Hi can anyone give me some information about how they felt starting on Ruxolitinib. My consultant wants to start me on this but I am not sure how I feel about it - so some for and against answers would be helpful. I had been on Hydroxy for about 20 years but stopped a few months ago as leg ulcers etc were not healing very quickly.
Thank you Sodabread.
Hi Sodabread, I was Intermediate 2 MF when I went on Ruxolitinib. I jumped at the chance because I felt fortunate to be given the opportunity to try this 'wonder' drug via The Cancer Drug Fund because of the crazy cost. I hoped it would be my Golden Ticket to alleviating symptoms and staving off the only other alternative, being SCT, for several years.
Well almost immediately symptom wise I felt tons better. Itching gone, fatigue minimised, no mouth ulcers, great appetite and my general well being and mood lifted considerably. Sadly for me it was relatively short lived because my underlying MF ramped up during the following 15 months or so. But I wasn't given the option to try twinning it with another drug which might of bought a little more time. I don't regret taking it one bit. In fact I took it again for a time post Transplant to help counter my Graft Versus Host Disease.
Up to you to decide what's best for you but depends where you're at and what options if any you have beside Rux.
Hope you get some positive responses because I'm sure many folk are reaping it's benefits and very grateful to be taking it.
Chris
Hi Sodabread - I have MF and was put on Ruxolitinib two years ago when I progressed from PV. I had been on Hydrea but didn’t tolerate it well. I agree with everything Chris has said about Ruxo. It got rid of the awful itch, reduced my spleen size and gave me back an appetite. I continue to suffer from fatigue and am prone to occasional infections but otherwise I feel so much better. I started on a low dose but am now on 20mg twice daily. You didn’t say if you have progressed to MF but whether or not I wish you the very best of luck with your decision. Ettiel
I have been taking rux for years I have primary mylefibrosis i have really bad symptoms so I started at 20 twice a day but iam now at maximum dose 25 twice a day it’s not working for me anymore and my team want try to either pair it with a trial or begin sct but rux did work for me for years my spleen shrunk a little I could eat my symptoms were less and was able do more for a long time I was grateful to have it it wasn’t available to everyone at the time and I was grateful my doctor fought for me to have it and it’s helped a lot it’s not all great there are risks skin cancer I have had it through rux infections are common rashes dry skin you have decide what’s right for you the risks to the rewards for me it was a no brainier but I wish you luck whatever you decide take care leighanne
I started ruxolitinib 5 mg 2 weeks ago . So far no side affects and too soon to show positive affects
I have MF. I Have been on Ruxo for several years now - no more itchingor sweats etc - improved eenergy levels, but also as a side effect of big weight gain and increased anaemia. My consultant is considering reducing my dose (15mg twice a day) in order to reduce the weight gain. I am now having to have three-weekly transfusions rather than four weekly, which may, or may not be due to the Ruxo. However overall I would say that it is definitely worth taking. Good luck SkipperL
I was fortunate to be granted the opportunity to start Ruxolitinib via the Hospital Trust's Cancer Fund. That was 6 years ago now. Nothing else before it helped. As soon as I started Rux my liver and spleen started to reduce in size so I could eat again. I am now in my 7th year of primary MF and now aged 57 years. Ruxolitinib has definitely helped give me my life back. Yes I still get fatigue and night sweats but my spleen and liver have remained reduced. I would definitely recommend it. All the best for your decision.
I was put on ruxolitinib for my pv after 2 years on hydroxycarbomide, during which my white cell count peaked at 30. I was a bit dizzy for a few days after starting it but that soon settled down. Within a few months my spleen had reduced in size, my white count came down to 17 and the itching stopped. I've now been on it just over 2 years and my white count has crept up and is now back to 30. I've also been getting twinges of discomfort in my left side. I'm still on the same dose that I started on. 20 mg a day.
I have Primary Myelofibrosis and have had it for many years. I am now 68. I was put on Ruxolitinib about 8 years ago and have been very grateful for it. The dose had to be adjusted a few times because my platelets and Hb dropped but it has reduced my spleen a bit and removed all the other symptoms of MF. I now take 25 mg daily. I am so glad to have the opportunity to benefit from this drug, though I know it doesn't always work for everyone. We are all so different in our response to this condition. I do wish you well.
Hi SodabreadI can honestly say that 14 months ago when diagnosed with MF Rux was my miracle drug. My spleen began to reduce, I could eat more, no itching, fever, night sweats, in fact I felt more 'normal' than I had for years. Such a relief. As I was diagnosed during the pandemic I only say one doctor, who told me that the 'team' had decided that this was the best way for me to go. I am still taking it ( a lower dose than originally) 15mg twice daily. I still have the dreaded fatigue, but also have to have blood every two months, to keep me topped up.
I think we always wonder if this is the best way for us, and I am therefore going to see Prof. Harrison at Guys on Monday for her opinion. Always praying for a miracle cure. I will post if there are any revelations.
Dancingelephant.
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