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Jakavi
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Third clinic visit, third different consultant
I've had my third clinic visit in six months and seen a the third different consultant and got a third opinion on starting medication for my PV! The first visit at the end of last year to seen my newly allocated consultant for the first time since the pandemic and we discussed the symptoms which I've
I've had my third clinic visit in six months and seen a the third different consultant and got a third opinion on starting medication for my PV! The first visit at the end of last year to seen my newly allocated consultant for the first time since the pandemic and we discussed the symptoms which I've
Transporter
in
MPN Voice
1 year ago
FDA Issues Complete Response Letter for Ruxolitinib Extended-Release Tablets
The Food and Drug Administration (FDA) has issued a Complete Response Letter (CRL) to Incyte regarding the New Drug Application (NDA) for ruxolitinib extended-release (XR) tablets for once-daily use in the treatment of certain types of myelofibrosis, polycythemia vera, and graft-vs-host disease (GVHD
The Food and Drug Administration (FDA) has issued a Complete Response Letter (CRL) to Incyte regarding the New Drug Application (NDA) for ruxolitinib extended-release (XR) tablets for once-daily use in the treatment of certain types of myelofibrosis, polycythemia vera, and graft-vs-host disease (GVHD
PhysAssist
in
MPN Voice
1 year ago
Treating leukocytosis in PV
I was diagnosed with PV in 2015 and I am JAK2 positive. I've been on Jakafi for about six months, and my current dosage of 10 mg/day seems to be doing a good job of controlling my HCT, HGB, and PLT numbers. However, my WBC numbers are consistently high, running at 19-20 K/uL. I understand that the literature
I was diagnosed with PV in 2015 and I am JAK2 positive. I've been on Jakafi for about six months, and my current dosage of 10 mg/day seems to be doing a good job of controlling my HCT, HGB, and PLT numbers. However, my WBC numbers are consistently high, running at 19-20 K/uL. I understand that the literature
sbs_patient
in
MPN Voice
1 year ago
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jackafi and and exhaustion
Hi Everyone, I switched from Besremi 50 mcg every two weeks to jackafi 5 mg bid. I have been on Jakafi 17 days and I am exhausted. I have my blood work tomorrow. I did not experience this with Besremi. Has anyone else experienced with Jackafi? Thanks in advance! Jeanie
Hi Everyone, I switched from Besremi 50 mcg every two weeks to jackafi 5 mg bid. I have been on Jakafi 17 days and I am exhausted. I have my blood work tomorrow. I did not experience this with Besremi. Has anyone else experienced with Jackafi? Thanks in advance! Jeanie
JeanieRN
in
MPN Voice
1 year ago
Weight gain on Jakafi ?
Hi, I was diagnosed Jak2 gene last year April (PV) and didn’t tolerate hydrea nor was it having any effect… Now progressed to 20mg Jakafi and a side effect (I was told) can be weight gain… At first no gain but I did notice getting a more pronounced sweet tooth after a month on 20mg ☺️. My GP said
Hi, I was diagnosed Jak2 gene last year April (PV) and didn’t tolerate hydrea nor was it having any effect… Now progressed to 20mg Jakafi and a side effect (I was told) can be weight gain… At first no gain but I did notice getting a more pronounced sweet tooth after a month on 20mg ☺️. My GP said
Anouchka
in
MPN Voice
1 year ago
Changing from Hydroxycarbamide to Jakavi
Main symptom for me is high fatigue.On pretty much Maximum dose and platelets still rising so my Consultant is looking to change my treatment to
Jakavi
. Be grateful for any advice on any problems with this change and whether
Jakavi
will be an improvement, especially with the fatigue issues.
