ET :Hydroxy to Pegasys

[Goosebumps52]

Hi All,

I've been on hydroxy for 3 years and gained a belly and 4kg over that period...grrr! As someone who always works hard to remain slim and fit, I find this change too challenging and would like to try a better control drug for my platelets. As they are now very normal, I would like to think my specialist would be receptive to my need. The first time I asked he balked at the thought.

The alternative drug in Australia is the injection Pegasys (also on our PBS - hence low cost), which I would like to try. Could anyone who made this switch please give me an idea of their success or4 otherwise, especially weight. The latter is my only drawback re continuing with the hydroxy. It's just too hard to continue on with this frustration.

Thanks for your input.

Cheers,

Anna

[hunter5582]

I was refractory to and intolerant of HU. I experienced toxicity even at low doses. I have done much better on the interferons (Pegasys then Besremi). The IFNs have been more effective and much easier to tolerate. Note that is for me. We are all different.

Pegasys is a well recognized option to treat ET. It is one of the preferred options per the NCCN guidelines. In the absence of a medical contraindication, it is your prerogative to pursue Pegasys as your treatment of choice.

Here is some information that may help make the case.

nccn.org/patients/guideline...

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

[ciye]

I took hydroxy for 12 months gained 3 stone switched to peg and lost 3 & a half stone, but I was so ill with peg that I was barely functioning my platelet count barely moved. Reluctantly I switched back to hydroxy after 15 months on peg and have gained 4 stone plus. My Heamo is unconcerned, only other end I could try is Anagrelide and that can cause really bad palpitations peg did that and in the time I took peg I must have had 12+ ambulance trips to A& E with suspected heart attacks after having ECG at home.

So many really benefit from peg and if you can tolerate it, long term it's probably more beneficial than hydroxy. I was hoping Bomendast would be available soon but not sure it will be this year.

[Janis12]

Hi, I have been on hydroxy three years and I am currently transitioning to Pegasys. I actually lost about half a stone on hydroxy which I could ill afford as I only weighed 7stone 6pounds and I eat like a horse although I am very active. Currently taking both hydroxy and peg but reducing my hydroxy as my platelet levels reduced significantly after only 8 weeks on peg. It was my choice to change meds after educating myself on this forum, no side effects as yet...fingers crossed. Good luck.

[Na56 in reply to Janis12]

Hi It’s great to hear that you’re getting on well with peg. I’m very interested in your journey as I would like to try peg too . I’ve an appointment at Guy’s in early Feb and am now getting a bit nervous about possibly changing from hydroxycarbemide.

Have you found the peg injection straight forward to do? And no side effects at all? Are you on 45 every fortnight? How often are you having blood tests?

Hope you don’t mind my questions. Thank you Irene

[DougyW in reply to Na56]

Peg in the UK is injected via a pen, so is easy. No measuring the dose. My Haemotologist said for me to start Hydroxy but I questioned that and with no struggle Peggy was agreed. Yet to start but again a low and slow introduction has been agreed as I have no current bad symptoms.Let's share notes and beat if luck.

[Na56 in reply to DougyW]

Hi I’m just gathering as much information and experiences on Peg as I can before I have my appointment at Guy’s.

I hope you get on really well with Peg .

Kind regards Irene

[Janis12 in reply to Na56]

Hi Irene, the injection is straight forward but not a pen as DougyW indicates, the syringe is loaded but I have to push some fluid out to get my dose. The needle is very fine and I use either my legs or stomach, it does not hurt. The nurse talked me through it and watched me first time and there was also written instructions in the box. I am being reviewed every 6 weeks, Thursday will be my second review and I am hoping they will reduce my hydroxy even further. I had been a bit itchy when first starting peg but that has gone off now and also about two hours after the jab I have a ten minute period of being shivery then it goes off. I do feel a bit 'flat' at the moment so that could be something to do with peg (known side effect) although I think it is more likely to do with my aches and pains which in this cold weather just seems a bit worse. Hey Ho, still cycling, walking, gym and swim....with a bit of effort! Oh yes it's 45 every fortnight but lets see what Thursday brings. Good luck with your appointment at Guys.

[Na56 in reply to Janis12]

Thank you for letting me know how you’re getting on. Hope it all goes really well for you.

Kind regards Irene

[light]

Hi there, ET with Oak 2+ was on Hu for 2 and half years with ulcers in my mouth, putting weight on etc.. I asked my MPN doc to change to Pegulated Interferon Alpha 2 and was on different dosages but 135mc for a long time every four weeks (8 years) and since we came out of lockdown I am on 45mc every four weeks. I may have some reaction after taking injection for a few days, (like flue reaction). Works for me. Wishing you well.

[Exeter21]

I am on Peg Interferon aged 69. No weight gain whatsoever on this . I eat sensibly low carbs etc lots walking , water. 👍. I was on Hydroxy but body rejected it. I am v happy on interferon low dose monthly 👍.