I'm on a hydroxycarbamide regime for ET (now some 9 months since starting on this) For the first 2-3 months I was losing weight, but since then I have gained weight despite dieting. My platelet count is now normal, and the dose reduced to 500mg/day. I mentioned the weight gain it to the specialist last week and he said it was common and nothing to worry about. Unfortunately, I do have an issue with weight gain and it's more frustrating that there's nothing I can do about it. I also have constipation, though this has eased with psyllium husk and stool softeners.
Has anyone been given an explanation for weight gain from hydra even when dieting? I'm 69, and like to keep fit and healthy, so a 3 kg weight gain is stressing me. Does weight ever stabilize or better still, reduce?
I am not sure whether the weight gain will stabilize/get better. The constipation will not get better based on my experience. HU can compromise your intestinal endothelium, which is what causes the constipation. HU also has anti-bacterial properties. There is some thought that it could disrupt your microbiome, though I have not seen that proven definitively.
You might consider adding a probiotic supplement if you have not already done so. The microbiome has a significant impact on many aspect of our bodily function.
If it turns out that you simply cannot tolerate HU, then there are other options. I was unable to tolerate it. I am doing much better on Pegasys. Note that we are all different in how out MPNs present and in how we respond to meds.
Thank you for that explanation I, too, have ET JAK+ diagnosed 4 years ago and on Hydrea since and have had bouts of constipation; I will try the probiotic. Also, been on a 1200 calorie food plan for 2 months and lost only 1 pound:/ Ugh! Very frustrating!
I too put weight on with hu and more with Anagrelide. I also had a problem with my weight before. I try very hard with dieting but not losing anything.
222Bobby,You are not alone:/ I am 62 with ET JAK+ for 4 years in Hydrea and have gained and tried to lose weight to no avail. I am frustrated; been on a 1200 calorie food plan and lost only 1 pound in 2 months:/ Ugh:/
Thanks for your comments mbr8076 and lizzieup. I wish someone would explain why this is happening to us. My specialist stated it's not unusual, but offered no further elaboration.For me, dieting is not as simplistic as calories in Vs calories out any more. Is the medication interfering with metabolism? In my case the weight is in my belly and I'm assuming it's water weight.
I'm looking into the Microbiome diet once I have the results of a few GI tests and an ultrasound. I'll let you know what emerges from that.
Hi Bobby, I am in the same boat I'm afraid I was on a 1200 calorie diet for two months and lost less than a 1lb. It has made me miserable, with all the other side effects exhaustion, mouth ulcers, palpitations, silent migraine, dizziness and itching, I have called it a day.
I now walk briskly for 45 minutes a day and eat really healthily. I'm hoping that the hydroxy hasn't caused hypothyroidism.
I am not advocating that anyone else stops taking it, I just wanted my life back.
Hi Mardigras and MD155,It's reassuring that we're all in the same boat. There must be some way to overcome this issue. I'd hate to think how much one would gain without food restriction and serious exercising. I also thought my metabolism had slowed because of an underactive thyroid but a breath test at the dieticians showed a BMR of 1430 and I'm eating less than than each day. Go figure?
I am in the same place and can’t figure it out. I do Triathlons and extremely active but no matter how much I exercise and diet I can’t get my weight down. There has to be some reason for this.
Yes - weight gain ha definitely been one of the side effects of HU for me as well. I probably have gained about 4kg since starting on HU despite upping my daily exercise activity. I am hoping that as I wean off of the HU and complete the switch to Peg that the weight might start to come off...
Just a thought Krotsida, do you mind saying how long you have been taking Hydroxy. Mine was a gradual weight gain over six full years of Hydroxy medication. There appeared to be no end to the weight gain despite what I did by way of exercise and diet. Regards, Marcia
My doctors said ET and the medication has nothing to do with my weight gain. Other doctors are saying it does.I believe it does. I eat healthy, gained weight. Lost 3stone 3 years ago, gained 2 stone over shielding and lockdowns.
Now i have come to the conclusion that my weight will be up and down with ET and MF.
I’ve stopped worrying about it as I would stress more making my platelets go up with stress.
It has took me years to learn not to worry about things but I’m still very body conscious. One day/ one step at a time.
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I, too, have ET JAK+ diagnosed 4 years ago and on Hydrea since and have had bouts of constipation; I will try the probiotic. Also, been on a 1200 calorie food plan for 2 months and lost only 1 pound:/ Ugh! Very frustrating!
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