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Ruxolitinib
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Myelofibrosis life expectancy
I’m 55 female & have had Essential Thrombocythia /Rheumatoid Arthritis for 15 years now & been advised to go onto using
Ruxolitinib
as existing meds of Hydroxycarbonide/Methotrexate/ Dipyridamole/folic acid are not decreasing my platelets? Constantly high . Rarely under 800.000- 900,000.
I’m 55 female & have had Essential Thrombocythia /Rheumatoid Arthritis for 15 years now & been advised to go onto using
Ruxolitinib
as existing meds of Hydroxycarbonide/Methotrexate/ Dipyridamole/folic acid are not decreasing my platelets? Constantly high . Rarely under 800.000- 900,000.
Hidden
in
MPN Voice
6 years ago
Colchicine- is it safe to take it if you have post PV Myelofibrosis?
My husband’s gout has been well controlled by Allopurinol for three years but he’s had a flare up for three days. ( He has post Ploycythaemia Myelofibrosis treated with
Ruxolitinib
) . He’s been prescribed Colchicine 500mg ( one to be taken four times a day for three days) .
My husband’s gout has been well controlled by Allopurinol for three years but he’s had a flare up for three days. ( He has post Ploycythaemia Myelofibrosis treated with
Ruxolitinib
) . He’s been prescribed Colchicine 500mg ( one to be taken four times a day for three days) .
Fika500
in
MPN Voice
6 years ago
(4-Year) Follow-up of RESPONSE Trial, a Phase 3 Study Comparing Ruxolitinib with Best Available Therapy for Treatment of Polycythemia Vera
https://www.pvreporter.com/dr-jean-jacques-kiladjian-at-ash-2017-4-year-follow-up-on-response-trial-a-phase-3-study-comparing-
ruxolitinib
-with-best-available-therapy-for-treatment-of-polycythemia-vera/ Hope you find the interview informative. Best, David - PV Reporter
https://www.pvreporter.com/dr-jean-jacques-kiladjian-at-ash-2017-4-year-follow-up-on-response-trial-a-phase-3-study-comparing-
ruxolitinib
-with-best-available-therapy-for-treatment-of-polycythemia-vera/ Hope you find the interview informative. Best, David - PV Reporter
PVReporter
in
MPN Voice
6 years ago
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Lower dose
Hello all, Have any of you on
Ruxolitinib
been lowered from 10mg twice daily to 5mg twice daily? I'm wondering if there will be a not too favourable reaction.
Hello all, Have any of you on
Ruxolitinib
been lowered from 10mg twice daily to 5mg twice daily? I'm wondering if there will be a not too favourable reaction.
champ30
in
MPN Voice
6 years ago
My Spleen is no longer welcome!
well well....the only options that we have really are liver transplant and
Ruxolitinib
(apologies for the spelling) So I have approval for Rux, however they wont start me until after transplant - so back to square one really!
well well....the only options that we have really are liver transplant and
Ruxolitinib
(apologies for the spelling) So I have approval for Rux, however they wont start me until after transplant - so back to square one really!
Chelle_
in
MPN Voice
6 years ago
Ruxolitinib and nausea
Hi, I've been on
Ruxolitinib
for 11 days, for the first 9 days felt great, better than for ages, then yesterday morning was sick several times and had nausea all day, nausea again today and don't feel well. I'm so disappointed to have lost my feeling well!
Hi, I've been on
Ruxolitinib
for 11 days, for the first 9 days felt great, better than for ages, then yesterday morning was sick several times and had nausea all day, nausea again today and don't feel well. I'm so disappointed to have lost my feeling well!
francesb
in
MPN Voice
7 years ago
Ruxolitinib and weight gain
Hi, I'm just about to start
Ruxolitinib
and see that weight gain can be a side effect, some people reporting 2 stone or more. I know it sounds vain but I really want to avoid this if I can.
Hi, I'm just about to start
Ruxolitinib
and see that weight gain can be a side effect, some people reporting 2 stone or more. I know it sounds vain but I really want to avoid this if I can.
francesb
in
MPN Voice
7 years ago
flu jab
I have myelofibrosis and I spoke to my blood nurses I call him and he hadn't heard of the problem, I take 10mg of Jacobi or
ruxolitinib
each day and I'm wondering if anybody else has the symptoms Best wishes from Michael
I have myelofibrosis and I spoke to my blood nurses I call him and he hadn't heard of the problem, I take 10mg of Jacobi or
ruxolitinib
each day and I'm wondering if anybody else has the symptoms Best wishes from Michael
MichaelS
in
MPN Voice
7 years ago
Quick question
My husband was diagnosed with Myelofibrosis about a year ago and is on Hydro and
Ruxolitinib
. He has been doing very well on these drugs .At moment he is in hospital with severe diarrhea and really poorly. I am wondering if the drugs could cause this.
My husband was diagnosed with Myelofibrosis about a year ago and is on Hydro and
Ruxolitinib
. He has been doing very well on these drugs .At moment he is in hospital with severe diarrhea and really poorly. I am wondering if the drugs could cause this.
Marianjones54
in
MPN Voice
7 years ago
Ruxolitinib
I would be really grateful those of you taking
Ruxolitinib
could tell me the benefits and problems they've experienced as I may be offered it in a few weeks time. I put a lot of info in a reply (to jr3093) now realised it would've been better to put my question in a separate post!
