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Experiences with
Ruxolitinib
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Ruxolitinib and side effects.
Have now been taking
Ruxolitinib
for four weeks and have noticed my concentration is improving , my rash has gone and the itching is not so bad . On the downside the headaches and dizziness are worse , have fallen a few times and with osteoporosis its quite worrying .
Have now been taking
Ruxolitinib
for four weeks and have noticed my concentration is improving , my rash has gone and the itching is not so bad . On the downside the headaches and dizziness are worse , have fallen a few times and with osteoporosis its quite worrying .
maestromaverick
in
MPN Voice
11 years ago
Am I eating too much or is it a side effect of there Ruxo?
So why, after 16 months on
ruxolitinib
am I getting a "middle." Too much beer? What is your experience?
So why, after 16 months on
ruxolitinib
am I getting a "middle." Too much beer? What is your experience?
andrewschorr
in
MPN Voice
11 years ago
Ruxolitinib Relief Trial.
Was unblinded today to find out I'd been taking my normal Hydroxy for last 24 weeks and from today will be taking
Ruxolitinib
. Just hope I get to feel even a little bit better .
Was unblinded today to find out I'd been taking my normal Hydroxy for last 24 weeks and from today will be taking
Ruxolitinib
. Just hope I get to feel even a little bit better .
maestromaverick
in
MPN Voice
11 years ago
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Just wondering if anyone has suffered with shingles since they have been on Ruxolitinib. I was diagnosed with MF 7 years ago.
I have been on Ruxo for 10 months which has been marvellous and has reduced my spleen by 50%, but still low hg and have started to itch again. Shingles appeared last week so am now taking 800mg 5 times a day of Aciclovir for 7 days. Have stopped the Ruxolitinid for a few days as one of the side effects
I have been on Ruxo for 10 months which has been marvellous and has reduced my spleen by 50%, but still low hg and have started to itch again. Shingles appeared last week so am now taking 800mg 5 times a day of Aciclovir for 7 days. Have stopped the Ruxolitinid for a few days as one of the side effects
October
in
MPN Voice
11 years ago
Info on my Myelofibrosis.
Hi everybody, Thank you all for your great response, I went to see my haemo yesterday, she was pleased with blood count, and said she was pleased with the size of my spleen. although it is still large, it is not as large as it was before I started on trial with
ruxolitinib
20mg .
Hi everybody, Thank you all for your great response, I went to see my haemo yesterday, she was pleased with blood count, and said she was pleased with the size of my spleen. although it is still large, it is not as large as it was before I started on trial with
ruxolitinib
20mg .
bernie62
in
MPN Voice
11 years ago
Why is there so little interest in the trial drug ruxolitinib by you out there. Iv been on it for weeks and my whole world has changed
Get in touch if you are interested ,I'm no longer needing venesection And my energy levels are really good,my team at hospital are pleased . I'm a very active woman..busy life,,
Get in touch if you are interested ,I'm no longer needing venesection And my energy levels are really good,my team at hospital are pleased . I'm a very active woman..busy life,,
Twinkly
in
MPN Voice
11 years ago
Sanofi discontinues clinical development of investigational JAK2 agent Fedratinib (SAR302503)
wp-content/uploads/2013/11/press-release-Sanofi-re-Fedratinib.pdf Fedratinib is a novel, investigational JAK2 inhibitor that was under development for the treatment of the three main types of MPNs (myeloproliferative neoplasms): primary myelofibrosis (including those patients previously treated with
Ruxolitinib
wp-content/uploads/2013/11/press-release-Sanofi-re-Fedratinib.pdf Fedratinib is a novel, investigational JAK2 inhibitor that was under development for the treatment of the three main types of MPNs (myeloproliferative neoplasms): primary myelofibrosis (including those patients previously treated with
Ruxolitinib
Mazcd
MPNVoice
in
MPN Voice
11 years ago
Ruxolitinib trial
I've been on
Ruxolitinib
Relief trial now for nine weeks . This morning got a call from the research nurse . I've got to recon sent due to new information . Anyone know what this information is . Not worried but a little troubled . He is sending me a new info pack but its made me a bit nervous .
I've been on
Ruxolitinib
Relief trial now for nine weeks . This morning got a call from the research nurse . I've got to recon sent due to new information . Anyone know what this information is . Not worried but a little troubled . He is sending me a new info pack but its made me a bit nervous .
maestromaverick
in
MPN Voice
11 years ago
Ruxolitinib For 5 Months Now With PV
Hi. I posted a while back when I started this drug. I have been lucky to get full funding. Yesterday I went to clinic and for the first time all blood results were 'normal'. Due to my youngish age (40) and previous history of nasty clots I sometimes have a pint off just to be safe. I have continued to
Hi. I posted a while back when I started this drug. I have been lucky to get full funding. Yesterday I went to clinic and for the first time all blood results were 'normal'. Due to my youngish age (40) and previous history of nasty clots I sometimes have a pint off just to be safe. I have continued to
nj4291
in
MPN Voice
11 years ago
Ruxolitinib (Jakavi) change to packaging
Novartis Pharmaceuticals UK Limited have informed MPD Voice that as of Friday 16th August 2013, Jakavi (
Ruxolitinib
) tablets will be packaged in blister packs, the formulation of the tablets will remain the same, it is just the packaging that has changed.
Novartis Pharmaceuticals UK Limited have informed MPD Voice that as of Friday 16th August 2013, Jakavi (
Ruxolitinib
) tablets will be packaged in blister packs, the formulation of the tablets will remain the same, it is just the packaging that has changed.
Mazcd
MPNVoice
in
MPN Voice
11 years ago
Ruxolitinib Relief Trial .
