Myelofibrosis life expectancy

Hi. I’m 55 female & have had Essential Thrombocythia /Rheumatoid Arthritis for 15 years now & been advised to go onto using Ruxolitinib as existing meds of Hydroxycarbonide/Methotrexate/ Dipyridamole/folic acid are not decreasing my platelets? Constantly high . Rarely under 800.000- 900,000. Sometimes higher . I had a mini stroke at Xmas . I am apprehensive about starting this & have never been told how serious my condition is . I am a very positive person but after looking this up it concerns me. Can anyone help or give me any advice . I would really appreciate this .

Thank you .

[jane13]

Hi, am a bit confused: have u now been diagnosed with MF?

[Vennie]

Hi there, I have a similar story to you - ET/Arthritis/Stroke (also Jak2) so just giving a little reassurance and support to you. Possibly the change in meds is just to see if the platelets will reduce more on new medication. I initially took Hu but now on Interferonalpha and my platelets are within range so it might just be the old meds have run their course (if you get my drift) If not, you need to ask directly the reason for the change. Bear wishes and hugs V

[Hidden in reply to Vennie]

Hi Vennie.

Thank you so much for your help & reassuring words. Sorry about my heading . Yeah I just got a fright when I looked the life expectancies of the disease so I have an appointment with my Haemo clinic soon so I will ask more questions & hopefully get some answers? Hope all goes well with you too.

[Vennie]

I have just noted your heading - Myleofibrosis Life Expectancy- so maybe my earlier reply is not valid so please seek further clarification from your medical team.

[BlushNoisette]

Hi Gill,

I have had PV for more than 10 years and I am taking Ruxolitinib via the Majic Study. I have been taking this med for two and a half years and it has made a huge difference to the quality of my life. It controls my bloods very well and the itching, fatigue, joint pain, etc is hugely improved.

The down side is that it can cause weight gain and constipation, and increase risk of shingles if you have ever had chicken pox.

I have put on some weight so I am more careful with my diet, and I manage the constipation by taking 1 movicol every day. I had shingles last August and so I now take Aciclovir to prevent further episodes. Otherwise, I am fit and well. I am 66.

I do hope that this info helps you.

Very best wishes,

Lyn