Main symptom for me is high fatigue.On pretty much Maximum dose and platelets still rising so my Consultant is looking to change my treatment to
Jakavi
. Be grateful for any advice on any problems with this change and whether
Jakavi
will be an improvement, especially with the fatigue issues.
the_black_pig
in
MPN Voice
2 years ago
Besremi Titration Questions
I am 50yo diagnosed with PV/JAK2+ since 2018. I went through HU and then Jakafi before MPN specialist at Johns Hopkins recommended switching to Besremi for longer term complete blood response. I started Besremi titration Dec 21, 2022 at 100mcg. I have been increasing 50mcg every 2 weeks after CBC checks
I am 50yo diagnosed with PV/JAK2+ since 2018. I went through HU and then Jakafi before MPN specialist at Johns Hopkins recommended switching to Besremi for longer term complete blood response. I started Besremi titration Dec 21, 2022 at 100mcg. I have been increasing 50mcg every 2 weeks after CBC checks
RyanCB
in
MPN Voice
1 year ago
Inflamed Thigh and Glute Muscles
The
Jakavi
has significantly reduced the shortness of breath when exercising however the discomfort in the thighs mainly has continued. Clopidogrel has eased this condition slightly but it is still a problem.
The
Jakavi
has significantly reduced the shortness of breath when exercising however the discomfort in the thighs mainly has continued. Clopidogrel has eased this condition slightly but it is still a problem.
TimGS
in
MPN Voice
2 years ago
Hair Loss on Hydrea
I too loss lots of hair while taking Hydrea, then Anagrelide, and finally Jakafi. After starting to an MPN Specialist almost 2 yrs ago & switching to Pegasys, my hair is coming back in. My hair dresser is amazed at how much regrowth I’ve had. It’s still fairly thin on top, but slowly filling back in.
I too loss lots of hair while taking Hydrea, then Anagrelide, and finally Jakafi. After starting to an MPN Specialist almost 2 yrs ago & switching to Pegasys, my hair is coming back in. My hair dresser is amazed at how much regrowth I’ve had. It’s still fairly thin on top, but slowly filling back in.
Golfersmom
in
MPN Voice
1 year ago
jakafi, PV and retinal tears and detachment
in May I had a small stroke and the same day a retinal detachment. I was released from hospital 3 days later directly to an eye surgeon to repair my eye. I developed rapidly growing cataracts as a resulting complication. Last month I had surgery to remove cataracts in both eyes and now am having almost
in May I had a small stroke and the same day a retinal detachment. I was released from hospital 3 days later directly to an eye surgeon to repair my eye. I developed rapidly growing cataracts as a resulting complication. Last month I had surgery to remove cataracts in both eyes and now am having almost
DDSmiley63
in
Fight MPN
1 year ago
On goin results on bomedemstat (LSD1 Inhibitor)
Hi All, I have been part of this great group for the last year or so, and although I wish none of us were here, I’m glad to have found an online community that shares the same concerns as myself. I’m 37 years old now and I was diagnosed with ET in 2009 when I was 24, so it was kind of a shock, but
Hi All, I have been part of this great group for the last year or so, and although I wish none of us were here, I’m glad to have found an online community that shares the same concerns as myself. I’m 37 years old now and I was diagnosed with ET in 2009 when I was 24, so it was kind of a shock, but
jafar09
in
MPN Voice
2 years ago
Withdrawal from Jakafi
I've been on Jakafi for about two months now, and I'm afraid that it doesn't seem to be working out for me. For the first six weeks, everything looked good: WBC and PLT in normal range and stable, RBC, HCT and HGB steadily declining but still only slightly less than normal. Because of the decline,
I've been on Jakafi for about two months now, and I'm afraid that it doesn't seem to be working out for me. For the first six weeks, everything looked good: WBC and PLT in normal range and stable, RBC, HCT and HGB steadily declining but still only slightly less than normal. Because of the decline,
sbs_patient
in
MPN Voice
2 years ago
What Happens When you go off Jakafi
I fell Friday night on my knee and beinh on blood thinner, the hematoma under my knee was huge. I called the EMT’s who transported me to ER by ambulance who checked me in Hospital Saturday, Very painful and swollen and hospital is attempting to find Rehab Center for me, HOWEVER, no Rehab Center won
I fell Friday night on my knee and beinh on blood thinner, the hematoma under my knee was huge. I called the EMT’s who transported me to ER by ambulance who checked me in Hospital Saturday, Very painful and swollen and hospital is attempting to find Rehab Center for me, HOWEVER, no Rehab Center won
Buggerbear
in
MPN Voice
2 years ago
Ruxolitinib and urinary tract infections
I've been on Jakafi for a couple of months and am starting to see indications of a possible bladder infection. I understand that UTIs are a reported side effect of this medication. I found a posting on this topic from a few years ago and was wondering if anyone else has been having this problem.
