New Medicine Jakifi

[mickey64]

Curious to know about the new medicine called Jakifi, I believe some are taking under the name of Rutimide or something like that. My Dr says they found in the trial it did not work well on ET, however I found a posting of the internet of patients who were in that trial and it did work wonders on their ET. Any thoughts please

[Paul42]

Hi, its ruxolitinib it goes under.

It is currently being trialled for ET. Its been approved for MF and PV so far.

I have PV and since I started I have felt a lot better, my spleen has not shrunk though.

I can only imagine it would work well for ET as we all can suffer similar symptoms, in fact my platelet count has dropped from circa 400 to 200 since I started.

Getting it though for ET outside of a trial is unlikely yet as it's very expensive

Paul

[mickey64 in reply to Paul42]

Hmmm I think the trial is over here, it was FDA approved, it is expensive and there is help for it as I have checked it out, but my Dr says it did not too well in the ET patients?

[Twinkly]

I'm on this medicine for 2 years now ,it's name is ruxolitinib ....it's a drug on the Majic trial used for PV ,,,Jak poss .. But also used on the national health ,,for full blown M PN ....it's becoming more spoken about as results are made public ..iv had very good results myself ...twinkly. X

[mickey64 in reply to Twinkly]

Thanks Twinkly, its here, its FDA approved now, its very expensive of course. the trial here in the US is closed because its now on the market. I can get approved but my Hemo Dr says they found it was good for ET but if I go to there website I see where they do recommend it for ET. so who knows?

[mickey64 in reply to mickey64]

sorry I meant not good for ET. LOL

[Mirribell in reply to Twinkly]

Hello Twinkly

Are you taking it for MF? I started taking it in April. It has certainly reduced my spleen size and night sweats. It has also caused me to put on weight. Did this happen to you and does it even out eventually? Thank you

[darcey in reply to Mirribell]

Hi Mirribell

I was taking Hydroxcarmide for ten years but my ET changed to MF two years ago after an big operation where I lost a lot of blood. I needed blood transfusions over two days needing in total eight units.

I have been taking Ruxolitnib for a year & half its been wonderful. My spleen reduced in three weeks and the night sweats have also reduced. But I have put on a lot of weight especially around my middle, that's not so good as it's a side effect of the new drug.

the hospital say not to worry but unfortunately I do as all my clothes are too tight around my tum.

Hope you are coping well on the Ruxolinib.

Many thanks Darcy

[Twinkly in reply to Mirribell]

Hello merry belle ,,,I have been diagnosed with PV ,,the this August after my yearly bone marrow exam ,,I was told because of evident scarring in the bone marrow ,I have now moved onto MPN ..my spleen now growing slightly ..is measured 19 ...it was 14 at the beginning 4 years ago ...I take 6 ruxolitinib a day now ,,and clopitorol .for blood thinning .. The way I control my weight gain ..is exercise and my nutri bullet ..drinks ..I eat lots of veg ,,hardly eat meat now ..drink juice ,lots of filtered water ....no cans ..or packets ..it's easy to do it that way ..my friends are very good they grow for my diet and their chickens produce eggs,,the answer is ,,,get lots of mates involved ..twinkly. X

[Mirribell in reply to Twinkly]

Thank you!

[mickey64]

this is what the website for this medicine says:

•Polycythemia vera who have had an inadequate response to or are intolerant of hydroxyurea1

•Intermediate or high-risk myelofibrosis, including primary myelofibrosis, post–polycythemia vera myelofibrosis and post–essential thrombocythemia myelofibrosis.1

[Paul42 in reply to mickey64]

Hi

I dont think it is approved yet for ET.

I cant seen anything online to suggest it has been.

Paul

[Twinkly]

I'm not an expert at all ..I think it's used when the spleen is growing ...at the forum in London we saw slides of a French person ..before and after ..the spleen had diminished greatly ..I was well impressed ,,I was very sick on taking hydroxi ....needed venesection every 4 weeks for 18 months ..very unstable ..but as soon as I changed to ruxolitinib ..I became so much better ,,,,,, Twinkly x

[Jane65]

I have post ET Myelofibrosis. I was on Hydroxy urea for 10 years with no side effects and it worked really well in controlling my platelet count. Unfortunately it have progressed to myelofibrosis now and take 40mg of Jakafi each day. It is working for me to reduce my spleen size which was huge, my fatigue and improve my appetite. I am on various forums across the world and my understanding is that Jakafi is prescribed for myelofibrosis. Having said that, we are all different in the way our disease mutates so I suppose Jakafi might be an option for a person with ET who is starting to mutate into MF.

[linds]

Hi Everyone,

I have been taking Rux for a year now as soon as I changed from PV. My Mylofibrosis crept up on me! Having felt truly rotten for over a year with no energy, hot flushing hot enough to serve the National Grid, poor sleeping pattern to name just a few things, Rux has been my saviour as I now feel my old self again. My amount has been reduced and reduced to now taking 25mg daily and my spleen gone from 24cm to 7cm this last visit on Monday. I am so grateful for the opportunity to be taking this drug. I know it is unknown territory as to how long it will be such a success but at least I have had this chance. Best wishes to all.

Linds

[linds]

P.S.

It has made me put on weight and I have tried to lose it by giving up sugar and it has made no difference but it is the last thing I am worrying about!

[Paul42]

Hi

Just to add - i agree weight gain is a symptom. There is a theory that the reason for this is because people with enlarged spleen cant eat as much as the spleen rests on the stomach, as it reduces in size you eat more and put weight on.

I don't believe that is correct, it may be a factor for some, but my spleen hasnt shrunk and i put almost 1 stone on within a couple of months.

Fortunately for me i felt so much better on the Ruxolitinib i have been able to increase my physical excercise and have managed to shed the weight i gained.

Paul

[Mirribell in reply to Paul42]

Thank you Paul. That's very encouraging