Search
Search
About
Log in
Join
Experiences with
Jakafi
Posts
Communities
226 public posts
Filter results
Third clinic visit, third different consultant
I'm not keen on hydroxy carbide, so Pegasus would probably be my preference or maybe
Jakafi
, although that hasn't been offered at the moment. Looks as though I will be starting on some kind of medication soon, but this doesn't instil much confidence.
I'm not keen on hydroxy carbide, so Pegasus would probably be my preference or maybe
Jakafi
, although that hasn't been offered at the moment. Looks as though I will be starting on some kind of medication soon, but this doesn't instil much confidence.
Transporter
in
MPN Voice
1 year ago
Coincidence?
Doctor has taken me off peg completely, and is recommending Rux (
Jakafi
) next month, going in for a blood transfusion tomorrow, so hopefully will feel better after that. Had EPO injections doubled to twice a week.
Doctor has taken me off peg completely, and is recommending Rux (
Jakafi
) next month, going in for a blood transfusion tomorrow, so hopefully will feel better after that. Had EPO injections doubled to twice a week.
lizzziep
in
MPN Voice
7 months ago
Besremi Titration Questions
I went through HU and then
Jakafi
before MPN specialist at Johns Hopkins recommended switching to Besremi for longer term complete blood response. I started Besremi titration Dec 21, 2022 at 100mcg. I have been increasing 50mcg every 2 weeks after CBC checks.
I went through HU and then
Jakafi
before MPN specialist at Johns Hopkins recommended switching to Besremi for longer term complete blood response. I started Besremi titration Dec 21, 2022 at 100mcg. I have been increasing 50mcg every 2 weeks after CBC checks.
RyanCB
in
MPN Voice
1 year ago
Want to take advantage of all our features? Just log in!
Log in
or
Join
jakafi, PV and retinal tears and detachment
Has anyone else taking
jakafi
or who has PV had this same or similar issue’s. I wonder because a friend told me some cancer drugs / gene therapy drugs can cause this complication. I’m still learning. TY
Has anyone else taking
jakafi
or who has PV had this same or similar issue’s. I wonder because a friend told me some cancer drugs / gene therapy drugs can cause this complication. I’m still learning. TY
DDSmiley63
in
Fight MPN
1 year ago
Antimalaria Medication and Jakavi
Hello dear all, Things are going well with my husband who has myelofibrosis. Jakavi has been a live changer and he responds very well to it. We are ready to go on an adventure!!!. We are leaving for Kenya in a few weeks to visit friends and of course visit Masai Mara and Ol Pejeta. My husband cannot
Hello dear all, Things are going well with my husband who has myelofibrosis. Jakavi has been a live changer and he responds very well to it. We are ready to go on an adventure!!!. We are leaving for Kenya in a few weeks to visit friends and of course visit Masai Mara and Ol Pejeta. My husband cannot
Ticotopia
in
MPN Voice
10 months ago
Itching for answers.... thankyou!
Striking comments about the efficacy of some treatments such as Alpha Lipoic Acid and Beta-alanine sound interesting as do a number of responses citing Ruxolitinib (
Jakafi
). However the latter has its own long list of possible side effects.
Striking comments about the efficacy of some treatments such as Alpha Lipoic Acid and Beta-alanine sound interesting as do a number of responses citing Ruxolitinib (
Jakafi
). However the latter has its own long list of possible side effects.
quanglewangle
in
MPN Voice
5 months ago
Besremi
I keep thinking of additional questions to ask here in addition to my previous posts about Jakafi.When my oncologist suggested that I start this drug after trying to take HU, I suggested Besremi? He said he can't get it although he's tried several places? I'm confused? Is it not offered in
I keep thinking of additional questions to ask here in addition to my previous posts about Jakafi.When my oncologist suggested that I start this drug after trying to take HU, I suggested Besremi? He said he can't get it although he's tried several places? I'm confused? Is it not offered in
K-itty
in
MPN Voice
1 year 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
Withdrawal from Jakafi
The bottom line is that I now have to come off
Jakafi
. It's apparently dangerous to do so quickly, so I'm now taking 70 mg/wk (10 mg/day).. Does anyone know the appropriate withdrawal protocol for
Jakafi
? Needless to say, I'm not feeling very well right now, most likely due to the anemia.
The bottom line is that I now have to come off
Jakafi
. It's apparently dangerous to do so quickly, so I'm now taking 70 mg/wk (10 mg/day).. Does anyone know the appropriate withdrawal protocol for
Jakafi
? Needless to say, I'm not feeling very well right now, most likely due to the anemia.
sbs_patient
in
MPN Voice
2 years ago
Jakavi
Hi Denise here again. 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
Hi Denise here again. 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
Mudmaker
in
MPN Voice
1 year ago
Ruxolitinib and urinary tract infections
I've been on
Jakafi
for a couple of months and am starting to see indications of a possible bladder infection. I understand that UTIs are a reported side effect of this medication. I found a posting on this topic from a few years ago and was wondering if anyone else has been having this problem.
