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Hi Chris
On a personal side my
Jakavi
was reduced but that resulted in skin issues so it's been increased again. Take care buddy. Gary
On a personal side my
Jakavi
was reduced but that resulted in skin issues so it's been increased again. Take care buddy. Gary
crapaud
in
MPN Voice
7 years ago
Lowering of Jakavi dosage and eczema
My
Jakavi
was reduced from 10mg bid to 5mg bid 3 weeks ago. For the last 10 days my arms and legs have been covered with itchy red dry skin, my SCT doctor thinks it may be a form of eczema brought on by the reduction in
Jakavi
dosage. Anyone else experience this sort of thing?
My
Jakavi
was reduced from 10mg bid to 5mg bid 3 weeks ago. For the last 10 days my arms and legs have been covered with itchy red dry skin, my SCT doctor thinks it may be a form of eczema brought on by the reduction in
Jakavi
dosage. Anyone else experience this sort of thing?
crapaud
in
MPN Voice
7 years ago
Blood platelets still too high...?
Hey everyone... :) I hope all are happy and mostly well with their various MPNs etc... Just a quick question for anyone who might be able to shed some light. My diagnosis was changed from ET to Myelofibrosis (CALR+) in late December 2016, and I have been taking 20mg x2 per day of Jakafi (along w/ aspirin
Hey everyone... :) I hope all are happy and mostly well with their various MPNs etc... Just a quick question for anyone who might be able to shed some light. My diagnosis was changed from ET to Myelofibrosis (CALR+) in late December 2016, and I have been taking 20mg x2 per day of Jakafi (along w/ aspirin
socrates_8
in
MPN Voice
7 years ago
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Initial weight gains & Higher platelet counts on Jakafi???
Happy New Year fellow MPN-ers... :) Just curious if anyone else has had similar results in their initial journey with Ruxolitinib? It is only my third week (on Jakafi), and perhaps I am expecting too much too soon... I am sleeping better, my itching seems to have abated, and I am getting the occasional
Happy New Year fellow MPN-ers... :) Just curious if anyone else has had similar results in their initial journey with Ruxolitinib? It is only my third week (on Jakafi), and perhaps I am expecting too much too soon... I am sleeping better, my itching seems to have abated, and I am getting the occasional
socrates_8
in
MPN Voice
7 years ago
ASAP/ALAP counts - what constitutes numbers to be worried about ?
After 2 months of corticoids I have been switched to
Jakavi
- progressively increased from 2x5mg to 2x15mg per day. The Doctor has explained to me they are following my ASAT and ALAT counts to monitor progress; these counts are currently at 139 and 443.
After 2 months of corticoids I have been switched to
Jakavi
- progressively increased from 2x5mg to 2x15mg per day. The Doctor has explained to me they are following my ASAT and ALAT counts to monitor progress; these counts are currently at 139 and 443.
crapaud
in
MPN Voice
8 years ago
Extremely sensitive finger tips due to chronic gvhd and cortisone
For information, the corticoid treatment isn't working well enough and since last week
Jakavi
has been started in an attempt to improve things - unfortunately the cortisone has to be used for a while longer to : i)wean me off progressively Ii)wait to ensure that the
Jakavi
improves things and i don't
For information, the corticoid treatment isn't working well enough and since last week
Jakavi
has been started in an attempt to improve things - unfortunately the cortisone has to be used for a while longer to : i)wean me off progressively Ii)wait to ensure that the
Jakavi
improves things and i don't
crapaud
in
MPN Voice
8 years ago
First Time MF Poster
I initially started on hydroxyurea and prednisolone, but after four months Jakafi (
Jakavi
in Australia) became available on the pharmaceutical benefits scheme and I changed to that drug (20mg. twice daily) which I have been taking for eight months.
I initially started on hydroxyurea and prednisolone, but after four months Jakafi (
Jakavi
in Australia) became available on the pharmaceutical benefits scheme and I changed to that drug (20mg. twice daily) which I have been taking for eight months.
