Ruxolitinib Relief Trial.

[maestromaverick]

Hi all . Just an update on my trial experience . Was unblinded today to find out I'd been taking my normal Hydroxy for last 24 weeks and from today will be taking Ruxolitinib . Just hope I get to feel even a little bit better . Hope you are all feeling as well as possible cause your a great bunch of people and you and this site have kept me going through some pretty horrible times , the last one being a 7 day stay in hospital , being pumped full of antibiotics for Urosepsis . Stay hopeful and strong .

[Twinkly]

Hi maestromaverick.im already taking ruxolitinib .been on it for 6 months ,and I am very well ,my bloods at the clinic this week were the best ever yet in 2 years. It does play up your digestion however,,I have to adjust my whole way of eating,otherwise I have incredible gut upsets, small snax every 3 hours ,fresh food and juice,lots of water,absolutely NO JUNK FOOD. I take a vitamin C tablet every day.get back to me if I can help you ,,I'm only too pleased to give you any tips I have learned,,twinkly. Xx

[Bigmann1 in reply to Twinkly]

Hi how are you? I just started jackafi for two weeks now still waiting for the drug to kick in! Are you still taking it and how are you feeling?

[Hidden]

Wish you all the best. Hope you get some good results and sorry to hear of your recent ordeal. I second what you say about members of this site. I don't feel so alone when I hear of many with same problems and how they always try to help whatever the problem. I appreciate the support. I have had a recent bout of depression, whether or not connected to my condition or not I don't know but with treatment I am starting to feel better and thank everyone for continued support.

[linds in reply to Hidden]

I am really sorry to hear you have had a bout of depression CrazyDaisy, I do know what that is like and am only too pleased to hear you are coming out the other side. It's the random panic attacks that come with it that truly upset me. I think it may be part of our condition but whatever the reason the misery is the same and it's good you are getting help. With a name like Crazy Daisy you must be joyfull, I always smile when I see your tag.

[Aime in reply to Hidden]

Hi Crazy Daisy, sorry to hear about your depression. i ended up going on Setraline tablets last year (anti-anxiety plus mood changing) as I was really down, especially as I had lost my mum and dad and found out I had PV all about the same time. It has made an immense difference to me - it helps me put things into perspective and also actually look forward to things - which I had stopped doing. Every best wish Aime x

[selkie]

Im just into my 3rd month on Ruxolitnib and i assure you, you too will feel much improved on it! All my blood counts have stabilized and Im sleeping better. I've experienced no adverse reaction this far. I even took off to the Canaries for a month at Xmas and missed all the fuss and expense and cooking! I survived the 4 hour return flight stroke-free too!

Of course I've a big clean up here at home due to storm damage, but i've got on with it. That's life, isn't it? And the longer we get to live normally the better, thanks to these new drugs. Selkie

[Bigmann1 in reply to selkie]

Hi are you still on the ruxo? How is it doing for you?

[linds]

Good luck on the Ruxolitnib and thank you for having been a 'trialist'. It's because of people like you prepared to take a chance that these newer drugs are being used. It's great to hear of others experiences too.

Best wishes to all here and well done Selkie for leaping into the sunshine. I hope it did you good and that the storm damage was not too bad.

[Mazcd Partner MPNVoice]

Hi maestromaverick, I hope it all goes well for you with the Ruxolitinib and that like Twinkly it makes you feel better, Maz

[eire]

Hi Maestromaverik,

I've been on Rux for 16 months combined with Panobinistat. It took a while to get used to the drugs but gradually I started to feel a lot better and now after 15 months am doing really well. It's really a case of how you cope with the problems -when I'm really tired I go for a walk -I tend to graze as opposed to trying to eat a 'proper' sized meal and I always ensure I have access to a bathroom as the drugs do play havoc for a while. I'm taking wheat grass capsules and eat loads of spinich/brocoli/cabbage and since I've started doing this my blood transfusions have decreased from weekly to near enough monthly. Don't think this is a coincidence diet really is important and of course loads of water. Hope this helps you and good luck we are all so different you may not have any problems with the drugs!!! -fingers crossed.....

