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Ruxolitinib
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Newly diagnosed Myelofibrosis Stage 2
I am reaching out to the MPN community for their experiences on being on
Ruxolitinib
.
I am reaching out to the MPN community for their experiences on being on
Ruxolitinib
.
Searcher56
in
MPN Voice
7 months ago
Which other drugs are usually used alongside ruxolitinib when it's not having enough effect on its own?
If I do end up having to take another drug alongside the
ruxolitinib
, what is it likely to be? Carol.
If I do end up having to take another drug alongside the
ruxolitinib
, what is it likely to be? Carol.
MCW22
in
MPN Voice
7 months ago
Just wanted to share my Primary Myelofibrosis journey so far…….
Started
Ruxolitinib
in October 2023 which has been great as has stopped the itching (Pruritus), night sweats and has also shrunk the spleen which means am able to eat more to put back the weight which had been lost.
Started
Ruxolitinib
in October 2023 which has been great as has stopped the itching (Pruritus), night sweats and has also shrunk the spleen which means am able to eat more to put back the weight which had been lost.
LFCLove
in
MPN Voice
2 months ago
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Thank you and latest blood results
Thank you for sharing your experiences with
Ruxolitinib
. I have now completed 4 weeks on Rux, 20 mg twice a day for PMF intermediate 2. My bloods, already low and out of range before I started, have dropped considerable.
Thank you for sharing your experiences with
Ruxolitinib
. I have now completed 4 weeks on Rux, 20 mg twice a day for PMF intermediate 2. My bloods, already low and out of range before I started, have dropped considerable.
artydutch
in
MPN Voice
2 months ago
Ruxolitinib not working so well
I was put on
Ruxolitinib
and at first it worked very well but now my platelets have shot up to 609 when all other counts are down in my boots!! The CRP is below 1mg so it is not likely an infection has caused this sudden increase in the platelet count.
I was put on
Ruxolitinib
and at first it worked very well but now my platelets have shot up to 609 when all other counts are down in my boots!! The CRP is below 1mg so it is not likely an infection has caused this sudden increase in the platelet count.
Searcher56
in
MPN Voice
7 months ago
Anyone near Dorking in Surrey who’d like to meet up?
I’m taking 15 mg
ruxolitinib
twice a day, and since weekly injections of EPO were added, my haemoglobin levels have pretty well normalised. Definitely feel more energetic. I really enjoyed meeting other people with MPNs at the Edinburgh forum recently.
I’m taking 15 mg
ruxolitinib
twice a day, and since weekly injections of EPO were added, my haemoglobin levels have pretty well normalised. Definitely feel more energetic. I really enjoyed meeting other people with MPNs at the Edinburgh forum recently.
Gipsy123
in
MPN Voice
5 months ago
Ruxolitinib (Jakafi) ; A generic ?
When will this drug be off patent or available as a generic? Any ideas?
When will this drug be off patent or available as a generic? Any ideas?
Innessant
in
MPN Voice
7 months ago
Jakafi + Grapefruit
Have those of you on Jakafi (
ruxolitinib
) seen this warning?
food Applies to: Jakafi (
ruxolitinib
) Do not consume grapefruit or grapefruit juice during treatment with
ruxolitinib
unless directed otherwise by your doctor.
Have those of you on Jakafi (
ruxolitinib
) seen this warning?
food Applies to: Jakafi (
ruxolitinib
) Do not consume grapefruit or grapefruit juice during treatment with
ruxolitinib
unless directed otherwise by your doctor.
hunter5582
in
MPN Voice
9 months ago
VEXAS and Sweet's Syndrome
- Janus kinase inhibitors, e.g.
ruxolitinib
, can be used to manage symptoms when steroids are reduced. - In male patients with Sweet's syndrome where there is lung involvement, and where their condition keeps flaring up when steroids are reduced, VEXAS should be considered.
- Janus kinase inhibitors, e.g.
ruxolitinib
, can be used to manage symptoms when steroids are reduced. - In male patients with Sweet's syndrome where there is lung involvement, and where their condition keeps flaring up when steroids are reduced, VEXAS should be considered.
Shell567
Sweet's Syndrome UK
in
Sweet's Syndrome UK
2 months ago
Roxadustat and Revolade for MPN
In order to continue taking
Ruxolitinib
, I took hormones for a long time before, but then side effects also came along. So my attending doctor asked me to try Roxadustat and Revolade these two drugs.
