I've been on Hydroxy for just over 3 years and am on a small dose of 500mg/day. Platelets are normal but my big complaint is weight gain. I'm currently on the Alternate day or Up day/Down day plan to see if I can lose any weight. After 2 weeks I'm surprised to see a few kilos go 'into hiding'.
I could continue with a modified version of this diet and stay with the hydroxy or ask my haemo to change meds to Peg. He is not keen about the latter, but I could push my case. I fear the vanity kilos won't wash too well with him.
I have no idea if the Peg would help control this belly bloat, so it's a risk, along with more frequent blood tests and consults. I suppose I'm asking if it's worth the meds change. Love to hear from those who made the changeover. Incidentally, I'm almost 72, but still figure/weight conscious.
Have a nice day 😀
Anna
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Goosebumps52
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Weight gain has been reported by some on the forum. There is evidence for this in the literature; however, note that weight loss is also reported. We are different in how we respond.
Bloating is different than weight gain. This is a gastrointestinal issue. GI issues are a common hydroxycarbamide adverse effect.
Hydroxycarbamide and Pegasys are both well recognized preferred or first-line treatments for ET. In the absence of clear medical contraindications, it should be up to the patient to decide which option to choose. Dr. Harrison did a great job explaining how to make this decision, mpnjournal.org/how-i-treat-...
There are a variety of reasons that doctor may be reluctant to allow access to Pegasys. Many doctors are not experienced managing patients on PEG or had negative experience with the older forms if interferon. PEG is considerably more expensive. The cost of PEG = $4,200/month, HU = $25/month. Your individual medical profile also needs to be considered regarding medical contraindications.
It is your prerogative to advocate for PEG over HU is that is your treatment preference. It is your treatment goals and risk tolerance that is at the core of deciding which treatment option to use for the MPN. Keeping you weight at a healthy level is a reasonable goal to set for your treatment as weight is not just vanity. It is up to you to decide how you wish to approach weight management as a health issue.
hi what makes you think it’s hydroxi? I know fatigue has an impact on my weight. I’ve been a sucker for sweet stuffs and have been on a diet the whole of my life. Only to be just outside and indeed sometimes in the obese and prediabetic range. When suffering from lack of energy even to make a sandwich It's so much easier I find to hit the sugary high carbs. I swapped to Peg and it’s done wonders for me. Desperation push my decision but some people can’t tolerate it. You are on a very low dose of hu. I really can’t advise you.
Treatment is all about quality of health & life. Speak to your Dr as Interferon certainly has not given me weight gain . The Hydroxy made my hair weak & fall out & my gastric system wouldn’t tolerate it.
If you are constantly diet watching that is not good . I don’t eat carbs sugars or dairy & just chicken or fish . Weight stays same . I do walk lots & rare glass of red wine . Hair quality returned to normal on interferon. Can you not find an MPN to contact for assistance re drug . Good luck Julia uk.
Hello Anna. I can sympathise with the weight gain, because I am one of the unfortunate ones that has gained quite a few pounds with hydroxycarmide 500mg daily for the last few years. I don't eat sweets, high protein diet etc, nothing worked. This afternoon I go to the hospital for my very first injection of peg. There are other reasons for the swap, migraine, sweats etc, but I will keep you updated with my journey. I had so much positive response from the wonderful people on here, that I decided to make the change.Jan
Thanks for your comments, which gives me more to think about. I am a little more hesitant about switching to Peg. Just a few more days until I see my haemo and put the proposition to him. I'll let you know how that goes.
By the way, the alternate day diet (500 cal limit every other day) has helped with a 2-3 kg loss over 3 weeks, but the chemo belly is still there!!
My weight gain on Hydroxy is frightening I did lose weight on peg, but my platelets barely budged. After a year on peg I couldn't cope with the side effects. I have been back on Hydroxy 18 months and regained the weight I lost and more....
I’m with you Goosebumps… I’ve had a big weight gain…in just over 9 mths I’ve gained 7kgs and it’s definitely not my diet… so please don’t suggest that….and I’ve streamlined that even further since I saw my weight creeping up. And it’s not couch potato syndrome either….I exercise.. I’ve also joined a gym. Before I always get almost 10k steps in a day.
My haematologist is in denial about it but thank heavens my GP who has been weighing me and acknowledges the weigh gain since starting HU . I also feel bloated.. and very occ some days I do skip the HU cause I just feel like crap I and there’s no bloating feeling .
I also have extremely dry skin now… with red dots..mouth sores and in last 6 mths a kidney stone.. I’ve had and. US one Aug 2023 2nd Feb 2024… I drink plenty water too.. litres.. so ???
Only thing I’ve changed in last year is adding in HU.
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Is peg interferon always slow to reduce platelet count? 
Aches and pains 
