Taking both HU and Pegasys?

[MPNBlog]

I'd like to hear if people have successfully taken both HU and Pegasys together, and their reasons for doing this. I have noticed a couple of posts recently where people mentioned they took both eg Mocha 38 yesterday re tinnitis. My issue is that on HU, my platelets cycled wildy from extremely low to over a million even on a low dose (I had reasonable reduction in other counts esp Hct). I went on to Pegasys about a year ago (45ug fortnightly at the end) and had the best blood counts since Dx (Feb 2017). But the fatigue was really bad. And then I got pericarditis. As it was unclear if Peg was the cause, I have stopped all cytoreduction for the last 3 months while pericarditis is managed. But I need a plan going forward as platelets are starting to rise. Anagrelide is under discussion, which I am not keen about due to side effects. Or I could try re-introduction of the HU or Peg. Each had their benefits (and side effects) so I wondered about low dose of both. I'd be interested to hear if others have found that taking both drugs works (and why they've chosen to do this) and if this is effective in controlling counts. Many thanks.

[JojoWonder]

Hello, At one point I was taking both Hydroxy & Peg. I started on Pegasys alone, when first diagnosed in early 2019, but it had little effect and as my platelets were over 1100 my Haematologist added in Hydroxy to try to kick start a decline. It worked and my platelets started to drop. This was a relief but I felt quite unwell, a gradual realisation rather than an immediate feeling. I was taken off Hydroxy and thankfully my levels are very agreeable on Pegasys on its own. I was told that Pegasys is a slow acting drug and can take some time to work. Mostly I get on well with Pegasys. The main side effect is occasional low mood and feeling very irritable. It’s a feeling unlike a normal feeling down more like a woman’s hormonal issue like PMT. Most weeks it’s okay then Bam! Watch out world!I hope you’re able to come up with a good treatment programme that works well for you.

Take care x

[MPNBlog in reply to JojoWonder]

Hi JojoWonder. Thanks very much for those insights from your experience, it's very helpful. We are all so different. I see the cardiologist 10 December and then it will be decision time about meds. Thank you.

[Helpatlast]

Hi - yes I had a time last year when I had to be on both HU and Peg - although for me it was after 13 years or so on high dosages of HU which started not to be effective anymore and my platelets were going sky-high no matter the dose - so I was switched to Peg but for six months I had to do both as Peg does take a long time for many to kick in - I did find it very hard going on both meds as yes both have their side effects I was sort of used to HU effects after all those years but then putting the effects of starting Peg on top I did find very hard - I don't know that for anyone long term using the two would be a usual plan by consultants - but as with all things it depends on your individual situation and specific advise of your consultant for you - I am 18 months on now on Peg alone and do still find it's effects not easy and can only tolerate the lowest dose - it kept my platelets really good last year not so good this year - and it's so individual the effects on each of us. Hopefully you have a good MPN experienced consultant who can advise you well. Keep us posted.

[MPNBlog in reply to Helpatlast]

Thanks for your reply Helpatlast. Sounds like you have had significant side-effects to tolerate/manage, which can affect quality of life. Like you I can only tolerate lowest doses, but low levels still have a good effect on bloods for me. I'm going to see if I can take 45 ug Pegasys once a month and 3x 500mg HU/week. They both operate in different ways, and hopefully that will reduce side effects from both. I will get back after I see the haem. Many thanks and best wishes.