Search
Search
About
Log in
Join
Experiences with
Jakavi
Posts
Communities
209 public posts
Filter results
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
4 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
Want to take advantage of all our features? Just log in!
Log in
or
Join
besremi or jakafi
hello community, My husband was diagnosed with P V about 6 month ago after pre-surgical blood work showed the elevated red blood cell levels. A bone marrow biopsy confirmed the diagnosis he has been on hydroxyurea since then but has had side effects that are affecting his quality of life (lethargy
hello community, My husband was diagnosed with P V about 6 month ago after pre-surgical blood work showed the elevated red blood cell levels. A bone marrow biopsy confirmed the diagnosis he has been on hydroxyurea since then but has had side effects that are affecting his quality of life (lethargy
Laluna5683
in
MPN Voice
5 months ago
Antiinflammatory medications with Jakafi
I've read that there is a moderate risk of bleeding after using ibuprofen with Jakafi. I'd appreciate hearing reactions from people on Jakafi who have taken ibuprofen and other anti-inflammatory medications. Which anti-inflammatory medications would minimize the risk of such interactions? Thanks, Steve
I've read that there is a moderate risk of bleeding after using ibuprofen with Jakafi. I'd appreciate hearing reactions from people on Jakafi who have taken ibuprofen and other anti-inflammatory medications. Which anti-inflammatory medications would minimize the risk of such interactions? Thanks, Steve
sbs_patient
in
MPN Voice
6 months ago
Generic version of Jakafi for PV ?
Expiry of Jakafi (Rux ) Patent # 7,598,257 (Incyte) Patent expiration date is : 24th December 2027 Patent use: FOR TREATMENT OF POLYCYTHEMIA VERA (PV) IN PATIENTS WHO HAVE HAD AN INADEQUATE RESPONSE TO OR ARE INTOLERANT OF HYDROXYUREA Thus we can hope that a generic appears around that time for
Expiry of Jakafi (Rux ) Patent # 7,598,257 (Incyte) Patent expiration date is : 24th December 2027 Patent use: FOR TREATMENT OF POLYCYTHEMIA VERA (PV) IN PATIENTS WHO HAVE HAD AN INADEQUATE RESPONSE TO OR ARE INTOLERANT OF HYDROXYUREA Thus we can hope that a generic appears around that time for
Innessant
in
MPN Voice
7 months ago
switch from jakafi (RUX) to Ojjara/momelotinib
has anyone made the switch yet ? The doctor is planning to switch my husband over. He is 74 yrs old with high risk MF. Had taken HU since 2020 then switched to jakifi five months ago but made him more anemic with hemoglobin down to 6.6-7.5 so required blood transfusions monthly Just curious if anyone
has anyone made the switch yet ? The doctor is planning to switch my husband over. He is 74 yrs old with high risk MF. Had taken HU since 2020 then switched to jakifi five months ago but made him more anemic with hemoglobin down to 6.6-7.5 so required blood transfusions monthly Just curious if anyone
Bainbridge
in
MPN Voice
7 months ago
Cytokines and MPN
I got another opinion from a different specialist, and he thought I have ET and it would be a good idea to slowly switch to PEGASUS because in the long run it might be better although
Jakavi
works better with cytokines. Any thoughts?
I got another opinion from a different specialist, and he thought I have ET and it would be a good idea to slowly switch to PEGASUS because in the long run it might be better although
Jakavi
works better with cytokines. Any thoughts?
StellaPFM
in
MPN Voice
1 year ago
Jakafi
It has been two weeks that I am taking one pill a day. My hemoglobin today was an8 and last week was 11 ,has anyone had a drop like this and one week with just one pill? My doctor does not seem concerned because I’m feeling fine. I am rechecking next week and just nervous about it going lower
It has been two weeks that I am taking one pill a day. My hemoglobin today was an8 and last week was 11 ,has anyone had a drop like this and one week with just one pill? My doctor does not seem concerned because I’m feeling fine. I am rechecking next week and just nervous about it going lower
Ggrana3192
in
MPN Voice
7 months ago
Trouble getting interferon?
I was not tolerating hydroxyurea after taking it for a few years. My MPN specialist is trying to switch me to Jakafi, but we are having a hard time keeping RBCs up while getting platelets down. I am still using low doses of HU to keep platelets down, but that tack is also pushing towards anemia. We
I was not tolerating hydroxyurea after taking it for a few years. My MPN specialist is trying to switch me to Jakafi, but we are having a hard time keeping RBCs up while getting platelets down. I am still using low doses of HU to keep platelets down, but that tack is also pushing towards anemia. We
Owl-fan
in
MPN Voice
7 months ago
wbc keeps climbing
hello friends, anyone have an idea why my wbc would keep climbing ? My doctor can’t figure it out either . End of August was in the 30’s, testing each week and went into 40’s then 50’s and now I’m at 56 ! Now starting Jakafi to try to lower it.
hello friends, anyone have an idea why my wbc would keep climbing ? My doctor can’t figure it out either . End of August was in the 30’s, testing each week and went into 40’s then 50’s and now I’m at 56 ! Now starting Jakafi to try to lower it.