47Robert
in
MPN Voice
8 years ago
How to get Jakafi paid for when insurance denies it.
Does anyone every get denied Jakafi from their insurance company and eventually get it approved? Does anyone not ever get it approved? We have been denied twice but our dr office says everyone ends up getting it. I am so afraid my husband won't be able to get the jakafi and he is so sick. Please, any
Does anyone every get denied Jakafi from their insurance company and eventually get it approved? Does anyone not ever get it approved? We have been denied twice but our dr office says everyone ends up getting it. I am so afraid my husband won't be able to get the jakafi and he is so sick. Please, any
2hankers2
in
MPN Voice
8 years ago
I'm new at this website
I have had Essential Thrombocythemia for 24 years. With increased doses of Hydroxeurea I was becoming anemic. The doctor switched me to Anagrelide which he said only targets the platelets, but the red cells did not come back. So, he did a bone marrow biopsy a year ago and discovered I now have Myelofibrosis
I have had Essential Thrombocythemia for 24 years. With increased doses of Hydroxeurea I was becoming anemic. The doctor switched me to Anagrelide which he said only targets the platelets, but the red cells did not come back. So, he did a bone marrow biopsy a year ago and discovered I now have Myelofibrosis
zfatherhen
in
Fight MPN
8 years ago
Jplsuper
Hi I'm Jplsuper and I have been fighting MPN since 1988. The best I have felt has been taking Jakafi. All other meds caused fever, bone pain, and fatigue. It is interesting to finally meet and see people talking about our disease. I've waited a long time.
Hi I'm Jplsuper and I have been fighting MPN since 1988. The best I have felt has been taking Jakafi. All other meds caused fever, bone pain, and fatigue. It is interesting to finally meet and see people talking about our disease. I've waited a long time.
Jplsuper
in
Fight MPN
8 years ago
Anyone heard of Promedior?
I've been researching clinical trials for MPNs and I came across a drug trial for PRM-151. It's currently in phase II ( looking at safety & efficacy in a larger population) after promising Phase I results. It's some sort of biologic (protein?) that is indicated for fibrosis in the marrow..they are looking
I've been researching clinical trials for MPNs and I came across a drug trial for PRM-151. It's currently in phase II ( looking at safety & efficacy in a larger population) after promising Phase I results. It's some sort of biologic (protein?) that is indicated for fibrosis in the marrow..they are looking
Jennifer1974
in
MPN Voice
8 years ago
Ruxolitinib & GvHD
I've been on higher doses of cortisone the last month or so to get over a chronic GvHD in my liver, after initial improvement things have regressed, my consultant is seriously considering replacing the corticoid by
Jakavi
(Ruxolitinib).
I've been on higher doses of cortisone the last month or so to get over a chronic GvHD in my liver, after initial improvement things have regressed, my consultant is seriously considering replacing the corticoid by
Jakavi
(Ruxolitinib).
crapaud
in
MPN Voice
8 years ago
Just started Pegeses/Interferon
Hello all, I just started this drug Pegeses /Interferon, also taking 5 mg of Jakafi twice a day. I have MF 2-3, JAK+. Also transfusion dependent, platelets are low also, I am very nervous. Any insight would be much appreciated. Thinking of all who are in this fight and wishing you all the best
Hello all, I just started this drug Pegeses /Interferon, also taking 5 mg of Jakafi twice a day. I have MF 2-3, JAK+. Also transfusion dependent, platelets are low also, I am very nervous. Any insight would be much appreciated. Thinking of all who are in this fight and wishing you all the best
Realtorlin
in
MPN Voice
8 years ago
SCT go ahead
Hi MPN friends, I just wanted to let you know that I will be starting the process of a stem cell transplant next weds 22 June. I live in France and will be having the treatment in Montpellier. I have a femal German donor 10/10 match. Words cannot express my gratitude at the gift of her stem cells. At
Hi MPN friends, I just wanted to let you know that I will be starting the process of a stem cell transplant next weds 22 June. I live in France and will be having the treatment in Montpellier. I have a femal German donor 10/10 match. Words cannot express my gratitude at the gift of her stem cells. At
Jane65
in
MPN Voice
8 years ago
Is There a Connection Between MPN Treatment and Skin Cancer?