I've been on Jakafi for a couple of months and am starting to see indications of a possible bladder infection. I understand that UTIs are a reported side effect of this medication. I found a posting on this topic from a few years ago and was wondering if anyone else has been having this problem.
sbs_patient
in
MPN Voice
2 years ago
Cutting up Jakafi pills?
I was wondering if anyone knows whether these pills can be cut when adjusting dosage. I've been told to reduce my initial 10 mg twice a day by taking the pills twice a day MWF and once a day on other days. This is a reduction of approximately 30%, going from 140 mg/week to 100. This is fine, but it might
I was wondering if anyone knows whether these pills can be cut when adjusting dosage. I've been told to reduce my initial 10 mg twice a day by taking the pills twice a day MWF and once a day on other days. This is a reduction of approximately 30%, going from 140 mg/week to 100. This is fine, but it might
sbs_patient
in
MPN Voice
2 years ago
Ruxolitinib and NSAIDs
Would anyone care to comment on the Jakafi label warnings against using NSAIDs? There is reportedly an increased risk of bleeding. If this is really the case, I guess I'm limited to acetaminophen for pain management.
Would anyone care to comment on the Jakafi label warnings against using NSAIDs? There is reportedly an increased risk of bleeding. If this is really the case, I guess I'm limited to acetaminophen for pain management.
sbs_patient
in
MPN Voice
2 years ago
Sepsis and Covid
I don't know if this is the after effects of the Sepsis, the MF blood tests came back OK 3 weeks ago, although I was taken off
Jakavi
while being treated for the Sepsis and Covid ( which only seemed to last for a few days - just a cough ) . Anyone had any similar experience.
I don't know if this is the after effects of the Sepsis, the MF blood tests came back OK 3 weeks ago, although I was taken off
Jakavi
while being treated for the Sepsis and Covid ( which only seemed to last for a few days - just a cough ) . Anyone had any similar experience.
Andrew8
in
MPN Voice
2 years ago
combo Jakafi and Pegasys
i am just stated the combo treatment of Jakafi 20mg twice perday + Pegasys 135mcg weekly for PV and it success to reduce my PLT from 1.2mi to 300k; HCT from 47 to 41,3; WBC from 27 to 16 and HGB from 18 to 14. does anyone with same treatment can share their experience with this combo...? thanks
i am just stated the combo treatment of Jakafi 20mg twice perday + Pegasys 135mcg weekly for PV and it success to reduce my PLT from 1.2mi to 300k; HCT from 47 to 41,3; WBC from 27 to 16 and HGB from 18 to 14. does anyone with same treatment can share their experience with this combo...? thanks
william-Indo
in
MPN Voice
2 years ago
Jakavi and Paxlovid interaction
Jakavi
and Paxlovid interaction I have been trying unsuccessfully to find information online to my question. Does anybody know if a patient currently taking Jakafi can be prescribed Paxlovid in case of a Covid infection? My husband had intermediate Myelofibrosis.
Jakavi
and Paxlovid interaction I have been trying unsuccessfully to find information online to my question. Does anybody know if a patient currently taking Jakafi can be prescribed Paxlovid in case of a Covid infection? My husband had intermediate Myelofibrosis.
Ticotopia
in
MPN Voice
2 years ago
Jakafi
Hi all, I was diagnosed in jan 22. My platelets were over 1100. I was immediately put on hydroxyurea and phlebotomy’s every 2weeks. Levels started to improve and then Started having an intolerance to the hydroxyurea. Continued with phlebotomy’s only as I can’t take aspirin. Platlets back up to 1100
Hi all, I was diagnosed in jan 22. My platelets were over 1100. I was immediately put on hydroxyurea and phlebotomy’s every 2weeks. Levels started to improve and then Started having an intolerance to the hydroxyurea. Continued with phlebotomy’s only as I can’t take aspirin. Platlets back up to 1100
Mich1234567
in
MPN Voice
2 years ago
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