Mithridate trial

[Blonde25]

Hi everyone

I have PV and diagnosed in Dec 2022.

I started peg interferon in feb 2023 and I have been on 135mg every week for about 4 months now . My recent Jak 2 allele burden blood test shown an increase from 20.83 % at diagnosis to 35.09% my bloods especially the HC is high and I keep needing venesection every 6 weeks .

I had a letter saying the hospital will talk to me about the mithridate trial when I go for my appointment on the 26.04.2024

Does any one know what the mithridate trial is please or as anyone been on it and had good results

Thanks

Caron Smith

[Ebot]

Hi

I’ve been on the Mithridate trial for the past couple of months. The trial is looking at Ruxolitonib versus best available therapy (peg interferon or Hydroxy) in high risk PV patients.

It’s a randomised trial and I was allocated to the Rux pathway. I’d been on Hydroxy for some years and wanted to change so either interferon or Rux would have been good choices. So far everything looks good.

I’d definitely take up the invitation to explore enrolling in the trial. You have to go through some eligibility checks first. You need to commit to some extra hospital visits in the early stages but you get very closely monitored and you’re in the hands of the very best MPN experts.

All the drugs in the trial are well used so you’re not signing up to anything cutting edge / experimental.

And you get to contribute to the MPN community’s greater understanding and refined management of our disease. Got to be worth investigating further!

Wishing you all the best.

[Blonde25 in reply to Ebot]

Hi

Thanks for the response

I think i will give this trial a go . My only worry is that Ruxolitinib can cause weight gain if they want me to try this medication.

The hospital increased my peg to 180 micrograms a week starting with alternate weeks to use up my 135 dose . I'm booked in for a venesection this afternoon.

I don't like the idea of having more Bone marrow biopsy. I guess though like you said , I should be monitored more closely which is reassuring and I can stop this trial at any time .

Thanks

Everyone for you support it means a lot

[Ebot in reply to Blonde25]

Hi. Yes, weight gain was in my mind too. So far nothing. Apparently Rux can interfere with the signals to your brain telling you you’re full and to stop eating! To date, I haven’t experienced this. (I think!).

As you say, you can stop the trial at anytime. Nothing is written in stone.

I recall that when I went on Hydroxy, I was so relieved to stop the venesections. They were getting harder and harder. Really hope you find a treatment that is effective for you. All the best.

[JP1952]

Hello Caron, Apologies for the delay in responding but I thought it best that your haematologist explain the trial to you before you were swayed by others. So I hope your appointment went well and you have all the necessary information before you make your decision.

I have been on the Mthridate trial for nearly 3 years so will finish it in October. You will know by now it is a randomised trial so you will either take Ruxolitnib or remain on your current medication. I did the trial primarily because I hoped to get Rux for the pruritus but I figured I had nothing to lose by continuing on hydroxy because it controlled my bloods. I did get Rux and the trial has been a positive experience for me. The Rux has stopped the pruritus and for the last 3 years I have had excellent care and been monitored closely . During this time Rux has been approved by Nice so if you and your haemo think it is right for you then you may be able to get it without doing the trial.

I am happy to answer any other questions you have if I can help .

[Blonde25 in reply to JP1952]

Hi JP

Thanks for the response.

I think I will go on the trial.

They increased my peg to 180 micro grams a week , the 135 dose is not controlling my blood . I'm hopeful the higher dose might start kicking in .

I need to go for venesections every 6 weeks at the moment so if they give me Ruxolitnib my only worry is the weight gain you can have .

I already feel fatigued a lot of the time so I'm hopeful it will help being monitored more frequently.

Thanks again

[JP1952 in reply to Blonde25]

Let us know how you get on and good luck with whatever you decide. Like you said you are free to stop the trial at any point.