Experiences with

Ruxolitinib

Morning all, I have post PV MF, taking Ruxolitinib, and have been invited for a flu jab for the first time.

I have been participating in the Majic Study for a year; I am doing well on ruxolitinib. This medication is controlling cell production, and the fatigue and pruritus that was making me so poorly before I joined the study is a lot better. I feel very lucky as I have a much better quality of life.

We propose to test Ruxolitinib (a JAK inhibitor approved in MF and patients with advanced PV) and compare it to Interferon or Hydroxyurea (Hydroxycarbamide).

Is there anyone else out there who has been lucky like me and got Ruxolitinib long term for PV and everything become normal?

I've been on higher doses of cortisone the last month or so to get over a chronic GvHD in my liver, after initial improvement things have regressed, my consultant is seriously considering replacing the corticoid by Jakavi (Ruxolitinib).

The experts reviewed promising results of recent studies, including telomerase inhibitors, antifibrotic treatments, the long-term benefit of the JAK inhibitor, ruxolitinib, as well as news about the promise of early intervention.

& advice anyone in same position or already tying the Ruxolitinib

I am no advices to go on Ruxolitinib tabs I would like to here any advice & help,

Last September I progressed to myelofibrosis and was prescribed Ruxolitinib with Aciclovir to prevent shingles. I also take Anagrelide still to control my very naughty platelets that soar at the most inconvenient times but are always quite high.

He has just started on ruxolitinib in place of the hydroxycarbamide, but has been told by his gastro consultant that the only option to stop the bleeding is to have his spleen removed.

Naval Daver, “Can the effectiveness of ruxolitinib (Jakafi) be impacted by missing doses?” Listen as Dr.

Ruxolitinib should be available on the NHS within 3 months of the guidance being issued.  If you are not eligible for treatment you should be able to continue taking Ruxolitinib until you and your doctor decide it is the right time to stop. 

I have been to both hearings on this. The first was obvious it was going to be refused and a number of people on that team at the drug company lost their jobs afterwards. Second time around it was more positive. Prof Harrison was shut out of attending the first appraisal but not the second. I like to

I'm still taking the ruxolitinib ..6 a day ..feeling o,k, .the proffesor has asked me to keep taking it while I under go surgery so they can monitor me ! I'm taken off the magic trial now ,it was to be 3 years.

You can sponsor Cara on her Just Giving Page at http://www.justgiving.com/Cara-Fraser1 Jacqueline and John Graham – Charity Fashion Show 14th March Jacqueline, who is taking Ruxolitinib to help relieve the symptoms of her Myelofibrosis, is one of the wonderful supporters who volunteered to help

Hi is anyone on ruxolitinib trial iam on hydrea but iam having problems with my feet like walking on stones i have been on hydrea 9 years consultant advise me to try and get on trial for this drug any lnformation thank you

The drugs improve disease-related symptoms and reduce spleen size, and one drug — ruxolitinib — was approved by the FDA for MPN patients.

Now though I've been advised to take Ruxolitinib and it's scaring the pants off me (was advised to read the leaflet thoroughly - scary read!!) and I'm wondering if anyone out there has taken this and can give me some guidance as to how their journey on it has been? Many thanks.

Here is the abstract from Hasselbalch combo: http://ativsoftware.com/appinfo.php?page=Inthtml&project=ASH15&server=ep70.eventpilotadmin.com&id=85751P I have all the slides from this outstanding presentation, butcould not post from my gallery. Check most of the mpn FB groups or PV Reporter FB page.

This decision is based upon cost not upon effectiveness of ruxolitinib which NICE agrees with.