Since starting hydroxycarbamide (Jan 2021) and like many others, I've gained weight. (My specialist considers this is better than losing weight on this drug).
I've seen a gastroenterologist and recently a dietician . They were unable to offer any concrete plan to get back to my pre-meds weight. I'm hoping someone here has a plan that has worked for them and would like to share.
I'm delighted that my platelets are back to normal, but as the 500mg dose seems to be lifelong and my haemo is not keen on changing meds, I feel only diet and exercise will be of any value (if at all?)
I would appreciate any hints. My latest plan is a keto-FODMAP (low carb) one.
I am sorry to hear of your dilemma. I have been on Hydroxy for 5-1/2 years @ 10 tablets a week and I struggle to lose weight. I, also, have been to a dietician that suggested the Mediterranean diet and although half my plate at most meals are vegetables and only 4 oz of protein with no snacking I cannot seem to drop the weight:/ I cannot offer anything but I certainly can sympathize
I am also trying to lose weight on Hydroxy and finding it really difficult. I was never someone who had to worry about my weight before but now I seem to put on weight so easily. And every pound goes straight to my middle which is concerning. I am losing weight now but it is a real effort and very slow. I don't follow any special diets apart from being pescatarian. I have certainly lowed my carb intake and I have a very small lunch, preferring to have porridge and berries for breakfast and some bran flakes with kefir and a few nuts mid morning. That seems to help support me have a small lunch which might be a boiled egg, veg sticks and homous (without the bread). It's working and I have lost about 7lbs but that has taken about 4 months. Only another 7-8lbs to go and I'll be back at my pre-diagnosis weight. I hope you manage to find a way that works for you - I wish you all the best.
My heamo has said lowering the platelet count is more important than my weight. She's not the one carrying it round, 4 st in the year I have been back on hu. I did lose 3st 7lb on peg but was literally forcing my self to eat. Anagrelide not an option, so the battle to shift the weight continues in vain.
Keto diet is very strict! I think it’s worth eating in a way that is sustainable for long term as we have long term blood disorder and long term meds to manage too. I have been on Hydroxy for many years and weight has definitely crept up although I was told by my specialist consultant (Prof Harrison, UK) that there is no link, but it was many years ago that I spoke to her about it, perhaps there has been new info uncovered since then. Mediterranean diet is well known to be helpful to MPN people. I try hard to “eat the rainbow” which includes carbs…we need them for energy! And I also try hard to keep in the back of my mind that “I’m alive”! Without these meds I don’t know if I would be, so if I’m carrying few extra lbs I can manage it - it’s hard to stay buoyant sometimes, it’s a bit of a daily mantra for me at the moment! Healthy eating (which it sounds as if you are doing), daily exercise and some downtime are all good, healthy things. These are just my thoughts, and of course we are all different but I hope you find a healthy solution that suits you. Xx
Hi. I have the same problem, so totally sympathise. I fast between 8pm and midday. It has stopped the weight gain and is very very slowly helping me lose some. Low carb seems to help the bloated feeling too. Good luck.
I’m on Anagrelide, and EPO injections. I was struggling to lose weight before the EPO injections but since I started them I’ve put more on despite eating less and exercising. I’m transforming to MF which apparently causes weight loss - just the opposite for me 😳
I know fatigue has played a huge game in my weight. You are too tired to exercise and in extreme situations it’s easy to reach for snacks rather than cook.
Don’t you feel miserable when weight just piles on.
I was diagnosed as prediabetic and was put on a programme through the doctor. It helped enormously until we went away for 6 weeks!! Now I’m back to battling the weight again .
Ultimately I don’t think I can blame the drugs for my weight but I know others have.
I too gained weight after starting HU some 19 years ago. It put almost two stone on me in the first few months and I was on 4x500mg a day and I was so frustrated. I went from being ideal weight to overweight despite exercising I couldn’t lose the weight. I found the diet that has helped me is the Mediterranean diet with lower carbs than that- carbs now seem to just put weight on me as does snacking. Lots of fibre and variety in fruits and veg helped but I have to limit fruit because the fruit sugar also affects me. I also do time restricted eating so eating within say 10 hours a day and not for 14 as it appears to help my system, and I also do a calories reduction 5 days a week then at the weekend eat what I like albeit following Mediterranean diet. I find I get bad fatigue if I eat pasta, pastries etc. so have given up and higher protein and veg keeps me sharp. I have lost 1.5 of those stones over time and feel better than ever. Best of luck
I have always been prone to carrying more weight than is healthy.
I have tried all the group and clubs with temporary success. Prior to starting treatment Hydroxy 500 daily, I had lost several stone with a simple calorie deficit method; literally calorie counting and allowance for activity to help the deficit. No restrictions, just sensible choices and substitutes to allow for everyday and celebratory eating. I use an app to record all intake and exercise. The suggested intake is linked to the weight so obviously less suggested allowance as you lose, but sustainable and manageable. Also records food groups and daily recommendations.
