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switch from peg interferon to Jakavi due to shortage, anyone doing the same?
I just had a call with my haematologist and MPN specialist in Dublin and she said she will probably have to move to me to
Jakavi
due to the interferon shortage. She said
Jakavi
should help with my thyroid issues anyway?
I just had a call with my haematologist and MPN specialist in Dublin and she said she will probably have to move to me to
Jakavi
due to the interferon shortage. She said
Jakavi
should help with my thyroid issues anyway?
Deevie1
in
MPN Voice
27 days ago
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
5 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
5 months ago
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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
5 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
7 months ago
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
10 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
5 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
11 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
11 months ago
10 years to live?
So I was at the Hemo/onco last week. I kind of jokingly asked him, "So do you think I will live another 10 years?", and he said "Maybe". Now before you get mad at him, he did, of course, quantify that no one knows, and no one can predict the course of the disease exactly yada yada [i]BUT,[/i] he thinks
So I was at the Hemo/onco last week. I kind of jokingly asked him, "So do you think I will live another 10 years?", and he said "Maybe". Now before you get mad at him, he did, of course, quantify that no one knows, and no one can predict the course of the disease exactly yada yada [i]BUT,[/i] he thinks
Miriammusic
in
MPN Voice
18 hours ago
Rux or Interferon?
hi, I am a ET patiënt, but because my hematocrit and hemoglobin rises and I need phlebotomies, I will soon be diagnosed as a PV patiënt also. I am on Anagrelide at the moment but will have to switch medication very soon.I am intolerant to Hydrea. There are two possiblities: or Jakafi (rux) or Besremi
hi, I am a ET patiënt, but because my hematocrit and hemoglobin rises and I need phlebotomies, I will soon be diagnosed as a PV patiënt also. I am on Anagrelide at the moment but will have to switch medication very soon.I am intolerant to Hydrea. There are two possiblities: or Jakafi (rux) or Besremi
Jomalile
in
MPN Voice
6 days ago
Hydroxy the only choice
I was diagnosed late last year with low JAK2 (<2%) PV, with hct .54 and hgb around 170. This was due to routine test for cholesterol. Since then I've had several venesections and my quality of life due to tiredness and feeling washed out has been awful. I have no other constitutional symptoms. In desperation
I was diagnosed late last year with low JAK2 (<2%) PV, with hct .54 and hgb around 170. This was due to routine test for cholesterol. Since then I've had several venesections and my quality of life due to tiredness and feeling washed out has been awful. I have no other constitutional symptoms. In desperation
Santrix69
in
MPN Voice
10 days ago
Jakafi Dosing
I just had to change from Pegasys due to too many side effects, and was put on Jakafi. My question is does 15 mg. twice a day for a woman that is 110 lbs. seem like a lot? From what I read it seems so to me. My platelets had gone down on Pegasys from over a million to 567, but with bad side effects.
I just had to change from Pegasys due to too many side effects, and was put on Jakafi. My question is does 15 mg. twice a day for a woman that is 110 lbs. seem like a lot? From what I read it seems so to me. My platelets had gone down on Pegasys from over a million to 567, but with bad side effects.
dogsandhorses
in
MPN Voice
17 days 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
2 months 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
2 months 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
3 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
3 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
3 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
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
5 months ago
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