Jackifi

[Murry33]

Has anyone on here taken Jakafi and if so what results and side effects have you had?

[Rachelthepotter]

Ruxolitinib is the generic name for Jakafi and that's how most people in this forum refer to it. I’ve been taking it for 6 months. Main side effect for me is fatigue due to hb dropping. Transfusions and then EPO have helped with that.

All the best

[jane13]

it was brilliant initially - I felt good for the first time in years. It shrank my spleen from enormous to no longer palpable. It stabilised my blood counts. I have retained most of these benefits - which are considerable given I was going downhill fast on HU. But the amazing feeling of well-ness has worn off and I am now back to feeling tired and under the weather all the time. I also have lots of aches and pains.

[mikerodol]

Have taken for just over a year now. Feel so much better than before and no problems with side effects. Anaemia was worse for first 10 weeks or so but has recovered somewhat.

[Realtorlin]

I have taken Jakafi for 2 years. It stopped the weight loss, helped with fatigue, gave me energy actually. It does lower my hgb do I have had 20 transfusions. I would say it is a good dtug.

[JSKly]

I took Ruxolitinib for about 3 years. Very easy to take. It lowered my platelets well. Only side effect was too low red cells so if I took enough of the drug for platelets I became anemic with symptoms of angina. But easy to take.

[linds]

Hello Murray,

I have been taking Jakavi for over three years and would say it has been a 'life returner'. I had PV to begin with and then three years ago, when I was so fatigued life was not fun, I discovered I had mutated to MF. It was then I began Rux. My spleen reduced dramatically, my energy levels increased somewhat. My night sweats decreased and the itching ceased. My biggest disadvantage was the increase in weight when I really did not need that, however, small price to pay I think. I am still fatigued and have the odd bone ache but this could be the MF anyway. Generally I think Jakavi has been a great drug and I am extremely grateful for it.

Hope this helps. Linda

[Murry33 in reply to linds]

Linda. I have none of those symptoms but my platelets are extremely high. I will be very upset if I have weight gain as I have been fighting for years to keep it down...

[MichaelS]

I have also been on it since January 2013. I was on 20mg in November 2012 but it was too high a dose so I had a transfusion and am now on 10mg twice a day. My spleen reduced nearly overnight and has been hiding in its proper place since mid 2013. I have only 2 side effects and that is my weight has increased, and also my cholesterol which is nuisance.

I have post PV, MF. PV since 1983. MF since about 2010

I wish everybody a good Christmas. I will be skiing in Austria!

[Fika500]

Michael your story gives me great encouragement for my husband. Thank you for sharing and thank you to everyone else who replied Murry’s question. He was diagnosed with PV in 1986 & lived well with regular venesections ( he did suffer from itch too). In 2014 it progressed to Myelofibrosis. He gradually became extremely debilitated this year and his spleen was greatly enlarged. ( He had very low platelets & high WCC) He has been on 5mg of Ruxolitinib for about ten weeks now and the effect is fantastic. Platelets are rising & wcc going down . His energy levels are so much better. It has given him a new lease of life.

[Murry33]

Thanks to everyone for the answers and comments. Merry Christmas!

[socrates_8]

Hey Murray...

I have been taking Jakafi (Ruxolitinib) now for circa 2 years.

At first I was diagnosed w/ ET CAL-R type 2+, however a BMB changed that to MF.

I suppose that there are many side-effects, and that sometimes it might be difficult too to determine which of them are side-effects & which are actually symptoms of a progressive condition (MF in my case).

Initially, I found that the Jakafi gave me a new lease of energy. My spleen settled down some and some of my aches & pains subsided...

It is a bit like a roller-coaster really, & I suppose that it is also somewhat different for each of us, however similar at the same time...

Recently, my nausea, fatigue & bone pain has gradually become somewhat more intensified & I have started trying other avenues for relief I.e. Cannabis oil. However, it's too early to give a meaningful report on my own trials thus far...

At the outset, I was commenced on 25mg b/d (twice daily), with 100mg low dose aspirin, & a prophylactic to guard against infection. (I recently reduced this to 20mg b/d)

I believe that I have now suffered from two TIAs (minor brain strokes), and my platelets are still over the Million while my Hct & Hgb are diminishing along w/ my red blood cell count. My anemia grows ever worse as does my breathlessness however, I continue to try to maintain a regular exercise regime and a low-carb diet... so far so good...

