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Jakavi
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Besremi side effects.
Hi, I’ve read everyone of your posts for the last year and a half, and I really don’t know how I would have managed without you all. Hunter told me to get a specialist, and I did - Kuykendall at Moffitt in Tampa. I have my intown hematologist who I like and trust completely. She and Kuykendall are in
Hi, I’ve read everyone of your posts for the last year and a half, and I really don’t know how I would have managed without you all. Hunter told me to get a specialist, and I did - Kuykendall at Moffitt in Tampa. I have my intown hematologist who I like and trust completely. She and Kuykendall are in
TheaterCrazy
in
MPN Voice
2 years ago
BONE MARROW BIOPSY
Hello everyone. I am trinigirl from the Caribbean and have posted about my ET diagnosis before. I had problems with my doctor and his knowledge of this illness and was very unhappy with him. I have not posted for a while because I was under the weather. I changed my hematologist as was advised to. I
Hello everyone. I am trinigirl from the Caribbean and have posted about my ET diagnosis before. I had problems with my doctor and his knowledge of this illness and was very unhappy with him. I have not posted for a while because I was under the weather. I changed my hematologist as was advised to. I
Trinigirl
in
MPN Voice
2 years ago
Questions about Jakafi
Good morning everyone, I have PV. I am 75 and was diagnosed about 5 years ago. For the most part I feel fine. My Hematologist would like me to try Jakafi. I had a bad reaction to Hydroxy and Anagrelide. Currently on aspirin and clopidigrel (Plavix) and other than lots of bruising, no other issues
Good morning everyone, I have PV. I am 75 and was diagnosed about 5 years ago. For the most part I feel fine. My Hematologist would like me to try Jakafi. I had a bad reaction to Hydroxy and Anagrelide. Currently on aspirin and clopidigrel (Plavix) and other than lots of bruising, no other issues
Bluetoday1
in
MPN Voice
2 years ago
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Hydroxyurea-induced ankle ulcers
85, been on 1000 mg/day of Urea for five years fighting essential thrombocytosis. Now have a nasty ankle ulcer and my doc wants me to switch to Jakafi....disinclined to do that until I exhaust all the alternatives (cost, worry about taking a drug that kills RBC when I'm already ~40% below the lower
85, been on 1000 mg/day of Urea for five years fighting essential thrombocytosis. Now have a nasty ankle ulcer and my doc wants me to switch to Jakafi....disinclined to do that until I exhaust all the alternatives (cost, worry about taking a drug that kills RBC when I'm already ~40% below the lower
veryoldman
in
MPN Voice
2 years ago
Jakafi (Rux) vs Besremi Side Effects
Edited to show PV - Rux (rather than MF-Rux ) effects info I started Besremi INF last Feb, as discussed in recent posts. My Dr said it is good medicine. But his 1st choice is Rux. He said it has fewer side effects and is best for symptom relief. I have PV Dx with ET features. I opted to go with
Edited to show PV - Rux (rather than MF-Rux ) effects info I started Besremi INF last Feb, as discussed in recent posts. My Dr said it is good medicine. But his 1st choice is Rux. He said it has fewer side effects and is best for symptom relief. I have PV Dx with ET features. I opted to go with
EPguy
in
MPN Voice
2 years ago
New here, question on blood pressure, fatigue
Hi, great to discover this forum, and read about others' experiences! I was diagnosed with PV and the JAK2 V617F mutation in June 2021, after suffering a heart attack in March '21 due to a blocked artery. Strangely my blood counts in March were not too high, but increased rapidly thereafter, and I was
Hi, great to discover this forum, and read about others' experiences! I was diagnosed with PV and the JAK2 V617F mutation in June 2021, after suffering a heart attack in March '21 due to a blocked artery. Strangely my blood counts in March were not too high, but increased rapidly thereafter, and I was
Sewingtime
in
MPN Voice
2 years ago
Covid and Jakavi.
I was diagnosed with ET in 2016, and I have had Myelofibrosis since 2017, so taking
Jakavi
ruxolitinib , I spoke to my haematologist today, and asked him if I contracted Covid should I keep taking ruxolitinib, as it is an immune suppressant.
I was diagnosed with ET in 2016, and I have had Myelofibrosis since 2017, so taking
Jakavi
ruxolitinib , I spoke to my haematologist today, and asked him if I contracted Covid should I keep taking ruxolitinib, as it is an immune suppressant.
Andrew8
in
MPN Voice
3 years ago
Question for Jakafi takers.
I've been on 20mgs a day of Jakafi for over a year because of an enlarged spleen. I feel fine now but had earlier ongoing stomach issues. I wanted to know if anyone here has been on Jakafi for any extended period of time and if there are/were any troubling side effects. Also, any recommendations on
I've been on 20mgs a day of Jakafi for over a year because of an enlarged spleen. I feel fine now but had earlier ongoing stomach issues. I wanted to know if anyone here has been on Jakafi for any extended period of time and if there are/were any troubling side effects. Also, any recommendations on
Peaches230
in
MPN Voice
2 years ago
On to Vonjo
My wife was diagnosed with ET in the early 90's and started on Hydrea then moved to Anagrelide. Then it progressed to MF and she was on Jakafi and then Inrebic which stopped because of very low platelets and hemoglobin. Then she started courses of weekly infusions of Azacitidin along with two weeks
My wife was diagnosed with ET in the early 90's and started on Hydrea then moved to Anagrelide. Then it progressed to MF and she was on Jakafi and then Inrebic which stopped because of very low platelets and hemoglobin. Then she started courses of weekly infusions of Azacitidin along with two weeks
Pte82
in
MPN Voice
2 years ago
JAKAFI not working
Dr changed my med from HU (2000mg) to Jakafi (15mg) 2 months ago, but the blood test result worsening. Hb, white blood, Hct etc. keep up. Even platelets up from 600 to 1.198. Does anyone have same experienced...? What do you do..? Please advise. Thanks
Dr changed my med from HU (2000mg) to Jakafi (15mg) 2 months ago, but the blood test result worsening. Hb, white blood, Hct etc. keep up. Even platelets up from 600 to 1.198. Does anyone have same experienced...? What do you do..? Please advise. Thanks
william-Indo
in
MPN Voice
2 years ago
Greetings
I had PV diagnosed in 2009 but mutated to MF confirmed in April 2021, on
Jakavi
to reduce my massive splenomegaly and doing well. Hoping for a SCT in the New Year. I’m just turned 59, healthy and pretty fit other than the MF and associated anaemia.