Hi all , just to let you know I started on the trial last Thursday ( 8-8-13 ) and so far have felt no better . But its early days and won't know for sixteen weeks what I'm taking . The trial is at Pilgrim hospital Boston under the supervision of Dr Final I . Will try to give updates of progress .
Hi all , just to let you know I started on the trial last Thursday ( 8-8-13 ) and so far have felt no better . But its early days and won't know for sixteen weeks what I'm taking . The trial is at Pilgrim hospital Boston under the supervision of Dr Final I . Will try to give updates of progress .
maestromaverick
in
MPN Voice
11 years ago
Ruxolitinib
I have been lucky and got funding for
Ruxolitinib
. Now 10 weeks in I can say the drug hasn't really given me any side affects. Red cells now stable, platelets went high but now seem on the decent to a normal level.
I have been lucky and got funding for
Ruxolitinib
. Now 10 weeks in I can say the drug hasn't really given me any side affects. Red cells now stable, platelets went high but now seem on the decent to a normal level.
nj4291
in
MPN Voice
11 years ago
Is it morally right to use people as human guinea pigs. . . . .
I was mulling over the events leading up to NICE's recent rejection of
Ruxolitinib
for NHS use in the UK after months of extensive trialling and evidence gathering both here and previously in the US.
I was mulling over the events leading up to NICE's recent rejection of
Ruxolitinib
for NHS use in the UK after months of extensive trialling and evidence gathering both here and previously in the US.
JediReject
in
MPN Voice
11 years ago
Ruxolitinib trial . I'm so unsure.
My haemotologist has asked me to consider being put forward for a trial of
ruxolitinib
. I'm very unsure about this and quite scared to be honest . Has anyone else been on a trial of this drug . Any help would be appreciated . I didn't think NICE had sanctioned the drug .
My haemotologist has asked me to consider being put forward for a trial of
ruxolitinib
. I'm very unsure about this and quite scared to be honest . Has anyone else been on a trial of this drug . Any help would be appreciated . I didn't think NICE had sanctioned the drug .
maestromaverick
in
MPN Voice
11 years ago
MPDlife newsletter - March edition
Articles include: NICE recommendations for
Ruxolitinib
– latest news on the preliminary decision taken by NICE (the National Institute for Health and Clinical Excellence) not to recommend the use of
Ruxolitinib
for treating disease related splenomegaly or symptoms in adults with MF Update on UKOSS
Articles include: NICE recommendations for
Ruxolitinib
– latest news on the preliminary decision taken by NICE (the National Institute for Health and Clinical Excellence) not to recommend the use of
Ruxolitinib
for treating disease related splenomegaly or symptoms in adults with MF Update on UKOSS
Mazcd
MPNVoice
in
MPN Voice
11 years ago
Eire
I was diagnosed with MF 4 years ago and am now on a Clinical Trial taking
Ruxolitinib
(15mg in the morning and 15mg in the evening) I also take Panobinistat 25mg 3 days a week every other week!!
I was diagnosed with MF 4 years ago and am now on a Clinical Trial taking
Ruxolitinib
(15mg in the morning and 15mg in the evening) I also take Panobinistat 25mg 3 days a week every other week!!
eire
in
MPN Voice
11 years ago
Ruxolitinib as a treatment for Myelofibrosis (MF) – NICE draft guidance - UPDATE
Further to the NICE draft guidance not recommending
Ruxolitinib
(Jakavi, Novartis), for the treatment of disease-related splenomegaly (enlarged spleen) or symptoms in adults with primary myelofibrosis, or myelofibrosis secondary to polycythaemia vera or essential thrombocythaemia.
Further to the NICE draft guidance not recommending
Ruxolitinib
(Jakavi, Novartis), for the treatment of disease-related splenomegaly (enlarged spleen) or symptoms in adults with primary myelofibrosis, or myelofibrosis secondary to polycythaemia vera or essential thrombocythaemia.
Mazcd
MPNVoice
in
MPN Voice
11 years ago
Starting interferon soon - can anyone share their experiences please?
I am now officially part of the MAJIC trial but was allocated best available therapy rather than
ruxolitinib
. However, because I am suffering horrendous mouth ulcers while taking hydroxycarbamide, I am going to be taking interferon as from 14th February.
I am now officially part of the MAJIC trial but was allocated best available therapy rather than
ruxolitinib
. However, because I am suffering horrendous mouth ulcers while taking hydroxycarbamide, I am going to be taking interferon as from 14th February.
Jo_L
in
MPN Voice
12 years ago
Can any forum member give me any information on query below, it would be much appreciated. Thank you. Johnj
The drug being tested is
Ruxolitinib
. Does any forum members have experience of this drug? Over the period 13years I have been on Hydroxycarbamide, Anagrelide and Aspirin in various permutations I am no longer on aspirin due to stomach bleed. Presently on a combination of Hyd. and Anagrelide
The drug being tested is
Ruxolitinib
. Does any forum members have experience of this drug? Over the period 13years I have been on Hydroxycarbamide, Anagrelide and Aspirin in various permutations I am no longer on aspirin due to stomach bleed. Presently on a combination of Hyd. and Anagrelide
Johnj
in
MPN Voice
12 years ago
MAJIC (Ruxolitinib) Trial?
I would be very interested to know if anyone has used
Ruxolitinib
and what their experience of it has been like. I don't really want to do the 'frying pan, fire' thing if I can help it! Thanks in advance, Jo :-)
I would be very interested to know if anyone has used
Ruxolitinib
and what their experience of it has been like. I don't really want to do the 'frying pan, fire' thing if I can help it! Thanks in advance, Jo :-)
Jo_L
in
MPN Voice
12 years ago
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