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Jakavi
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Myelofibrosis
I am trying to lose some of the weight I put on with
Jakavi
, with some success, so it could be low blood sugar. Anyone else experiencing this? Thanks. Lucieboo.
I am trying to lose some of the weight I put on with
Jakavi
, with some success, so it could be low blood sugar. Anyone else experiencing this? Thanks. Lucieboo.
lucieboo
in
MPN Voice
4 months ago
Jakavi advice please
Hi everybodyI learned today that my ET has progressed to MF. I had a bone marrow biopsy which seems to confirm it, although a spleen scan showed my spleen is completely normal. I'm on Pegasys 135ml at the moment but platelets are 729 (going up) and not well controlled. The consultant suggests moving
Hi everybodyI learned today that my ET has progressed to MF. I had a bone marrow biopsy which seems to confirm it, although a spleen scan showed my spleen is completely normal. I'm on Pegasys 135ml at the moment but platelets are 729 (going up) and not well controlled. The consultant suggests moving
Sivasi
in
MPN Voice
4 months ago
New to Rux
Two more queries here: I'm newly diagnosed with post-ET Myelofibrosis and I've just collected my first prescription of
Jakavi
which I haven't taken yet.I noticed that the tablets are 20mg, and I have to take 2 a day.
Two more queries here: I'm newly diagnosed with post-ET Myelofibrosis and I've just collected my first prescription of
Jakavi
which I haven't taken yet.I noticed that the tablets are 20mg, and I have to take 2 a day.
Sivasi
in
MPN Voice
4 months ago
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Imetelstat Users?
My dilemma is that I don't know the degree of effectiveness of the Imetelstat, and would almost certainly have to suffer my original bad symptoms when I stop using
Jakavi
.
My dilemma is that I don't know the degree of effectiveness of the Imetelstat, and would almost certainly have to suffer my original bad symptoms when I stop using
Jakavi
.
TimGS
in
MPN Voice
8 months ago
Low saturation with PV and Jakavi 20
I have had PV since two years. Rux started december '23. Good results with HB and HCT. HB is pretty low now 7.7 for a while. My weight has increased 10% wit the same diet. My saturation is, in rest 92, with effort I can raise it to 93/94. Long test last week revealed a very good lung condition (5,7
I have had PV since two years. Rux started december '23. Good results with HB and HCT. HB is pretty low now 7.7 for a while. My weight has increased 10% wit the same diet. My saturation is, in rest 92, with effort I can raise it to 93/94. Long test last week revealed a very good lung condition (5,7
Quitojohn
in
MPN Voice
5 months ago
New member - Post ET MF (Australia)
I started
Jakavi
in September 2023, and due to poor response, I was also put on Hydrea and Pegasys to slow disease progression. After my platelets dropped below 1000, I stopped the Pegasys.
I started
Jakavi
in September 2023, and due to poor response, I was also put on Hydrea and Pegasys to slow disease progression. After my platelets dropped below 1000, I stopped the Pegasys.
Hatchie
in
MPN Voice
4 months ago
On Pegasys 180 for 2 months.
At first just when I did injections now all the time Dr has taken me off Pegasys immediately put me back on Hu, only 500mg until
Jakavi
, is approved. Last time on Hu only platlet 1.99 million. Concerned that the kidneys and liver will need to recover. Has anyone else experienced this?
At first just when I did injections now all the time Dr has taken me off Pegasys immediately put me back on Hu, only 500mg until
Jakavi
, is approved. Last time on Hu only platlet 1.99 million. Concerned that the kidneys and liver will need to recover. Has anyone else experienced this?
ETMF
in
MPN Voice
9 months ago
sjogens?
(On
Jakavi
since August 23) So took Pegasys for about 16 months After a couple of months on Pegasys I started to experience close vision problems which could not be corrected with glasses. I saw several opticians. Over the last year my eyes have been very puffy as well.
(On
Jakavi
since August 23) So took Pegasys for about 16 months After a couple of months on Pegasys I started to experience close vision problems which could not be corrected with glasses. I saw several opticians. Over the last year my eyes have been very puffy as well.
Yanico
in
MPN Voice
9 months ago
Antimalaria Medication and Jakavi
I tried to find information to see if the malaria medications interact with the
Jakavi
and which medication best to take. It seems that it is safe but thought maybe I put that out here to see if anybody has any information or experience with it.
I tried to find information to see if the malaria medications interact with the
Jakavi
and which medication best to take. It seems that it is safe but thought maybe I put that out here to see if anybody has any information or experience with it.
Ticotopia
in
MPN Voice
1 year ago
Anyone on Momelotinib/Ojjaara?
Hello all, As I continue on my Jakafi journey, I am relatively happy with my counts, as is my doctor. However, the dreaded weight gain continues. 13 pounds thus far and counting. If I could be assured (ha, ha as if) somehow that this would be it and the weight would stabilize, I might consider
Hello all, As I continue on my Jakafi journey, I am relatively happy with my counts, as is my doctor. However, the dreaded weight gain continues. 13 pounds thus far and counting. If I could be assured (ha, ha as if) somehow that this would be it and the weight would stabilize, I might consider
Miriammusic
in
MPN Voice
16 days ago
Starting Rux Next Month
After five years of phlebotomy only with PV I started besremi two years ago at the minimum dose since I wanted to take a more early intervention approach. Also my platelets were extremely high from all of the phlebs. Been on max dose of besremi now for over a year. Besremi lowered my platelets and
After five years of phlebotomy only with PV I started besremi two years ago at the minimum dose since I wanted to take a more early intervention approach. Also my platelets were extremely high from all of the phlebs. Been on max dose of besremi now for over a year. Besremi lowered my platelets and
mfh7
in
MPN Voice
1 month ago
Jakafi/Weight Gain
I will preface this by saying that I am truly grateful that I am feeling better on Jakafi. It has only been two months, but my numbers are better and most importantly, I am not having the debilitating side effects of GI issues that were ruining my life on Besremi. So, I do realize that health is number
I will preface this by saying that I am truly grateful that I am feeling better on Jakafi. It has only been two months, but my numbers are better and most importantly, I am not having the debilitating side effects of GI issues that were ruining my life on Besremi. So, I do realize that health is number
Miriammusic
in
MPN Voice
2 months ago
A Blip in time!