In order to continue taking
Ruxolitinib
, I took hormones for a long time before, but then side effects also came along. So my attending doctor asked me to try Roxadustat and Revolade these two drugs.
merlisa
in
MPN Voice
8 months ago
Consultant in South Wales?
I have had PMF for a long time, now taking
Ruxolitinib
. I am thinking about moving to South Wales to be near family. Does anyone have experience of Haematology Dept at Cardiff University Hospital? Any info would be v helpful. Thank you x
I have had PMF for a long time, now taking
Ruxolitinib
. I am thinking about moving to South Wales to be near family. Does anyone have experience of Haematology Dept at Cardiff University Hospital? Any info would be v helpful. Thank you x
Bulstrode5
in
MPN Voice
8 months ago
Post ET MF - Advice Please
I would like other treatment options such as Interferon &
Ruxolitinib
to be addressed, and I would be grateful for any advice on how best to approach this. I am also considering asking if he can be referred to an MPN specialist. Thank you for any advice.
I would like other treatment options such as Interferon &
Ruxolitinib
to be addressed, and I would be grateful for any advice on how best to approach this. I am also considering asking if he can be referred to an MPN specialist. Thank you for any advice.
moongazer100
in
MPN Voice
2 months ago
Ruxolitinib
I’ve just done some readings and looks like
Ruxolitinib
can also cause skin cancer . I would appreciate your thoughts
I’ve just done some readings and looks like
Ruxolitinib
can also cause skin cancer . I would appreciate your thoughts
Ameliav
in
MPN Voice
10 months ago
Ruxalitinib and Peg interferon
He has now been advised that they are taking him off the
Ruxolitinib
which is such a shame as it has been a really good drug for him apart from the skin cancers. His pruritus which was extremely bad prior to
Ruxolitinib
has completely ceased and his bloods etc really good.
He has now been advised that they are taking him off the
Ruxolitinib
which is such a shame as it has been a really good drug for him apart from the skin cancers. His pruritus which was extremely bad prior to
Ruxolitinib
has completely ceased and his bloods etc really good.
waddles22
in
MPN Voice
10 months ago
Start of my SCT journey.2
The plan is to increase my
Ruxolitinib
to further improve my symptoms and to reduce my spleen for about 3 months, or the
Ruxolitinib
is not as effective. They explained the risks and benefits and answered all my questions. They gave a timeline of what to expect.
The plan is to increase my
Ruxolitinib
to further improve my symptoms and to reduce my spleen for about 3 months, or the
Ruxolitinib
is not as effective. They explained the risks and benefits and answered all my questions. They gave a timeline of what to expect.
Grizly
in
MPN Voice
9 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
4 months ago
INCA033989 phase 1 clinical trial is recruiting patients
Patients with MF with a suboptimal response to treatment will allow for the evaluation of INCA033989 as an add-on therapy in combination with
ruxolitinib
.
Patients with MF with a suboptimal response to treatment will allow for the evaluation of INCA033989 as an add-on therapy in combination with
ruxolitinib
.
flamboyant_hawking
in
MPN Voice
10 months ago
Ruxolitinib - more news.
Another good report on
Ruxolitinib
. https://www.healio.com/news/hematology-oncology/20231220/
ruxolitinib
-has-positive-effect-on-polycythemia-vera-symptoms I'm now 10 weeks on in the change from Hydroxy to
Ruxolitinib
and doing well.
Another good report on
Ruxolitinib
. https://www.healio.com/news/hematology-oncology/20231220/
ruxolitinib
-has-positive-effect-on-polycythemia-vera-symptoms I'm now 10 weeks on in the change from Hydroxy to
Ruxolitinib
and doing well.
AirconBob
in
MPN Voice
4 months ago
A real-world study of predictors of response to hydroxyurea and switch to ruxolitinib in patients with polycythemia vera
Moreover, the predictors of a complete response (CR) with HU and its prognostic implications are yet to be defined.1 The impact of different types of suboptimal responses in patients switching to
ruxolitinib
(RUX) is also unclear.1 ....
Moreover, the predictors of a complete response (CR) with HU and its prognostic implications are yet to be defined.1 The impact of different types of suboptimal responses in patients switching to
ruxolitinib
(RUX) is also unclear.1 ....
hunter5582
in
MPN Voice
8 months ago
paraesthesia with Peg
Ruxolitinib
has been suggested too . Thanks for any other experiences out there with this problem, All the best Bobbie
Ruxolitinib
has been suggested too . Thanks for any other experiences out there with this problem, All the best Bobbie
Bobadog
in
MPN Voice
9 months ago
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