I would be really grateful those of you taking
Ruxolitinib
could tell me the benefits and problems they've experienced as I may be offered it in a few weeks time. I put a lot of info in a reply (to jr3093) now realised it would've been better to put my question in a separate post!
Fika500
in
MPN Voice
7 years ago
All about me and my Myelofibrosis
About three years ago I was lucky enough to get the drug company to give me Jakavi (
Ruxolitinib
) on compassionate grounds. and WOW what a difference, No bone aches, no pruritus, and my spleen is normal sized again.
About three years ago I was lucky enough to get the drug company to give me Jakavi (
Ruxolitinib
) on compassionate grounds. and WOW what a difference, No bone aches, no pruritus, and my spleen is normal sized again.
PeterNB
in
MPN Voice
7 years ago
Just about to get a transfusion to see if it helps the fatigue.
I'm MF Jak2 + and ive been on
ruxolitinib
for nearly 3 months. Fatigue has been getting worse so Im having a blood transfusion. Thank you to the people on this site who shared their own experiences. It helped me make my own decision. It seemed worth a try.
I'm MF Jak2 + and ive been on
ruxolitinib
for nearly 3 months. Fatigue has been getting worse so Im having a blood transfusion. Thank you to the people on this site who shared their own experiences. It helped me make my own decision. It seemed worth a try.
Rachelthepotter
in
MPN Voice
7 years ago
Omeprazole and Ruxolitinib
Hi all I have recently been changing from Hadroxycarbomide to
Ruxolitinib
. I also take lots of other drugs including 'omeprazole'. The problem I have is that the omeprazole seems to be less and less effective now and my 'acid reflux' is happening more regular.
Hi all I have recently been changing from Hadroxycarbomide to
Ruxolitinib
. I also take lots of other drugs including 'omeprazole'. The problem I have is that the omeprazole seems to be less and less effective now and my 'acid reflux' is happening more regular.
dave117
in
MPN Voice
7 years ago
Minimal Residual Disease or Cure in MPNs? Rationales and perspectives on Combo Therapy with Interferon-alpha2 and Ruxolitinib
Cutting edge therapy for PV - MF patients who do not respond to Jakafi or Pegasys alone - http://bit.ly/2tBjHVs
Cutting edge therapy for PV - MF patients who do not respond to Jakafi or Pegasys alone - http://bit.ly/2tBjHVs
PVReporter
in
MPN Voice
7 years ago
Ruxolitinib or Interferon
Just got a a call from my lovely Haematologist to say she's got funding for
Ruxolitinib
for me on compassionate grounds . I know how expensive it is so am very grateful she has secured this for me. I just wondered if anyone has any experience of Rux. Also any info re: Rux v Interferon for PV .
Just got a a call from my lovely Haematologist to say she's got funding for
Ruxolitinib
for me on compassionate grounds . I know how expensive it is so am very grateful she has secured this for me. I just wondered if anyone has any experience of Rux. Also any info re: Rux v Interferon for PV .
Dianne-Guisborough
in
MPN Voice
7 years ago
MPN Sufferer
husband diagnosed with MPN possibly PV he is now coming of Pregabalin slowly with the hope very soon he will get
Ruxolitinib
. Coming off the Pregabalin he appears to be going backwards worse night sweats and itching.
husband diagnosed with MPN possibly PV he is now coming of Pregabalin slowly with the hope very soon he will get
Ruxolitinib
. Coming off the Pregabalin he appears to be going backwards worse night sweats and itching.
waddles22
in
MPN Voice
7 years ago
Back on an Old Friend
My learnéd Consultant has put me back on an old friend which I was taking prior to Transplant , that being
Ruxolitinib
. He is optimistic that it may help alleviate my GVHD in time.
My learnéd Consultant has put me back on an old friend which I was taking prior to Transplant , that being
Ruxolitinib
. He is optimistic that it may help alleviate my GVHD in time.
JediReject
in
MPN Voice
7 years ago
treatment refusal ruxolitinib
He has been told that he can't have
ruxolitinib
because he doesn't meet the prescribing criteria because he is low risk. The request for the drug will have to go to an individual patient funding request panel.
He has been told that he can't have
ruxolitinib
because he doesn't meet the prescribing criteria because he is low risk. The request for the drug will have to go to an individual patient funding request panel.
afonog
in
MPN Voice
7 years ago
Should I be asking for ruxolitinib?
My haematologist said the long term plan was to get me on
Ruxolitinib
and I'm wondering whether I should be pushing for it or just leaving it to his judgement.
My haematologist said the long term plan was to get me on
Ruxolitinib
and I'm wondering whether I should be pushing for it or just leaving it to his judgement.
Fika500
in
MPN Voice
7 years ago
Ruxolitinib for ET?
Is Rux approved for ET? I had to stop taking Hydrea due to developing vasculitis/erythema nodosum caused by the Hydrea. My doctor is now motivating to my medical insurance that I start Rux. I was under the impression that Rux is now phase 3 for ET and not yet approved?
Is Rux approved for ET? I had to stop taking Hydrea due to developing vasculitis/erythema nodosum caused by the Hydrea. My doctor is now motivating to my medical insurance that I start Rux. I was under the impression that Rux is now phase 3 for ET and not yet approved?
Lab-Rat
in
MPN Voice
7 years ago
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