It must be said however, that prior to the Jakafi, I was really not that able to do anything. I also suffer from severe memory problems, but again... this could most likely be associated w/ my MPN rather than the medication.

Best wishes

Steve

(Sydney)

[Murry33 in reply to socrates_8]

Steve. Thanks for your reply. It is hard for me as high platelets are my only issue. I work 6 Days a week and also exercise often and do the low carb thing. I have aches and pains but nothing too bad. I am going to a specialist in January to see if they want me to stay on this or possibly talk about a transplant. If your platelets are still so high then what good does the medicine do?

[socrates_8]

Hi again Murray...

I guess we are all just a tad different in a variety of ways, our MPNs are not completely identical, and other variables like age & physiology can also play an important role...

Firstly, I would like to ask you what is your actual diagnosis & age etc...?

How long ago were you diagnosed, & what medications & results are thus far forthcoming etc...?

As I stated above, before commencing the Jakafi, I was largely useless & so fatigued I could barely arise each day. My spleen too also initially reduced from 125mm back to 110mm, which helped me w/ my nausea too. Having an enlarged spleen presses against the stomach & causes that feeling of always having a full stomach, & that can also be a tad uncomfortable.

Hence, the biggest single benefit was actually finding that after doing away w/ both HU & Interferon (even though they both helped w/ Platelet reductions), my mental fogginess lifted and I suddenly felt more alert once more... I really detested HU for that reason, & Interferon seemed to increase my depression to intolerable levels.

However, I do also believe that while my bone pain seems to be intensifying at the moment, the Jakafi really helped a little in that area as well, (unless that was merely a placebo at work?).

I guess the thing is that there is no 'Silver bullet' for MF as yet... & until something better comes along Ruxolitinib still seems to produce some of the best benefits, all things considered, & in my view...

But remember Murray, we are all just a tad different, and the chemistry that works well for one might not do so for another...

Best

Steve

[Murry33 in reply to socrates_8]

Steve I never saw this response until now! My name is Mary. I was initially diagnosed with ET and was on anagelide for about 10 years but then after a bmb my diagnosis was changed to myleofibrosis. I changed to hydrea and was on it for just under 3 years when it stopped working. My platelets are now 1.4 million and I’m worried about a stroke. I have no symptoms besides fatigue and I cannot tell if that’s from the disease, the meds, or my age haha. I am 56 and I just want the platelets undercontrol. Most of the people on here have enlarged spleen and bone pain and such but I am fortunate enough to only have the platlets issue. I really appreciate your response I’m sorry I just saw this. Hope to here from you again.

[socrates_8]

Hi Mary...

Sorry that I was calling you Murry... Hmmm... I suppose that they do actually sound a tad similar

My platelets do go up & down on a semi-regular basis. Usually from around the 800 mark to well over the million. But not quite as high as you are at the moment (1.4M).

Maybe you should ask your medical team about you trying Ruxolitinib (Jakafi) just to see if you derive a benefit. You do need to find some way to drive down your platelets...

Recently I trialled THC (a type of cannabis oil) however, that seemed to be a failed trial from my own perspective as my platelets shot back up over the Million & it also seemed to exacerbate my fatigue to very unhelpful levels...

I have just commenced taking Curcumin (extracted from tumeric), to see if it helps with the inflammation... (watch this space)

If it doesn't really help, I will return to trial the CBD oil, which is different to the THC cannabis oil.

I am happy to let you know how these things might progress. However, I do keep my medical team advised & please remember that we might all have different results from a variety of treatment regimes... It is largely a trial & error thing as treating any MPN is a relatively new field of expertise.

You are fortunate Mary, that you are in the UK (if you are?), as in Australia, we have very few people (medical specialists) that know & understand MPNs etc...

Best wishes

Steve

[Murry33]

Steve. I am in the US and the medical here is good but I moved a little over a year ago and finally got insurance that enables me to go to a huge cancer clinic here. I got on the 31st of this month. So I am currently on jackafi that I started in December but so far it hasn’t worked. Hopefully it will but I am happy to finally be going to an MPN specialist. I really don’t know what else they can do because I’ve been on many things that always stop working. I would like to hear what happens with your trial. Thanks for your input. Take care. Mary