I had PV diagnosed in 2009 but mutated to MF confirmed in April 2021, on
Jakavi
to reduce my massive splenomegaly and doing well. Hoping for a SCT in the New Year. I’m just turned 59, healthy and pretty fit other than the MF and associated anaemia.
Hitchc0tt5
in
MPN Voice
3 years ago
Taking Plavix (generic clopidogrel) for PV
I have tried Hydroxyurea and Anagrelide but both of them were intolerable for me. I was getting ready to go on Jakafi (very expensive as others have pointed out). My HCT seems to be under control with an occasional phlebotomy but platelets are still very, very high. At my last Hematology appointment
I have tried Hydroxyurea and Anagrelide but both of them were intolerable for me. I was getting ready to go on Jakafi (very expensive as others have pointed out). My HCT seems to be under control with an occasional phlebotomy but platelets are still very, very high. At my last Hematology appointment
Bluetoday1
in
MPN Voice
3 years ago
Update
HI my friends! I have now seen my MPN specialist twice. I was back to see him in Nashville on November 29. My diagnosis has changed from ET to PV which is what I kept thinking (since April)! My HCT was at 47.5, so I had my first phlebotomy of 500MLs. Yahoo! I had been begging my previous Dr to do this
HI my friends! I have now seen my MPN specialist twice. I was back to see him in Nashville on November 29. My diagnosis has changed from ET to PV which is what I kept thinking (since April)! My HCT was at 47.5, so I had my first phlebotomy of 500MLs. Yahoo! I had been begging my previous Dr to do this
Wewo01
in
MPN Voice
3 years ago
Night Sweats
Hi everyone, I am looking for some feedback on night sweats. 42 years old (live in Ireland), diagnosed with ET in 2017, progressed to MF in 2020. Been having horrendous night sweats since February 2018. Under the care of Haematologist I have tried Jakafi, HU, and Interferon, none of which had any impact
Hi everyone, I am looking for some feedback on night sweats. 42 years old (live in Ireland), diagnosed with ET in 2017, progressed to MF in 2020. Been having horrendous night sweats since February 2018. Under the care of Haematologist I have tried Jakafi, HU, and Interferon, none of which had any impact
Navy12
in
MPN Voice
3 years ago
Jakavi
I started
Jakavi
treatment some months ago as I was progressing from PV to myelofibrosis. I had immediate relief from itching but it seems to have returned. Enlsrged spleen, haematocrit down, platelets low and white cells not well controlled. What now?
I started
Jakavi
treatment some months ago as I was progressing from PV to myelofibrosis. I had immediate relief from itching but it seems to have returned. Enlsrged spleen, haematocrit down, platelets low and white cells not well controlled. What now?
lucieboo
in
MPN Voice
3 years ago
Jakavi vs. hydroxyurea
Does anybody take
Jakavi
to treat JAK2 ET? Is it better than hydroxyurea?
Does anybody take
Jakavi
to treat JAK2 ET? Is it better than hydroxyurea?
Sam2022
in
MPN Voice
3 years ago
Been on healthunlock for sometime but haven’t posted. Recently put on Jakafi for pre PV. would like he hear from others.
New to Jakafi
New to Jakafi
Normangirl
in
MPN Voice
3 years ago
Jakavi. - PV
Hi … can anyone tell me “why”
jakavi
is easily accessible and affordable in the U.K. ??? Or even Europe?????
Hi … can anyone tell me “why”
jakavi
is easily accessible and affordable in the U.K. ??? Or even Europe?????
Hidden
in
MPN Voice
3 years ago
Azacitidine side effect
I have MF and have been on Jakafi for over 2 years. During this time my spleen has enlarged to fill my stomach. It is not reducing, so my Haematologist recommended a chemo drug named Azacitidine. I have had the first cycle of 7 days and finished just over a week ago. However, I am experiencing Insomnia
I have MF and have been on Jakafi for over 2 years. During this time my spleen has enlarged to fill my stomach. It is not reducing, so my Haematologist recommended a chemo drug named Azacitidine. I have had the first cycle of 7 days and finished just over a week ago. However, I am experiencing Insomnia
billybrock
in
MPN Voice
3 years ago
Side effects of JAKAFI
After severe side effects of HU I was lucky enough to be prescribed JAKAFI.. I was so delighted I thought it was going to be the answer to my problems. Sadly no. I started it in May taking 20mg per day. Within a week I had dizziness Which started about an hour of taking it. It's so bad I tripped and
After severe side effects of HU I was lucky enough to be prescribed JAKAFI.. I was so delighted I thought it was going to be the answer to my problems. Sadly no. I started it in May taking 20mg per day. Within a week I had dizziness Which started about an hour of taking it. It's so bad I tripped and
Heather270240
in
MPN Voice
3 years ago
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