NICE in England for PV.
Ruxolitinib
(Jakavi) is a treatment for PV patients who have failed or are intolerant of first line therapy with Hydroxycarbamide (Hydrea or Hydroxyurea).
Mazcd
MPNVoice
in
MPN Voice
5 years ago
Potential New MF Drug
CPI-0610 Demonstrates Activity in Patients With Myelofibrosis After
Failure Post by socrates_8 » Tue Aug 20, 2019 7:43 am Morning everyone, thought some of you might find this of interest.
CPI-0610 Demonstrates Activity in Patients With Myelofibrosis After
Failure Post by socrates_8 » Tue Aug 20, 2019 7:43 am Morning everyone, thought some of you might find this of interest.
socrates_8
in
MPN Voice
5 years ago
Ruxolitinib plus Pegasys for MF: is anyone in the UK using this combination ?
Having had a sarcomatoid SCC likely triggered by
ruxolitinib
, and a haematologist v reluctant to reduce the rux and add some pegasys to maintain the good control of my MF without exacerbating the skin cancer risk , ( which does seem to me to be worth trying) is there anyone In the UK who is using
Having had a sarcomatoid SCC likely triggered by
ruxolitinib
, and a haematologist v reluctant to reduce the rux and add some pegasys to maintain the good control of my MF without exacerbating the skin cancer risk , ( which does seem to me to be worth trying) is there anyone In the UK who is using
Rachelthepotter
in
MPN Voice
5 years ago
Combining Pegasys and ruxolitinib (Jakafi) for MF: has anyone tried it?
I'm having a grim time at present, as the increased risk of aggressive skin cancers triggered by the
ruxolitinib
I’m taking ( was inc to 20mg bd at end December to help the fatigue ( it didn’t) ( now back to 15mg bd) haunts me.
I'm having a grim time at present, as the increased risk of aggressive skin cancers triggered by the
ruxolitinib
I’m taking ( was inc to 20mg bd at end December to help the fatigue ( it didn’t) ( now back to 15mg bd) haunts me.
Rachelthepotter
in
MPN Voice
5 years ago
A phase 2 study of ruxolitinib in combination with azacitidine in patients with myelofibrosis
Sounds very encouraging http://www.bloodjournal.org/content/132/16/1664
Sounds very encouraging http://www.bloodjournal.org/content/132/16/1664
Paul123456
in
MPN Voice
5 years ago
Ruxolitinib and UTIs
I wonder how other
Ruxolitinib
users suffering from UTIs cope with the problem and whether it’s possible to boost the immune system to help prevent infections?
I wonder how other
Ruxolitinib
users suffering from UTIs cope with the problem and whether it’s possible to boost the immune system to help prevent infections?
Patchworklife
in
MPN Voice
5 years ago
Ruxolitinib and aggressive squamous cell skin cancers.
I’d followed up the research that people here had pointed me to on the link between rux and aggressive SCCs and sent some on to him What I’d taken from the research was that if you had had a previous non melanoma skin cancer there was a significant risk of
ruxolitinib
triggering an aggressive SCC
I’d followed up the research that people here had pointed me to on the link between rux and aggressive SCCs and sent some on to him What I’d taken from the research was that if you had had a previous non melanoma skin cancer there was a significant risk of
ruxolitinib
triggering an aggressive SCC
Rachelthepotter
in
MPN Voice
5 years ago
The Force is Strong in This One
I'm struggling to put weight on but since I stopped
Ruxolitinib
many months ago my appetite fluctuates. Mind you I've always been a eat to live person. I tire easily but can do light jobs and potter in the garden.
I'm struggling to put weight on but since I stopped
Ruxolitinib
many months ago my appetite fluctuates. Mind you I've always been a eat to live person. I tire easily but can do light jobs and potter in the garden.
JediReject
in
MPN Voice
5 years ago
Systematic Review of Photobiomodulation for the Management of Oral Mucositis in Cancer Patients
Apparently, HU causes many of those complications, and
Ruxolitinib
can further exacerbate those complications too... There may be some general 'Conflicts of Interest' with this new Laser Light Therapy article, but I thought it was worth the read in any event...
Apparently, HU causes many of those complications, and
Ruxolitinib
can further exacerbate those complications too... There may be some general 'Conflicts of Interest' with this new Laser Light Therapy article, but I thought it was worth the read in any event...
socrates_8
in
MPN Voice
5 years ago
Prm-151 trial. Why so many patients you think discontinued therapy with prm-151 according to article?
https://www.ashclinicalnews.org/on-location/evaluating-prm-151-patients-myelofibrosis-resistant-intolerant-
ruxolitinib
/
https://www.ashclinicalnews.org/on-location/evaluating-prm-151-patients-myelofibrosis-resistant-intolerant-
ruxolitinib
/
Aneliv9
in
MPN Voice
5 years ago
AXSL MUTATION
I have been asking about
Ruxolitinib
with my Haematologist but I'm stuck on Hydroxycarbamide until I get worse and reach Intermediate 2.. Having received this today AXSL, I'm wondering if this will strengthen my case for
Ruxolitinib
..
I have been asking about
Ruxolitinib
with my Haematologist but I'm stuck on Hydroxycarbamide until I get worse and reach Intermediate 2.. Having received this today AXSL, I'm wondering if this will strengthen my case for
Ruxolitinib
..
pontygirl
in
MPN Voice
5 years ago
Haemo appointment
Haematology appointment this morning 🤔 first one since I stopped all the HU and
Ruxolitinib
. Interesting to see what my bloods are today. My platelets had previously come down to 540 so time will tell........ I get so nervous on appointment days - like a cat on a hot tin roof
Haematology appointment this morning 🤔 first one since I stopped all the HU and
Ruxolitinib
. Interesting to see what my bloods are today. My platelets had previously come down to 540 so time will tell........ I get so nervous on appointment days - like a cat on a hot tin roof
Graham7694
in
MPN Voice
5 years ago
Erythropoietin injections
My husband has post PV Myelofibrosis and is taking
Ruxolitinib
.
My husband has post PV Myelofibrosis and is taking
Ruxolitinib
.
Fika500
in
MPN Voice
6 years ago
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