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Experiences with
Ruxolitinib
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Persistant cough
I eventually got a ct scan that shows scarring at the base of my lungs this wasn’t there before I started
Ruxolitinib
. My haematologist will insist it’s not the pills.
I eventually got a ct scan that shows scarring at the base of my lungs this wasn’t there before I started
Ruxolitinib
. My haematologist will insist it’s not the pills.
Mudmaker
in
MPN Voice
5 months ago
Ruxolitinib Combinations Reduce Spleen Volume in Myelofibrosis: Combos with navitoclax/pelabresib led to more patients achieving reductions
Patients receiving pelabresib in combination with
ruxolitinib
reported fewer anemia adverse events compared with placebo plus
ruxolitinib
, and fewer patients in the combination arm required red blood cell transfusions.
Patients receiving pelabresib in combination with
ruxolitinib
reported fewer anemia adverse events compared with placebo plus
ruxolitinib
, and fewer patients in the combination arm required red blood cell transfusions.
PhysAssist
in
MPN Voice
9 months ago
Choosing medication for PV/early MF
I am due to start on
Ruxolitinib
in the next few weeks but I am quite worried about the side effects, the specialist has been advised to put me on the highest does I can manage.
I am due to start on
Ruxolitinib
in the next few weeks but I am quite worried about the side effects, the specialist has been advised to put me on the highest does I can manage.
DarcyShepp
in
MPN Voice
3 months ago
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Besremi and Rux Combined
I have a 6 month appointment on Monday and I wonder if any of you out there have been on a combined treatment of both Besremi and
Ruxolitinib
? If so, I would very much like to hear your thoughts. This forum is so VERY helpful, I continue to learn and benefit from all of the posts. Thank you!
I have a 6 month appointment on Monday and I wonder if any of you out there have been on a combined treatment of both Besremi and
Ruxolitinib
? If so, I would very much like to hear your thoughts. This forum is so VERY helpful, I continue to learn and benefit from all of the posts. Thank you!
C_Anne_Orange
in
MPN Voice
6 months ago
Ruxolitinib is intolerant, what should I do
I started taking
Ruxolitinib
at the end of 2018, when I had a huge spleen, MF3, and was 31 years old. I have been taking this medication for 5 years now.
I started taking
Ruxolitinib
at the end of 2018, when I had a huge spleen, MF3, and was 31 years old. I have been taking this medication for 5 years now.
merlisa
in
MPN Voice
8 months ago
Intolerant to IFN? Rux/IFN combo might help
All the drug-related adverse events are known toxicities of either
ruxolitinib
or PEG-IFNa2
"
. This works out to 2% with Sjo albeit small [i]n [/i]limits the meaning. But it seems about what we see in the forum.
All the drug-related adverse events are known toxicities of either
ruxolitinib
or PEG-IFNa2
"
. This works out to 2% with Sjo albeit small [i]n [/i]limits the meaning. But it seems about what we see in the forum.
EPguy
in
MPN Voice
27 days ago
Ruxolitinib
Hi Has anyone been on
Ruxolitinib
for PV for the last couple of years ,and could share the effects regarding taking
Ruxolitinib
? I have been advised to consider this ,as I had to stop taking Peg INF , Many thanks , Bobbie
Hi Has anyone been on
Ruxolitinib
for PV for the last couple of years ,and could share the effects regarding taking
Ruxolitinib
? I have been advised to consider this ,as I had to stop taking Peg INF , Many thanks , Bobbie
Bobadog
in
MPN Voice
10 months ago
Pegasys
Husband was started on Pegasys after being on
Ruxolitinib
since 2017.. He has Polycythaemia Vera He has coped really well with Rux but has had to come off owing to large amount of skin cancers over past 12months. Pruritus has been a big issue but Rux really was the answer.
Husband was started on Pegasys after being on
Ruxolitinib
since 2017.. He has Polycythaemia Vera He has coped really well with Rux but has had to come off owing to large amount of skin cancers over past 12months. Pruritus has been a big issue but Rux really was the answer.
waddles22
in
MPN Voice
6 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
6 months ago
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
5 months ago
Myelofibrosis - GVHD - graft, versus, host, disease
The
ruxolitinib
wasn't working and my spleen was getting larger. I was then (miraculously) put onto a team of haemotologists at a top hospital in my area. I'll not mention the hospitals or doctors names, I'm not sure where I stand on that.
The
ruxolitinib
wasn't working and my spleen was getting larger. I was then (miraculously) put onto a team of haemotologists at a top hospital in my area. I'll not mention the hospitals or doctors names, I'm not sure where I stand on that.
FreemanSaviors
in
MPN Voice
2 months ago
Myelofibrosis- GVHD graft, versus, host, disease.
The
ruxolitinib
wasn't working and my spleen was getting larger. I was then (miraculously) put onto a team of haemotologists at a top hospital in my area. I'll not mention the hospitals or doctors names, I'm not sure where I stand on that.
The
ruxolitinib
wasn't working and my spleen was getting larger. I was then (miraculously) put onto a team of haemotologists at a top hospital in my area. I'll not mention the hospitals or doctors names, I'm not sure where I stand on that.
FreemanSaviors
in
MPN Voice
2 months ago
Infections with Ruxolitinib
Just wondering how many of you have had lowered immunity from Rux. On the positive side, my spleen had been greatly enlarged, and Rux took it down very quickly. But not too long afterwards I found myself getting slightly feverish and very weak. Long story short, I ended up with pneumonia. Just starting
Just wondering how many of you have had lowered immunity from Rux. On the positive side, my spleen had been greatly enlarged, and Rux took it down very quickly. But not too long afterwards I found myself getting slightly feverish and very weak. Long story short, I ended up with pneumonia. Just starting
Orangeboykitty
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
6 months ago
Shingles and Ruxolitinib
[/i] [i]If you’re on
Ruxolitinib
, you have to be careful about your skin,[/i] I was told to be aware and careful of my skin when taking Hyroxycarbonide but not
Ruxolitinib
and not that it had the side effect of shingles.
[/i] [i]If you’re on
Ruxolitinib
, you have to be careful about your skin,[/i] I was told to be aware and careful of my skin when taking Hyroxycarbonide but not
Ruxolitinib
and not that it had the side effect of shingles.
nanmc
in
MPN Voice
4 months ago
Ruxolitinib and skin cancers
I’ve just seen that
ruxolitinib
has now been approved for PV, which is great, BUT do take care of sun exposed skin.
I’ve just seen that
ruxolitinib
has now been approved for PV, which is great, BUT do take care of sun exposed skin.
Gipsy123
in
MPN Voice
9 months ago
Osteoporosis and PV
I was wondering if anyone else was taking Alendronic acid whilst on
Ruxolitinib
? Many thanks, All the very best, Bobbie
I was wondering if anyone else was taking Alendronic acid whilst on
Ruxolitinib
? Many thanks, All the very best, Bobbie
Bobadog
in
MPN Voice
10 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
6 months ago
Ruxolitinib and healing
I wonder if
Ruxolitinib
prevents soft tissue healing? Anyone able to comment?
I wonder if
Ruxolitinib
prevents soft tissue healing? Anyone able to comment?
FinnMcCoull
in
MPN Voice
11 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
8 months ago
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