In this Ask the Expert segment, Patient Power community member, Peggy, wrote, “How strong of a connection is there between long-term use of Jakafi and non-melanoma skin cancer? Should a patient quit taking medication?” Dr. Naveen Pemmarju of MD Anderson Cancer Center responds with a discussion of a
In this Ask the Expert segment, Patient Power community member, Peggy, wrote, “How strong of a connection is there between long-term use of Jakafi and non-melanoma skin cancer? Should a patient quit taking medication?” Dr. Naveen Pemmarju of MD Anderson Cancer Center responds with a discussion of a
mcints
in
Fight MPN
8 years ago
Jakafi
This is being tested at MD Anderson to be used to alleviate CLL symptoms like fatigue and enlarged nodes. Results in 2018. Me and my football players neck would love this. Has any ever tries this? Virginia
This is being tested at MD Anderson to be used to alleviate CLL symptoms like fatigue and enlarged nodes. Results in 2018. Me and my football players neck would love this. Has any ever tries this? Virginia
virdieblue
in
CLL Support
8 years ago
NICE Final guidance: Myelofibrosis - ruxolitinib (review of TA289) [831]
Ruxolitinib (
Jakavi
) is recommended as a possible treatment for treating disease-related splenomegaly or symptoms in adults with primary myelofibrosis (also known as chronic idiopathic myelofibrosis), post polycythaemia vera myelofibrosis or post essential thrombocythaemia myelofibrosis only if
Ruxolitinib (
Jakavi
) is recommended as a possible treatment for treating disease-related splenomegaly or symptoms in adults with primary myelofibrosis (also known as chronic idiopathic myelofibrosis), post polycythaemia vera myelofibrosis or post essential thrombocythaemia myelofibrosis only if
Mazcd
MPNVoice
in
MPN Voice
8 years ago
Hgb and transfusions
I have been on Jakafi since the end of September. I am now needing blood transfusions every 3 weeks, is there anything I can do to keep my hgb up for a longer length of time?
I have been on Jakafi since the end of September. I am now needing blood transfusions every 3 weeks, is there anything I can do to keep my hgb up for a longer length of time?
Realtorlin
in
MPN Voice
8 years ago
What the BMB Result Said
I met with my CLL and MPN experts this past week to learn the results of my bone marrow biopsy. My myelofibrosis is still there but not aggressive. Apparently 10mg of Jakafi 2x a day helps hold it steady. Genetic factors are ok,. My CLL is there too but after 19 years not doing much. Only issue is platelets
I met with my CLL and MPN experts this past week to learn the results of my bone marrow biopsy. My myelofibrosis is still there but not aggressive. Apparently 10mg of Jakafi 2x a day helps hold it steady. Genetic factors are ok,. My CLL is there too but after 19 years not doing much. Only issue is platelets
andrewschorr
in
CLL Support
8 years ago
Here's what the BMB said
I met with my CLL and MPN experts this past week to learn the results of my bone marrow biopsy. My myelofibrosis is still there but not aggressive. Apparently 10mg of Jakafi 2x a day helps hold it steady. Genetic factors are ok,. My CLL is there too but after 19 years not doing much. Only issue is platelets
I met with my CLL and MPN experts this past week to learn the results of my bone marrow biopsy. My myelofibrosis is still there but not aggressive. Apparently 10mg of Jakafi 2x a day helps hold it steady. Genetic factors are ok,. My CLL is there too but after 19 years not doing much. Only issue is platelets
andrewschorr
in
MPN Voice
8 years ago
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