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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
4 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
1 month 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
5 months ago
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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
5 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
9 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
11 months ago
Jakavi
Has experienced a weight gain while on
Jakavi
. I have been on and off it for past fifteen months due to side effects. I have put on over a stone in weight and find it very hard to shift it My blood pressure has gone up and my medication has been increased and a new medication added.
Has experienced a weight gain while on
Jakavi
. I have been on and off it for past fifteen months due to side effects. I have put on over a stone in weight and find it very hard to shift it My blood pressure has gone up and my medication has been increased and a new medication added.
Mudmaker
in
MPN Voice
1 year ago
Hydrea VS Jakavi
After 20 years with hudrea the moment has came when
jakavi
entered my life. Does anyone have experience with
jakavi
? I would appreciate it if someone could tell me their experience. I could say I'm not happy with it I found the transition very difficult.
After 20 years with hudrea the moment has came when
jakavi
entered my life. Does anyone have experience with
jakavi
? I would appreciate it if someone could tell me their experience. I could say I'm not happy with it I found the transition very difficult.
MarPapa
in
MPN Voice
1 year ago
Headaches. A Jakavi side effect?
I have been on
Jakavi
since August 22 after being diagnosed with MF. I had a high Sympton burden but was assured that’s not a reflection on my prognosis?! I have had constant headaches recently taking the Rux/
Jakavi
20mg twice a day. ( was reduced to 15mg fatigue increased so back to 20mg) .
I have been on
Jakavi
since August 22 after being diagnosed with MF. I had a high Sympton burden but was assured that’s not a reflection on my prognosis?! I have had constant headaches recently taking the Rux/
Jakavi
20mg twice a day. ( was reduced to 15mg fatigue increased so back to 20mg) .
Sherpa8
in
MPN Voice
1 year 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
16 days 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
1 month ago
Co pay assistance exhausted for Jakafi
My BCBS coverage through my employer was changed at the new year. Someone decided I was too expensive and changed how drugs were covered. They used to apply toward my deductible and then covered 100%. At the beginning of this year that changed. Drugs no longer factor into the deductible and I have a
My BCBS coverage through my employer was changed at the new year. Someone decided I was too expensive and changed how drugs were covered. They used to apply toward my deductible and then covered 100%. At the beginning of this year that changed. Drugs no longer factor into the deductible and I have a
Wewo01
in
MPN Voice
2 months ago
Jakafi and night
Anyone else on Jakafi/ruxolitinib and have their head “racing” at bedtime? I guess sort of like you’ve had several cups of coffee and laid down to sleep.
Anyone else on Jakafi/ruxolitinib and have their head “racing” at bedtime? I guess sort of like you’ve had several cups of coffee and laid down to sleep.
ProudHarry
in
Fight MPN
2 months ago
Jakafi out of stock
Hi all fellows in MPN, I just met my doc and informed that Malaysia especially Kuala Lumpur hospitals out of stock for Jakafi and Pegasys. If you have a plan to see your doc in very near time, pls ensure to ask more for your buffer stock. Cheers
Hi all fellows in MPN, I just met my doc and informed that Malaysia especially Kuala Lumpur hospitals out of stock for Jakafi and Pegasys. If you have a plan to see your doc in very near time, pls ensure to ask more for your buffer stock. Cheers
william-Indo
in
MPN Voice
3 months ago
Besremi side effects?
Hello community, After getting the prescription for Besremi, my husband is now tentative about starting the medication as he has be told by both the hematologist and the Specialty pharmacy that the side effects are pretty extreme. I know that side effects are a “potential” - but the most worrisome
Hello community, After getting the prescription for Besremi, my husband is now tentative about starting the medication as he has be told by both the hematologist and the Specialty pharmacy that the side effects are pretty extreme. I know that side effects are a “potential” - but the most worrisome
Laluna5683
in
MPN Voice
3 months ago
Besremi benefits?
hello community, I’ve previously asked a question about Besremi vs Jakafi ( for my husband with PV, currently on hydroxyurea) and really appreciative the responses. My new question is…… Since choosing Besremi and just recently receiving the shipment (haven’t started yet) - his most recent blood
hello community, I’ve previously asked a question about Besremi vs Jakafi ( for my husband with PV, currently on hydroxyurea) and really appreciative the responses. My new question is…… Since choosing Besremi and just recently receiving the shipment (haven’t started yet) - his most recent blood
Laluna5683
in
MPN Voice
3 months ago
PV and AMD?
I've had PV since 2015 and have been on Jakafi for 18 months. I've recently been diagnosed with age-related macular degeneration and have been treated with intravitreous avastin. I've seen some papers suggesting that AMD is more common for people with MPNs. Has anyone else had this experience? Steve
I've had PV since 2015 and have been on Jakafi for 18 months. I've recently been diagnosed with age-related macular degeneration and have been treated with intravitreous avastin. I've seen some papers suggesting that AMD is more common for people with MPNs. Has anyone else had this experience? Steve
sbs_patient
in
MPN Voice
3 months ago
ET: Changing from HU to Jakafi or an Interferon treatment
Hello everyone, I'd be really grateful for any guidance / advice on the following: ET / JAK2 were diagnosed 10 years ago following a stroke (fortunately without serious consequences) and I was put on HU plus Aspirin. Amazingly I had no side-effects (apart from a 'rash' on my lower legs after about
Hello everyone, I'd be really grateful for any guidance / advice on the following: ET / JAK2 were diagnosed 10 years ago following a stroke (fortunately without serious consequences) and I was put on HU plus Aspirin. Amazingly I had no side-effects (apart from a 'rash' on my lower legs after about
Bodensee
in
MPN Voice
3 months ago
Just diagnosed with 4.0 cm aneurysm of ascending aorta and severe calcification
Hi Friends I cannot express how shocked and dismayed I am finding out that I have severe calcification of my aorta and a 4.0 cm aneurysm. I have read that the aneurysm can be monitored yearly with imaging but there is nothing that can be done for the calcification. In the past 3 years, I have had
Hi Friends I cannot express how shocked and dismayed I am finding out that I have severe calcification of my aorta and a 4.0 cm aneurysm. I have read that the aneurysm can be monitored yearly with imaging but there is nothing that can be done for the calcification. In the past 3 years, I have had
Wewo01
in
MPN Voice
4 months ago
Besremi or Jakafi coverage on Medicare?
Anyone on here have Medicare coverage for either of these drugs? I just went online and see that the cost would be about $3,500 a year. Thanks!
Anyone on here have Medicare coverage for either of these drugs? I just went online and see that the cost would be about $3,500 a year. Thanks!
Laluna5683
in
MPN Voice
5 months ago
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