[geordie]

Hi am glad that some of you are successfully taking Rux, however, I had to come of the drug after the blind trial as my bloods started to rise even when I was put on a higher dose. Did not want to take the risk of stroke as I had already had a number of minor strokes before being diagnosed with PV. I had to go back on hydro on a higher dose of 3 x 500g per day. last count bloods dropping but still on high dose, hope to reduce next visit to hospital. Like wise posts come to my email I find that often my fears are settled when I see that others are also feeling the same symptoms

is good to have this support.

[LouisePRV Volunteer]

Hi

Hope the new drug works wonders. xx

[Aime]

Hi Hope the new drug works for you, especially after what you've been through. Thinking of you. Kind regards Aime

[maestromaverick]

Thank you for all your responded . Its pretty clear that Ruxolitinib is making a difference to some but not all and that makes me sad and a bit scared but got to give it a go and I feel lucky at the moment , but only time will tell . Just taken my third dose with some trepidation but its fingers crossed . Absolutely dread the thought of having to go back to the Hydroxy but also need to remind myself that its kept me alive . Thank you all again .

[Hidden]

Hi

Thanks for all your support everybody in our "club"! Like Twinkly, I believe diet makes a tremendous difference and eat absolutely no junk food. I have even gone off chocolate which I was a bit addicted to all my life. I constantly "trial and error" with what affects me positively and negatively and have eradicated a lot of my stomach problems because of this. "My Bespoke Diet". I know what you mean about not looking forward to anything Aime. It's just hard sometimes to know as what stage you decide "I have a problem". Better late than never though and Fluoxetine has much improved my outlook and broadened my horizons again. Thank you also Linds for your kind words. You are all very valuable to me.

[Twinkly in reply to Hidden]

Hi there crazy daisy( love the name) I can't believe you can have depression with this name!! We all need a hand to help us over that mud puddle of life ,don't we? That's what makes us human ,and I bet many of us with these MPD,s( all sorts) get down and sad at times ,tears are natures way letting go .old love .so we are here for you ,good mates is what we are !!!xxxx

[Hidden in reply to Twinkly]

Thanks Twinkly I feel much better now. I suppose even clowns get sad sometimes! I am still crazy and like it that way. No-one outside would have known I was "in the dumps" just me and my long suffering husband I suppose. As with Aime, it didn't come for no reason (too many hard knocks all at once). However this IS life and we have to get on with it. There are always people worse off and sometimes even feel apologetic having to say a wee prayer (I am not particularly religious) because in the great scheme of things my problems seem trivial.

[Twinkly in reply to Hidden]

Trivial you ain't,incredible is what you are, Xx

[Hidden in reply to Twinkly]

Thanks Twinx, so are you.

[hackett]

To Maestromaverick and all the others on Rux. I feel like a little bit of an outsider intruding on a group that seems so wonderfully supportive. There are so many things I want to respond to in this stream-thread , whatever it is called, that if I did it would be a confused babbling mess. So rather I'll simply concur that it does seem that these kinase inhibitors work with some of us and doesn't with others. If it works for you enjoy the moment, breath it in deep, it is a blessed moment at the very least. I was on the SAR... or Fedratinib trial until it was axed, The "remission' was heavenly, though it ended all too unexpectedly and abruptly. Now I am back to wading thru the mud puddles of life (as Twinkly so aptly put it) though at times they seem more like endless swampy paddocks with lurking crocodiles. And then when I go to Sydney for my regular check ups and see those suffering much more than I ever have, (yet mostly with uplifted spirit and hope) I ask myself almost guiltily what it is that I am complaining about. Maybe one day we all will have an opportunity to benefit from a better or more effective inhibitor but so meanwhile I say thank you one and all for the good vibes and spirit in your thoughts and messages