Ruxolitinib: Had my first haemo appointment today... - MPN Voice

MPN Voice

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Ruxolitinib

Graham7694 profile image
Graham7694

Had my first haemo appointment today since starting Ruxolitinib 2 1/2 weeks ago. My bloods were all good and my platelets have moved down (albeit slowly) to 800. It is going in the right direction. Symptoms have improved particularly the itching (unless I have a very hot bath and even then is far better than before) and my feet are not burning so much and also improvement in calf pain. I think energy is starting to come back and is greatly improved by drinking lots of water so generally I feel quite pleased

9 Replies

Great news. I hope things continue to improve for you. Karen

Graham that's great news. Onwards and upwards. Or downwards in blood counts in our situations. You are on front line treatment that may be available to more of us in the future. Great that the itching is nearly gone. Plus burning feet. Keep us posted on your progress.

Mairead

Peter18 profile image
Peter18 in reply to MPort

That must be cheering news for you. Keep us posted on Ruxolitinib progress. Best wishes, Peter

Really good news it's doing its thing. Long may it continue.

I'm very pleased you are feeling better graham ..I too have had the surgery to remove my gall bladder ,also I had keyhole to remove a hiatus hernia ,last year ,,so without a doubt the treatment we take for our MPN will affect our gut . Let me reassure you ruxulitnib is excellent for controlling your blood count results as I have trialed it for 4 years .but your eating and drinking is all important in your well being ..don't have canned food or drink ..eat fresh if possible ...cut down the red meat it blocks the gut ,,the lighter and smaller portions will leave you more comfortable .. The acid in wine and fizzy drinks is so bad ,it's best to cut them down ... You are. What you eat is so true ,,,,,. Twinkly. Xxxxxx

Really pleased for you. Mel

That's great news! Are you MF or ET? I was under the impression that Jakifi is not 1st line for ET or PV unless there's progression in MF direction.

I am MF 😩 but low risk 😀

Graham, It is really great to hear that you response has been so good. It seems Jakavi is the one of the best treatments available.. But the best part presumably is hopefully how much better you do and will feel in yourself. My sense and experience is that it is important (as Twinkly wrote), to watch with determination what you eat and how you care for you self. Meanwhile enjoy the itch-free showers and washes!! All the best. Jan

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