I am 74 (F) and was diagnosed in Nov, 2019 with PV and JAK 2 positive. I have been in clinical remission for 18 months and take Jakafi 10mg 2x daily. I have an allele burden of 15 currently down from 60 at diagnosis. My blood draws have been within limits for 18 months with only a blip in the blood calcium
I am 74 (F) and was diagnosed in Nov, 2019 with PV and JAK 2 positive. I have been in clinical remission for 18 months and take Jakafi 10mg 2x daily. I have an allele burden of 15 currently down from 60 at diagnosis. My blood draws have been within limits for 18 months with only a blip in the blood calcium
Barney50
in
MPN Voice
2 months ago
Jakafi - Chronic Myelofibrosis
I’m 72 years old hispanic female & was diagnosed with Chronic Myeloproliferative Disorder - Primary Myelofibrosis on January 2024. I started with Jakafi 10 mg (bid) on February 2024 & my symptoms have been very interesting. During the 1st two weeks I experienced nauseas & dizziness with both dosages
I’m 72 years old hispanic female & was diagnosed with Chronic Myeloproliferative Disorder - Primary Myelofibrosis on January 2024. I started with Jakafi 10 mg (bid) on February 2024 & my symptoms have been very interesting. During the 1st two weeks I experienced nauseas & dizziness with both dosages
Fresa7
in
MPN Voice
2 months ago
Muddled
Hi All - the brain is muddled and I can’t find what I’m looking for but remember seeing a discussion about taking Vit D3 while on Jakafi (rux) for my PV. Also I’ve developed a pain just below my left knee and it’s down to some osteo as well as osteopenia, alongside a “fracture” in the tibial plateau
Hi All - the brain is muddled and I can’t find what I’m looking for but remember seeing a discussion about taking Vit D3 while on Jakafi (rux) for my PV. Also I’ve developed a pain just below my left knee and it’s down to some osteo as well as osteopenia, alongside a “fracture” in the tibial plateau
Anouchka
in
MPN Voice
4 months ago
Anxiety
My husband has PV Jak2, intolerant to Hydroxyuria, and is to start Jakafi 10mg twice daily. He has severe anxiety and is on SSRI (duloxetine) with recent request to increase dose to 40mg. My concern is that both drugs use the same enzyme (CYP3A4) to metabolize both medications, meaning there will be
My husband has PV Jak2, intolerant to Hydroxyuria, and is to start Jakafi 10mg twice daily. He has severe anxiety and is on SSRI (duloxetine) with recent request to increase dose to 40mg. My concern is that both drugs use the same enzyme (CYP3A4) to metabolize both medications, meaning there will be
DaisyJayne1
in
MPN Voice
4 months ago
Taking Prolia with Rusolitinib (Jakafi)
I have been taking Jakafi (15 mg) twice a day for the last 3 years for my polycythemia vera. I also take blood thinners for my thrombocytosis since I have had blood clots in my lungs twice in the last 2 years. I have had osteoporosis for a while, but my T scores from bone density test are really
I have been taking Jakafi (15 mg) twice a day for the last 3 years for my polycythemia vera. I also take blood thinners for my thrombocytosis since I have had blood clots in my lungs twice in the last 2 years. I have had osteoporosis for a while, but my T scores from bone density test are really
Buggerbear
in
MPN Voice
4 months ago
itching
Hi community, I have terrible itching and now being on Besremi I feel it has gotten a little worse. I plan to stay on Besremi unless it makes sense to switch to Jakafi, which I hear is excellent at controlling itch. I just got word from my dermatologist that some people have felt relief with a combination
Hi community, I have terrible itching and now being on Besremi I feel it has gotten a little worse. I plan to stay on Besremi unless it makes sense to switch to Jakafi, which I hear is excellent at controlling itch. I just got word from my dermatologist that some people have felt relief with a combination
Pogm
in
MPN Voice
5 months ago
Dry mouth and nose
Has anyone on
Jakavi
experienced a dry mouth and nose. I can drink water to help with a dry mouth but what do I use for my nose. It is very dry and sore. thank you in advance.
Has anyone on
Jakavi
experienced a dry mouth and nose. I can drink water to help with a dry mouth but what do I use for my nose. It is very dry and sore. thank you in advance.
wendycu
in
MPN Voice
1 year ago
Open letter
Hi all: I want to thank all who have posted regarding their experience with MPNs in this forum. I'm very grateful for the information and insight regarding ET, PV, and MF. All of you have educated and helped me a great deal. I write this while experiencing a great deal of stress and sadness; due to
Hi all: I want to thank all who have posted regarding their experience with MPNs in this forum. I'm very grateful for the information and insight regarding ET, PV, and MF. All of you have educated and helped me a great deal. I write this while experiencing a great deal of stress and sadness; due to
Kiruna
in
MPN Voice
6 months ago
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