I have PV diagnosed late last year and since then it's been a bit of a roller coaster of weekly Vx s and different cytoreductive drugs.
I am classed as high risk as history of DVT and PE. I cannot take hydroxyurea as a have history of melanoma and have been on anagrelide which didn't reduce my platelets. Im currently on interferon injections which has brought my platelets down a bit but I'm struggling with the flu like side effects . Just got a a call from my lovely Haematologist to say she's got funding for Ruxolitinib for me on compassionate grounds . I know how expensive it is so am very grateful she has secured this for me. I just wondered if anyone has any experience of Rux. Also any info re: Rux v Interferon for PV . I know here in the UK it's usually o my funded for MF
Any info at all would be hugely appreciated. Thank you in advance and hooe everyone out there is keeping well
Love Dianne
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Dianne-Guisborough
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Initially when I went on it i felt fantastic but have been suffering fatigue of late so my dose has been reduced.
But what i can say is my blood counts have been 'normal' for 2 years now so it must be doing something good. I am hoping the reduced dose sees me improve so i dont have to come off it.
The only major issue i had was getting shingles in the first few weeks which is a common side effect, this can be prevented with other medication if they feel it might be a risk.
Just re-reading your post I can see you refer to your platelets mostly.
Just to give you an idea pre RUX my platelets where usually around 400-450, sometimes nudging over the 450 mark. Since RUX they have averaged about 190 so it does seem very effective in reducing platelet count.
Do you know what does they are proposing? Also do you have an enlarged spleen?
I don't have an enlarged spleen but my platelets have been up to 1.3m and have come down to 575,000 on the interferon. Im not sure how she got the funding or what dose I will be on . Just got the message to come in and see her on Tuesday as she's got funding on compassionate grounds. She had talked a few months ago about approaching the drug company direct to see if they would fund it but I'll find out more on Tuesday. Thanks so much for you advice
on hydroxy my problem was low platelets. after a slightly difficult transition period I an now on ruxo and my platelets are much better - but my reds are a bit low. however the great thing is how much better u feel, not so exhausted. and my spleen has gone from enormous to non-palpable.
i think u r amazingly lucky to get Ruxo with PV - stick with the haematologist that delivered that for u!
Hi Dianne, , really great news that your Hem has secured funding for your Ruxolitinib, it's a bit of a lottery and as you point up the cost it's like winning the lottery. I have been put back on it after my Stem cell transplant and my consultant was concerned it might make my Platelets drop out completely as it is usual for it to lower them. But not the case.
I was averaging about 45 count . . They went to 130 6 weeks ago, then 90, and last Thurs were 99. So I don't know if it is related to my specific circumstance that my Platelets have risen. But I'm not complaining coz I've had enough platelet transfusions thank you.
I'm only mentioning this not to put a downer on your news but just to point up each of us is different and Rux or whatever drug might impact us differently. However I sincerely hope that Rux lowers your level and it's odds on it will. I think it's one of those developing areas where the experts can't be sure how it will go until they monitor our counts over time. So we're all on a learning curve with it.
Thanks for your advice Chris . As you say it's all new territory and I don't think there is much long term use research as it is still so new a drug. I really hope you keep well
hi hero! interesting that ruxo improved both our platelets, possibly against expectations. mine between 48 and 99 on hydroxy now 100-150 and usually in the normal range. i guess it's because hydroxy and ruxo work in such a different way?
Hi Jane, you flatter me with your opening gambit. . . Certainly don't feel anything like heroic when I'm struggling to make sense of my life as oit is, but guess I'm only human in that respect. Good result on your platelets, I must admit I've no idea why Rux oft lowers high counts and will raise low ones. It's predominantly a JAK inhibitor as far as I know but it must be versatile.
HU is a chemo drug that kills cells whether good or bad ones. One of my consultants called it a blunt instrument. So maybe Rux is a smart drug by comparison.
We're fortunate to get it and long may it continue to stabilise your counts.
Hi Dianne, sorry to hear about your health issues. Yes I used interferon for a couple of years, but it didn’t seem to do much, relieved a few bone aches but not the pruritus. I found UV radiation good for that. I have been on Ruxolitinib for 4 years now and it would have to be my no1 treatment choice. I was diagnosed in 2010 and given three to 5 years. I am 78. Ruxo has really improved my use by date. So look forward to it with confidence. It works for most MF patients. All the best ....Pete
Thank you so much for your message Pete . I am so pleased to hear you are doing well on the Ruxolitinib. I have been on it approximately 20 months now and am pleased to say my blood counts have been good with no obvious side effects.
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