Hi I'm jr3093

[jr3093]

19 years with Pv, and now I'm blessed with mf. By attending a forum I found out about this organisation, but that's what they're for.

[mhos61]

Welcome to the forum jr3093. I'm sure you'll find it beneficial. Shame you didn't find it before now.

Mary x

[jr3093 in reply to mhos61]

Thanks, still trying to get my head around the website but the locals seem friendly enough!

[jillydabrat]

Hi JR, hope you find this forum as helpful as I have. This is a first point of call for me for any queries. Would you mind if I asked you how old you were when you progressed to MF?

Best wishes

Jill

x

[jr3093 in reply to jillydabrat]

I was 68 and been on hydroxycarbamide for nearly 20 years, regards jr

[eire]

Welcome to our club!!! I'm 66 and have MF just over 8 years. Any question please ask and we'll try to help.

All the best.

Pat

[jr3093 in reply to eire]

Thanks, no problems at the moment

jr

[lizzziep]

Hi JR, welcome to a very exclusive club! 😄👍

[jr3093 in reply to lizzziep]

Thank you, I look forward to becoming exclusive!!

[Fika500]

Welcome JR3093! You have promoted me to ask a question if our members.

I have a query to those of you taking Ruxolitinib as haematology are discussing whether I should start it. I had PV for about 28 years ( diagnosed aged 46) and did well with regular venesection but about two & a half years ago it progressed to probable Myelofibrosis ( they haven't done a BMB - therefore 'probable' but I think they're pretty sure) The gout is under control with Allopurinol. My main symptoms are an enlarged spleen (23cm two years ago) and fatigue which is definitely affecting my quality of life- I simply can't do everything I'd like to/ can't walk as fast as I used to / tire easily etc and I fall sleep a lot and am more prone to fevers/ infections and losing weight. Strangely I have fewer sweats compared to my PV days and the itch is gone.

My platelets are going down and we're only 56 last week. What can I expect if I go on Ruxolitinib? My concern is that it can bring platelets down?? Do the benefits outweigh the risks in our members' experience? I would be grateful is anyone could tell me their experiences- good or bad- with Ruxolitinib.

Thank you.

[jr3093 in reply to Fika500]

Hi Joe,

My experience with Ruxolitnib is limited to seven months.

However, at the time of my BMB, I was in a poor way, easily out of breath and could fall asleep just as easily. Since I started on the Ruxolitinib everyone keeps telling me how well I look and I must admit I do feel a whole lot better.

So that is my experience, we're all different and will react differently. Once you've had your BMB and a more definite prognosis can be arrived at, a course of treatment can then be implemented. The platelet count can be tweaked with medication, as can any other abnormalities, whatever happens, good luck!

[Fika500]

Thank you for your reply and I'm encouraged that you feel a lot better,

[Mazcd Partner MPNVoice]

Hello JR, welcome to our forum, glad that you have found us. We are a very supportive bunch of people so anything you need to ask please do. Best wishes, Maz

[Nesta53]

I am Mpn unclassified after two bombs. No consensus. Have many other illnesses. I have had continual numbness, especially in my hands for many months, and is progressing. Am on Jakafi.