Drug trial

[Splb3317]

Hi every body. I wondered if anybody with PV has been asked if they would like to take part in a drug trial. I've had PV for 4 years and was on Hydroxy for3 years. I've just had to stop taking it because I was having regular cellulitis on my legs and was virtually living on antibiotics. My haemo took me off the Hydroxy and, like magic, the infections stopped. Now, I take nothing but aspirin. My hct is OK but my platelets are rising. When the red count eventually goes up, I presume I'll ,need venesections. My haemo suggested I might be interested in a drug trial being run by University Hospital of Wales in Cardiff. It's complicated but it involves a rare drug called KRT-232 . It's very complicated and I think Ruxolitinib is being used as a comparison. I've just received all the info and it sounds complicated with horrible side effects, so I think I .'m going to say no to the trial and ask my haemo for ruxolitinib as my alternative to HU. I would be interested to see if anyone else has been offered the trial. Also, how have you got on with Ruxolitinib for your PV? Thanks. Apologies for the essay!!

Sandra

[Aneliv9]

The only certain thing I know, is that this drug is a new class of drug and very very promising because of it's new way of treating PV and maybe ET. I think i would participate if i was you!!! Of course i don't know details!

[Splb3317 in reply to Aneliv9]

Thank you. That's interesting. Sadly, some of the side effects of the trial drug are very rough and are putting me off.

Sandra

[tracey13 in reply to Splb3317]

I always think it's worth a try and if you do suffer side effects you can always stop it.

[MCW22]

I was changed over to Ruxolitinib after 2 years on hydroxycarbomide. I've been on it a few months now. I was a bit dizzy for the first few days and after that no side effects at all. It has reduced my spleen size and so the pain associated with an enlarged spleen. It has made me anaemic but that is being balanced out with a few iron tablets now and again. So far so good.

Carol

[Splb3317 in reply to MCW22]

Thank you Carol. That sounds promising. I'm still thinking about the drug trial and will try to get more information after C hristmas, but Rux sounds like a good alternative. I'll talk to my haemo about it when I next see him in January. Thanks again.

Sandra

[Susana7]

Hi Sandra, I have PV and have been on Pegasys interferon for over 4 years. It has normalised all my counts with minimal side effects - and none at my current dosage of 45 mcg every 3 weeks. If I were you, I would ask to try Pegasys next, which is a trialled and tested way of treating PV, with high rates of success (some 70-75% according to recent research), for patients of all ages. If for some reason you don’t do well on Pegasys (for example, it can exacerbate depression for those prone to it) then you can always consider Ruxolitinib (whose effectiveness is time limited) or more experimental drug therapies. Best of luck! Susana x

[tracey13]

Hydroxy side effects are hurrendous when you read up on it.

My husband was terrified to go on hydroxy because of the side effects.

He actually had no side effects at all so he worried him self sick for nothing.

He's now on ruxolitanib and again no side effects .

[hunter5582]

I am also JAK2+PV and was on HU following an incident of post-surgical reactive thrombocytosis spiking my platelets. After about a year on the HU (the third time I have been on HU in 30 years) I had to quit the HU as I was getting toxic effects even at low doses. I am on an phlebotomy-only treatment regimen now. So far so good. if you have to go back to the phlebotomies ()aka venesections), be assured that it is an effective way to treat PV and in my experience works better than chemotherapy. Like any treatment, there can be adverse effects. The docs over-phlebotomized me and I ended up so iron-deficient that they could not even measure my ferritin levels. This has greatly lowered my red blood cell levels, though it does nothing for platelet count. Regardless, dealing with the anemia is not as bad as the side effects of the HU. Going forward, we will just be a bit more cautious with the phlebotomies and see how it goes.

I will have to look into the KRT-232 as I like learning about out emerging tx options. For myself, if I do need to go back to chemo, I would likely choose one of the peg-interferons or possibly Ruxolitinib.

Wishing you all the best.

[Splb3317 in reply to hunter5582]

Thank you all so much for your replies. Looking through the various options that you've suggested, I think I'll talk to my haemo about Ruxolitinib and peg interferon. HU is no longer an option. I've decided against the trial, because of the side effects, but I hope it will continue and achieve positive results for all PV sufferers. Thank you all again for your really helpful suggestions.

I wish us all a very happy Christmas and as healthy a new year as we all can achieve.

Kindest regards, Sandra.

[Manouche in reply to Splb3317]

Sandra, historically speaking we could say that

1) In the 18th century, the main treatment was « wait and pray »

2) In the 19th century, bloodletting was the rule

3) In the 20th century, chemotherapy was our only hope.

4) The 21st century is the time of maturity through the revolution of Immunotherapy and genomics

[rkhabtec]

Hi I also have PV and was diagnosed with it Feb 1 2018 and started on Ruxolitinib which is Jakafi20mg It made my spleen shrink. I also take Vitamin with iron I stay on 3mth blood work and have been good since started it. I am very happy with it Would recommend it..