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Jakavi
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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
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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
Hello this is Angela, hope everyone is doing the best they can with their health.
I wonder if anyone who has Myelofibrosis without the JAK2 mutation tried the drug JAKAFI?
I wonder if anyone who has Myelofibrosis without the JAK2 mutation tried the drug JAKAFI?
IlGod67
in
MPN Voice
8 years ago
BMB is next for me!
Getting bone marrow biopsy next week (have had a few in the past) to see what's up with my platelets, genes, and white blood count. Could mean a switch from Jakafi to a drug in trials for my MF. Bruising and slow coagulation is a factor, but feel good and have great new doc: Catriona Jamison at UC San
Getting bone marrow biopsy next week (have had a few in the past) to see what's up with my platelets, genes, and white blood count. Could mean a switch from Jakafi to a drug in trials for my MF. Bruising and slow coagulation is a factor, but feel good and have great new doc: Catriona Jamison at UC San
andrewschorr
in
MPN Voice
8 years ago
The Jackpot at last. Jakavi approved
My dilemma is that my Haem has asked me to continue my current dose of anagrelide (4mg per day) indefinitively and commence
Jakavi
(15mg per day). It all seems so counter intuitive.. If the
Jakavi
works my platelet count will be down to nothing in no time.
My dilemma is that my Haem has asked me to continue my current dose of anagrelide (4mg per day) indefinitively and commence
Jakavi
(15mg per day). It all seems so counter intuitive.. If the
Jakavi
works my platelet count will be down to nothing in no time.
hackett
in
MPN Voice
9 years ago
Newly diagnosed
I am a 63 year old woman in the United States and have been diagnosed with Myelofibrosis. Had a bone marrow biopsy and it is 70 to 90 percent compromised. I will be starting Jakafi on Tuesday, waiting for it to come in the mail from insurance company. I am extremely fatigued, lost 30 pounds
I am a 63 year old woman in the United States and have been diagnosed with Myelofibrosis. Had a bone marrow biopsy and it is 70 to 90 percent compromised. I will be starting Jakafi on Tuesday, waiting for it to come in the mail from insurance company. I am extremely fatigued, lost 30 pounds
Realtorlin
in
MPN Voice
9 years ago
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