I've been on Hydrea for 15 mths now (I have ET) and am concerned with a 3.5kg weight gain in that time. No amount of restrictive eating seems to help, which is frustrating. From my research, the average weight gain on this drug is about the same. I'm not looking forward to continuous food restriction, especially that I will be on this drug for the rest of my life. Apart from the weighty issue, all is well and platelets are well and truly back to normal.
Next week, I will ask my haematologist for an alternative drug that doesn't have this side effect. I'm hoping he won't scoff at this concern.
Does anyone have a similar predicament and /or was successful with an alternative medication?
Finally, has anyone been told why Hydrea causes a weight gain? Does it slow metabolism or cause water retention?
I've recently switched from HU to Besremi interferon. I gained ~1-2 lbs on HU after 15 months, not a big deal but I'm skinny to start and prefer not to go over 130lbs. Also this weight goes to the wrong places. It seems the extra weight may be going away on the INF.
I see your earlier post re constipation, I had that too with occasional swings the other way. This is typical on HU.
INF has other potential advantages as discussed in many posts here, (possible reduction in mutations among them) so you may want to discuss with your Dr. But not everyone tolerates it, as also with HU.
222Bobby, HU tends to cause magnesium loss. It's needed to activate thiamine and vitamin D. Together they are needed for ATP and more. A deficiency of activated thiamine and vitamin D can lead to constipation and other gut issues.
Thanks for your comment, Pte82 . I take a magnesium supplement...along with calcium and Vit D. Psyillum is great for regularity. Other than that, I have no idea what is bothering my gut and causing this weight gain.😀
I’ve been on HU for many years and I’ve never experienced weight gain. In fact, the last year and a half I have lost about 15 pounds. I am also thin to begin with so I’m not happy. The only medication that caused weight gain for me was Jakafi. Are you taking any other medication‘s for any other ailments? If so, you should sit down with your doctor and determine which one is causing you to gain weight. All the best,
Thanks for your interest and comment Cindy. I believe some of us lose weight and some gain ...goodness knows why?? I do take a low dose (50mg) of propranolol hydrochloride for my hypnic headaches. When I asked my local doctor about this, he didn't believe the latter was a problem for weight gain. I'm not convinced, but I would prefer not to suffer with the nightly headaches.
I’m sorry about your headaches. This illness really affects everyone in different ways. When I was diagnosed originally with ET, I had gone to my gp because of unrelenting headaches for months. He did blood tests and found I had high platelets. He referred me to a hematologist who confirmed ET jak 2, started me on hydroxyurea, and my headaches were away shortly after.
Hello 222BobbyWas on Hydroxy short term- but had bad reaction - some time ago now-Haemo put me on Anagrelide and for last 2 yrs or so- everything is good-I watch my weight -dont have too much in carbs/choc/cake etc etc.Just occasional treat. Walk a lot.
Have other health problems.
You should be able to have an alternative drug-Good Luck
Thanks for that Ratton726. I'll post back after next Wednesday when I see my haemo. I'm leaning more to looking at an alternative to the propranolol first. My weight started to climb the month after commencing the propranolol. I'm glad I have records to pinpoint these medicine events and symptoms. Happy that you're doing OK with the alternative drug.
I have been on hydroxycarbamide since June 2021 so not long I was convinced it put a lot of weight on me and my stomach was very bloated ,but with probiotic yogurt and slimming world I have no bloating and have lost half a stone sure it's slow coming off but it is coming off and I walk most days between 4-5 miles
All I do to help myself maintain the weight is totally changed my eating habit. Have been doing it almost 3 years and quite well maintain. To me I believe eating healthy, cut down sodium and minimum sugar etc been doing fine.
Hi Bobby, 3 kg, precisely what I have gained after a year of HU. I am also on 75 mg aspirin, take Vit D and turmeric tablets, plus drink a lot of water . I exercise a fair amount (run plus other body strength work) and believe the HU is also clobbering my running (don't want to give it up, though, as I feel it is the one barrier against even more weight gain). My plan is to try Pegasys and have agreed with the haem to start in the autumn . My plasma magnesium level is in the normal range. I have no doubts that HU is the reason for the weight gain in my case, probably compounded by some more "liberal" eating during the festivities. Does HU interfere with our metabolism? Is it an issue of water retention? I don't know, but it clearly affects our intestines (bacterial flora I imagine, which I try to counteract with probiotics). Does this impact the way we absorb food? I have not tried to diet properly yet , I like the way I eat (healthily) and I don't think I would last long on a strict regime. So for now I am considering it a temporary problem, hoping that the future switch to Pegasys is the solution (fingers crossed!). Regarding the impact on running, this is interesting as my heart rate is in the norm, (I have been wearing a heart monitor when running for many years), but it is a sense of tiredness that sometimes hits me hard plus my muscles are much more sore than I would expect. I suspect HU affects tissue recovery.
Hi, interesting about your sore muscles of which I am also experiencing. As a life long cyclist and keen walker my muscles are now constantly sore almost as if they are intolerant to exercise. I also experience the fatigue but just plough on through it until it passes. I have been on HU for 2 years, no weight gain but lots of joint and muscle pain and just wonder if it's time for a change. What a minefield!
Hi I m 68 and have been on HU for over 13years. I m heavier now than I used to be - about 9.5 stone as opposed to 8.75 - but to be honest I’m provably eating more in the way of carbs than I used to - not a massive amount but enough to slowly gain the weight over a couple of years. I ve tried to lose a few pounds but I virtually have to starve at 500 cals a day to see any benefit and I m not prepared to do that, makes me very nauseous! HU works well apart from skin problems which again I tolerate. I walk the dog for an hour or two every day uphill ( we live in Cumbria) so def not a couch potato. Old age and dry rot so they say! I think I ve got to the stage where if I feel well - what the heck. I ve just moved into size 12 jeans ( I blame M and S - they re making them smaller! 😂😂) but I m a cup 36 E and getting bigger. Hate it!! They should shrivel up and drop off when you hit 50 😂😂
Your reply post was so amusing - really made me chuckle and yes I agree when you hit 50 - it is such an effort to lose even a pound and maybe more important to enjoy life and be happy 😄🍷while looking after our mental well-being which everyone seems keen to focus on after lockdowns!
An interesting question regarding why HU can cause weight gain but not everyone experiences it. HU is an antimetabolite (cytotoxin) that interferes with DNA activity in cells that have active DNA activity like hemopoietic stem cells. It can also affect the intestinal endothelium and may alter your intestinal microbiome. I really do not know that this is the reason for weight gain though.
There are other options to treat ET. HU and PEGylated Interferons (Pegasys or Besremi) are the two first line treatment options for ET. Anagrelide and Jakafi (ruxolitinib) are considered second line options,
Hope you find a treatment option that suits you soon.
Many thanks to you all for your interest and contributions. Hunter5582...I learned much from the articles you offered. Thank you.I'm feeling more confident that I shall overcome my 'weighty' issue and hopefully not need to change my ET drug.
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