Switching from hydroxy carbamide to Peg interferon

Greetings All,

I'd like your opinion about a considered change of meds from hydroxycarbamide to peg interferon that I take for my ET.

I've been on hydroxy for 26 months now and gained weight (about 5 kg) despite being a habitual dieter. Perhaps at 70, one shouldn't be too concerned, but sadly I am. My platelet count is back to normal and it looks like I'm on a 500mg daily dose of hydroxy for good. As my weight upward spiral continues, I am about to ask my haemo to switch me over to the injectable peg. The last time I brought up this subject he talked me out of changing.

I would love to hear from anyone who has made the switch and seen a change in weight...hopefully downwards. Thanks in advance 😀.

[hunter5582]

I made the switch and I am glad that I did. I was not able to tolerate HU, experiencing toxicity even at very low doses. It did OK on platelets but did not control the erythrocytosis. After going odd HU for a while, I started on Pegasys 45 mgcgweek. It took about 8 weeks to bring the platelets to target. PEG has been both more effective and much easier to tolerate than HU for me.

We are all different in how we respond to these medications. PEG is recognized as a viable treatment option for ET and PV. In the absence of a clear contraindication for PEG, it is your preference that should be the deciding factor in this decision.

Wishing you all the best.

[RazB]

Hi, I have been on Hydroxy for many years and have put on weight. I asked consultant about it and she said there’s no known link so I put it down to “life”! I am just switching to Peg and for me it’s not been easy, lots of very big side effects and difficulties, consultant has now taken me off Peg for a month to give me a break and then I’ll hopefully tolerate it when I start it again. If Hydroxy is working for your platelets and you are tolerating it that’s really positive and important- I’d try and focus on that and maybe find some good support for helping with your weight gain if you are unhappy with that side of things? Best of luck and stay positive 🙏

[ciye in reply to RazB]

Rubbish, I have gained 3 stone since july on hu. Took it for 18 months with similar weight gain. 14 months on peg list most of that, though that was down to not being able to tolerate food and constant diahorea. Org didn't reduce my platelets at all. I found a study report saying 52% of patients gained weight on hu.Many of the things we find we suffer from Drs say not to do with mpn or treatment we know better

[Exeter21]

I am on Peg Interferon after Hydroxy. Much better on Interferon . Had hair loss & gastric problems on H U. Interferon is dose related & slow acting & very important your provider understands that. I was to be started on 90 a week by a Dr who had no idea on the drug 🙈. Fortunately I had read this website & 45 is starting dose so I had to argue this with DR.

Fortunately I contacted MPN & now have amazing treatment . Monthly only injections currently to get body used to it as weekly gave me bad migraines. It is very good however costs a lot of money. Hence Hydroxy cheaper & acts well on many . But I prefer this injection 👍

[Jennytheb]

Hi,

I am on 1500 Hydroxy daily and keep my weight steady and am happy to stay on. I couldn't advise therefore on any change. I hope you get sorted. Jenny

[Meatloaf9]

It seems that many on this forum have had problems with HU. I have been on HU for approaching 2 years and have had no problems whatsoever that I know of. I take it for PV and according to my MPN specialist all of my blood counts are "perfect", maybe when I see him next week they won't be so good, who knows. He recommended that I stay on HU when I last saw him. I questioned about a switch to interferon at that appointment.

We are all truly different in how we respond to medications and in the course of our disease. No one size fits all. I guess we just have to learn as much as possible about our disease, see a good MPN doc, preferably a MPN specialist if we have access to one, and then make the best decision we can in consultation with your Doc.

Best to you always, good luck on your decision.

[Hidden]

Lots of interesting and helpful replies. That 52% problematic reaction was novel . Generally, I hear more positives about the injections than bad, so I'll take the challenge. I'll keep you in the loop re how it goes. Many thanks to all for your input. Cheers!

[Minify]

Hi 222Bobby,

I was on HU 500/day for 6 months, tolerated it fine, and it brought all my counts into “perfect range”. However, I decided to switch to Pegasys due to skin cancer. Just took my first shot 45mcg and had no side effects. Since I’m starting from normal counts, my heme recommends 45 mcg every other week, monitor with blood work every 2 weeks; then adjust as needed. It’s expensive! Bought the 180 mcg vial which I have divided into 4 doses. I’m hopeful I can keep the counts normal with low dose.

Did not experience weight gain on HU, but I Peloton and exercise regularly, and I think that has helped.

71 yo, ET Jak2

[Hidden in reply to Minify]

I very much appreciate your contact and the detail, Minify. I think it's the same price in Aus as the Hydrea (AU 7/scrip). Gee, the monitoring/blood tests seem challenging. ...once every 3 months Vs every 2 weeks, but I suppose that settles. Interesting exercise you mentioned..is it like Pilates?