Ggrana3192
in
MPN Voice
8 months ago
very itchy from Jakafi
hello friends, I was wondering if anyone else who started Jakafi 10mg a day has a terrible itch all over legs and arms . I didn’t have this before starting and I was wondering if it will go away, it’s been two days I started this med Be well
hello friends, I was wondering if anyone else who started Jakafi 10mg a day has a terrible itch all over legs and arms . I didn’t have this before starting and I was wondering if it will go away, it’s been two days I started this med Be well
Ggrana3192
in
MPN Voice
8 months ago
Jakafi: When did it relieve your itch?
Hi all - for those on Jakafi w/ OV who felt some itch relief, how long did it take? I was diagnosed 5 mg (2x daily) but noticed no change to itch after 1 month, so was then upped to 10 mg (2x daily). After +1 month on that higher dose, still no relief (though noted constipation). Am I giving up too
Hi all - for those on Jakafi w/ OV who felt some itch relief, how long did it take? I was diagnosed 5 mg (2x daily) but noticed no change to itch after 1 month, so was then upped to 10 mg (2x daily). After +1 month on that higher dose, still no relief (though noted constipation). Am I giving up too
TwinMom88
in
MPN Voice
8 months ago
Switching Drs
In July, I was notified by my oncology clinic that my oncologist was on an emergency leave of absence with his return undetermined. 😢 I was absolutely devastated, not only because there was no information that could be given on his status, but also for the void it left not knowing where to proceed
In July, I was notified by my oncology clinic that my oncologist was on an emergency leave of absence with his return undetermined. 😢 I was absolutely devastated, not only because there was no information that could be given on his status, but also for the void it left not knowing where to proceed
K-itty
in
MPN Voice
8 months ago
panicking a bit
I mistakenly took my second dose of Jakafi 20 mg 4 hrs earlier than usual. This being France and holiday month I cannot get hold of my haematology care team for my PV… SHOULD I BE WORRIED?
I mistakenly took my second dose of Jakafi 20 mg 4 hrs earlier than usual. This being France and holiday month I cannot get hold of my haematology care team for my PV… SHOULD I BE WORRIED?
Anouchka
in
MPN Voice
8 months ago
jakafi and Pegasys combination for Myelofibrosis
Does anyone have both Jakafi and Pegasys? My Mpn has hinted that this might be a good combination. I think there have been trials but I can’t find them now!
Does anyone have both Jakafi and Pegasys? My Mpn has hinted that this might be a good combination. I think there have been trials but I can’t find them now!
Yanico
in
MPN Voice
9 months ago
Jakafi interactions
https://www.medicalnewstoday.com/articles/drugs-jakafi-interactions Some info on interactions with Rux/Jakafi, I am not sure how good quality this info is so maybe worth double checking any of it if in doubt
https://www.medicalnewstoday.com/articles/drugs-jakafi-interactions Some info on interactions with Rux/Jakafi, I am not sure how good quality this info is so maybe worth double checking any of it if in doubt
ainslie
in
MPN Voice
9 months ago
Jakafi + Grapefruit
Just came across this warning on Drugs.com. I had never seen before. Have those of you on Jakafi (ruxolitinib) seen this warning?
ruxolitinib food Applies to: Jakafi (ruxolitinib)
Do not consume grapefruit or grapefruit juice during treatment with ruxolitinib unless directed otherwise by
Just came across this warning on Drugs.com. I had never seen before. Have those of you on Jakafi (ruxolitinib) seen this warning?
ruxolitinib food Applies to: Jakafi (ruxolitinib)
Do not consume grapefruit or grapefruit juice during treatment with ruxolitinib unless directed otherwise by
hunter5582
in
MPN Voice
9 months ago
Good news on mutant allele reduction on Jakafi.
Hopetohelp's post about mutant allele % prompted me to share some good news. I was diagnosed with PV and JAK2 V617F in July 2021 after a heart attack caused by a blocked artery. At that point my mutant allele frequency was 60%. I started on hydroxyurea, but as it did nothing to relieve my severe itching
Hopetohelp's post about mutant allele % prompted me to share some good news. I was diagnosed with PV and JAK2 V617F in July 2021 after a heart attack caused by a blocked artery. At that point my mutant allele frequency was 60%. I started on hydroxyurea, but as it did nothing to relieve my severe itching
Sewingtime
in
MPN Voice
9 months ago
Mylo Fibrosis, et al
Hello. I'm new to this community and frankly new to social networking on health. My abbreviated story is that I transitioned to Mylo Fibrosis (MF) a few years ago, after dealing with Polycythemia Vera (PV) for 25+ years (I'm 66 years old). The PV regimen was inclusive of Phlebotomies, meds such as Agrilyn
Hello. I'm new to this community and frankly new to social networking on health. My abbreviated story is that I transitioned to Mylo Fibrosis (MF) a few years ago, after dealing with Polycythemia Vera (PV) for 25+ years (I'm 66 years old). The PV regimen was inclusive of Phlebotomies, meds such as Agrilyn
luvinretirement
in
MPN Voice
9 months ago
1
2
3
...
11
Next page
10
Filter results
Clear filters
Posted in
All communities
MPN Voice
199 results
Fight MPN
6 results
CLL Support
4 results
Sort by
Most Relevant
Newest