I've been on
Jakafi
for a couple of months and am starting to see indications of a possible bladder infection. I understand that UTIs are a reported side effect of this medication. I found a posting on this topic from a few years ago and was wondering if anyone else has been having this problem.
sbs_patient
in
MPN Voice
2 years ago
What Happens When you go off Jakafi
I have had PV since 2014 and been on
jakafi
for 2 1/2 years. I called my oncologist to find out what would happen if I went off
Jakafi
2 weeks or more. I know he would never lower my dosage because my numbers were finally stabilized. He said it was my decision to make.
I have had PV since 2014 and been on
jakafi
for 2 1/2 years. I called my oncologist to find out what would happen if I went off
Jakafi
2 weeks or more. I know he would never lower my dosage because my numbers were finally stabilized. He said it was my decision to make.
Buggerbear
in
MPN Voice
2 years 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
Cutting up Jakafi pills?
I was wondering if anyone knows whether these pills can be cut when adjusting dosage. I've been told to reduce my initial 10 mg twice a day by taking the pills twice a day MWF and once a day on other days. This is a reduction of approximately 30%, going from 140 mg/week to 100. This is fine, but it might
I was wondering if anyone knows whether these pills can be cut when adjusting dosage. I've been told to reduce my initial 10 mg twice a day by taking the pills twice a day MWF and once a day on other days. This is a reduction of approximately 30%, going from 140 mg/week to 100. This is fine, but it might
sbs_patient
in
MPN Voice
2 years ago
Headaches. A Jakavi side effect?
Hello I’ve not posted before. Now I am feeling rather lost! 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
Hello I’ve not posted before. Now I am feeling rather lost! 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
Sherpa8
in
MPN Voice
1 year ago
On goin results on bomedemstat (LSD1 Inhibitor)
Then I decided to seek for help and after several attempts with HU ( very bad side effects, diarrhea, stomachache ) and
Jakafi
( high liver enzymes ) I decided to take a different route and join a phase 2 clinical trial for bomedemstat on PV.
Then I decided to seek for help and after several attempts with HU ( very bad side effects, diarrhea, stomachache ) and
Jakafi
( high liver enzymes ) I decided to take a different route and join a phase 2 clinical trial for bomedemstat on PV.
jafar09
in
MPN Voice
1 year ago
Ruxolitinib and NSAIDs
Would anyone care to comment on the
Jakafi
label warnings against using NSAIDs? There is reportedly an increased risk of bleeding. If this is really the case, I guess I'm limited to acetaminophen for pain management.
Would anyone care to comment on the
Jakafi
label warnings against using NSAIDs? There is reportedly an increased risk of bleeding. If this is really the case, I guess I'm limited to acetaminophen for pain management.
sbs_patient
in
MPN Voice
2 years ago
Cytokines and MPN
I read the different Post here almost everyday and I am amazed and very great greatful about how much I have learn from everyone.. Thank you! I do have a specific question concerning my MPN journey.. Feeling really sick and having bumps on my head as well as an occasional face swelling, I ended
I read the different Post here almost everyday and I am amazed and very great greatful about how much I have learn from everyone.. Thank you! I do have a specific question concerning my MPN journey.. Feeling really sick and having bumps on my head as well as an occasional face swelling, I ended
StellaPFM
in
MPN Voice
1 year ago
how good is jakafi?? Pros and cons?
hi everyone I’m about to start taking
jakafi
due to tomorrow, any input/suggestions for pmf patient like me, with splenomegaly and portal vein thrombosis (monthly ligation since march last year), jak2+, dmm3ta+ Hope to get feedback from the community! thanks a bunch!
hi everyone I’m about to start taking
jakafi
due to tomorrow, any input/suggestions for pmf patient like me, with splenomegaly and portal vein thrombosis (monthly ligation since march last year), jak2+, dmm3ta+ Hope to get feedback from the community! thanks a bunch!
Dan39
in
MPN Voice
2 years ago
Ruxolitinib Combinations Reduce Spleen Volume in Myelofibrosis: Combos with navitoclax/pelabresib led to more patients achieving reductions
SAN DIEGO -- Combining the Janus kinase (JAK) inhibitor ruxolitinib (
Jakafi
) with either navitoclax or pelabresib led to more patients with myelofibrosis achieving reductions in spleen volume, two phase III studies showed.
SAN DIEGO -- Combining the Janus kinase (JAK) inhibitor ruxolitinib (
Jakafi
) with either navitoclax or pelabresib led to more patients with myelofibrosis achieving reductions in spleen volume, two phase III studies showed.
PhysAssist
in
MPN Voice
6 months ago
1
...
3
4
5
...
12
Next page
10
Filter results
Clear filters
Posted in
All communities
MPN Voice
215 results
Fight MPN
7 results
CLL Support
4 results
Sort by
Most Relevant
Newest