Myleofibrosis

[Stripecat]

Does anyone out there have myleofibrosis and take ruxolitinib.

Would be interested in how your doing and if you have had any side effects

[pj1963]

Hello Stripecat,

Yes, I've been taking Rux for almost 5 years now with no side effects. Only complaint (a common one) would be a weight gain but, after eating less and less (!), that weight has fallen off.

Let us know how you get on.

[Otterfield]

Yes I have been on Ruxolitinib for about 15 months. I was very unwell and it has given me my life back. I have gained weight but for me that was a good thing, although I'd like to stop gaining now, ideally. Knowing I am immunosuppressed on it has made me extremely cautious out and about and there is also the embarrassing flatulence. Overall though, for me Ruxolitinib has been fantastic.

[dancingelephant]

Hi Stripecat

My story is almost identical to Otterfield's. I would agree with all that he said. Plus my tummy is still quite distended, so my spleen cannot be 'normal', and the fatigue is so annoying as it stops me from having much of a social life. However, I do still manage zumba gold and tai chi. The tai chi in particular I find very stimulating and calming. I now have the addition of EPO injections which stimulates the body to make its own iron. My anaemia means that I need transfusing about every six weeks. I have only had this additional treatment for three weeks and won't know until my next blood test how effective they have been.

The first week I took ruxolitinib. it was like a miracle. I felt immediately so much better.

I don't know where you live, but I asked for a second opinion from Prof. Harrison and saw her in October. I have my next appointment in January. I thought she was marvellous and and so animated. She is clearly full of ideas and my doctors at Canterbury have been more pro-active since this appointment.

For me, in a nutshell Ruxolitinib has been quite successful. It has reduced my bone pain - I take 20mg twice daily (which is the highest dose). When this was reduced to 10mg the pain returned.

I wish you well, and please keep us posted.

[Leighcox85]

Hi I have mylefibrosis I was diagnosed at 24 iam 36 now I have had it for 12 years been on rux quite a few years the main side effects are weight gain and after time you get memory loss known as brain fog that only started quite a few years in and I have had 4 skin cancer removals but with any drug you have weigh up the benefit and rux kept me stable for quite a long time at first it was really good I had less symptoms and felt betters for meit was a positive I wish you luck with your journey

[Stripecat in reply to Leighcox85]

Hi LeighCan you alleviate the brain fog at all ?

[Rachelthepotter]

Yes, I’ve been on Rux for 4 years. Theres a standard 5 - 10 kg weight gain for most of us. The worst side effect was aggressive sarcomatoid skin cancers on my face: I’d had sun exposure in the past.If I’d been warned by the haematologist who upped the dose , and if more dermatologists knew about it, I’d gave been saved a lot of grief. And 4 excisions plus radiotherapy to my face.

[Andrew8]

Been on Ruxo now for 4½ years, had skin cancer which required surgery, and having another lump checked next week, had symptoms of shingles - still got the rash, but platelets ( about 500) and spleen seem to remain stable. So on balance not too bad. I see there is a new drug available in the UK, for MF called Fedratinib, anyone had any experience of it yet ?

[Thankfulone]

Hi, my first time commenting on this site but was diagnosed with ET in 2008 which transitioned to MF. In 2016 I started taking Ruxilitinib and I felt so much better almost immediately. I also have had weight gain which was difficult for me as I never had weight problems in my life. But I'm learning to accept it as I feel so much better. I do have the fatigue but other than that Ruxilitinib has only been a good thing for me. I also am on 20mg twice a day. Wishing you every success!

[Stripecat in reply to Thankfulone]

Sounds pretty much like my journey but have only just started on ruxo so unsure of what to expect

[DJK12]

I've been on it for 4 years. Spleen and platelets reduced satisfactorily and night sweats only appear now if I have an infection. Dose reduced from 10mg twice a day to 5 mg twice a day. This was also because anaemia continued and I have to use EPO injections regularly to keep count at about 10. I have bucked the trend though and haven't had weight gain in fact my appetite has decreased. Despite EPO fatigue is also a continuing problem.

I was very pleased rux was available as after over 30 years I had been through most available drugs and prognosis was poor - it is also good that new ones like Fetranitib have been developed.

[Cja1956]

I was on Ruxo for about 3 years, from 2016-2019. I did experience some weight gain which for me was okay. In 2019, I changed doctors because I felt had progressed from Et to MF, and my previous doctor didn’t believe so. I had developed anemia and was extremely fatigued with terrible brain fog. My new doctor confirmed MF and took me off of Ruxo. She felt that the Ruxo was contributing to my anemia. Good luck to you on your mpn journey.

[Stripecat in reply to Cja1956]

So what are you on now?

[Cja1956 in reply to Stripecat]

So to give you a little history, when she took me off of the Ruxo, she put me on hydrea and Fedratinib. I also started taking EPO injections to bring up my hemoglobin. I took that for about four months. I stayed on the hydrea and the Fedratinib until about 2 months ago. My doctor had referred me to another hematologist because I had questions about getting a transplant. That doctor took me off of the Fedratinib. Now, I only take Hydrea and baby aspirin. When I did a follow up blood test, my hemoglobin had shot up to 11.8 which was the best it has been in years. But my platelets also shot up to 854. My next bloodwork is in January. But I have to say, I feel a lot better being off the Fedratinib.

[tracey13]

Hi, My husband is 49 years old he was diagnosed with PV at 41 he was on hydroxy but started struggling with extreme fatigue enlarged spleen

Anyhow he had a bone marrow biopsy which revealed primary myleofibrosis so he had to see the bone marrow transplant team who told him he could start ruxolitanib. This medication has been a life changer he's fatigue had gone his spleen has reduced back down almost to normal size and he feels so much better .

He's had no side effects whatsoever. The only thing he's noticed is he really does feel the cold .

His hands go so white it's like raynards but who knows what the cause of this is.

Main thing is he works full time and all his bloods are in normal range.

He's been on ruxolitanib three years in February we just hope and pray this medication continues to work well for him. It's been a life changer and given my husband a better quality of life.

He puts his bloods in to be checked every 3mths and his consultant rings him every 6mths now.

Tracey

[tracey13 in reply to tracey13]

I forgot to mention my husband did gain weight he seemed to be hungry all the time. We both started calorie counting and he did lose the extra weight he gained.

Tracey

[MichaelS]

Hello Stripcat, I've been on Ruxolitinib 8 years this month. I had PV from 1983 to 2010, which changed to MF. I was on Hydroxycarbamide until 2013 and then I switched to Rux'. It reduced my spleen more or less overnight and stopped the Rosecea (redness and lumps) on my face. As with others I increased in weight, which I am still trying to reduce. (Weight was good but increased after about 2 years). Also I have had several skin cancers on face and scalp. My haematologist and I have been discussing changing to some other drug, but my bloods are good so skin cancers are a minor problem to his thinking! I am on 10mg twice daily, but started on 15mg which reduced my platelets to 66 in 2 weeks, so 10mg seems right for me.

Best wishes; Michael