Weight gradually regained after an ankle injury and immobility (I was so fortunate to be on the treatment as would have been at much higher risk of thrombotic event had I not been).
Back on the calorie deficit programme now, self regulated, and have lost 19 pounds in 12 weeks. Steady, but hopefully sustainable and still a way to go.
My opinion is that any successful reducing diet is really a version of calorie deficit that has been dressed up. This method has no cost financially, no rules, no guilt and enables me to have control and feel empowered.
Wishing everyone well on whatever method they choose.
I can appreciate everyone's comments here suffering all the same issues. I am on one a day Monday to Friday and two weekends. I always had a steady maintained weight but no more. I too was told there is no link to weight gain, same as hair loss, but I think unfortunately we have all found out differently.
I gained 5 kg straight off when I started Rux. V difficult to shift - strongly suspect there’s a set point change for weight that gets notched up. Maddening. Wasn’t on hydroxy long enough to see if same happened. When you think about it, it’s amazing that most of us stay pretty much the same weight for most of our lives – we don’t do any complicated input output balancing. Hope you find comfort in not being alone. Glad you’ve found this group; lots of helpful knowledgeable people here.
Hi, I have been taking hydroxycarbamide for almost 7 years (2×500mg daily) and have not gained any weight - in fact I have lost a few pounds but that is probably due to trying to keep active. Nothing very strenuous just a daily walk and plenty of dusting! Also, I try to keep sweet stuff to a minimum as my mother and my younger brother have type 2 diabetes. I really do not want any other medical complications! I am an almost 71 year old female.
I got off it & onto Interferon . No weight gain on interferon if you stick with Mediterranean diet. Also hair returned to healthy instead of breaking off on HU . 👍 Julia UK .
My weight has fluctuated in the past, both on Anagrelide and Hydroxycarbamide, but I'm sure the drugs had nothing to do with it as I was comfort eating during some very stressful times. Much later, when I changed my diet for other reasons (low carb, especially no wheat or sugar), weight just dropped off. Ten years after that I became horribly underweight with MF so when I went on Ruxolitinib with its well documented side effect of weight gain, it was miraculous!
Do you happen to have references relating to Ruxolitinib and weight gain? I was on HU first with some weight gain but when I started Rux I started gaining weight consistently every month. My specialists do not believe there is any connection between the treatment meds and weight gain.
I think I read it as a side effect on the leaflet that came with the medication. I'm surprised your consultant isn't aware of that, I thought it was well known.
She said she had not had any patients gain weight on Rux. She seemed astonished that I said I had read studies of people on Rux that had problems with weight gain. I’ve been seeing her for nine months and she has always addressed any concern of mine regarding MPN, MF, or treatment. The issue of weight gain on Rux does not seem to be a topic she wants to explore.
Rux is well known to have a tendancy to increase weight but it doesnt have to happen. and also it is poss to lose weight on Rux, I am on high dose Rux 20+17.5 and just lost 3kg. Rux seems to maybe slow the metabolism so I counteract that with exercise and eating well, avoid sugar and refined carbs etc, I eat three large meals a day and include plenty protein and veg and just enough complex carbs. Im not hungry. Unfortunately the only healthy solution to weight increase is less calories and or more exercise, I wish it wasnt
I never had a weight problem until I started taking Ruxolitinib. This is a side effect of the drug because it affects a hormone called Leptin, which normally tells your brain you are full. You become Leptin resistant and you just eat, eat, eat and gain weight. My Dr. was not concerned in the least. Good luck!!
I gained 8 lbs in a year on HU and could not get it off. I’m now on Peg for 11 months and have lost 7 of the pounds I gained.
Thankyou very much for all your supportive and generous responses. It's comforting to have others 'in the same boat'. Even though I feel less tight in the abdomen after a month of low-carbing (Fodmap-Keto), I've only lost about a kilo .
Dieticians push the Meditteranean as the mantra of diets and I've given it some thought. I wasn't impressed with the advice I got from my recent consults there...essentially tracking which of the FODMAP groups/foods was causing the bloat....very subjective when you have an almost permanent bloat!
Since my specialist won't prescribe diuretics for the water weight in the belly (which is where most of my bloat is/ remains), there's not a lot I can do. At the last consult, my specialist did confess that some people lose weight and others gain on Hydroxy. I have also tried to persuade him to change meds, but he isn't keen at all on that now that my bloods are in a happy place.
At least I find some comfort in the fact that the 3.1 kg average weight gain reported by specialists is the same as mine.
Thanks again everyone. It's a great comfort knowing we share this dilemma.
Hi. Sorry I couldn't work out how to reply to you direct. I just wanted to add that I do also have a meal in the evening, I just try to avoid carbs at lunchtime. I'm afraid I don't measure my food. I have a small bowl of porridge made mostly with water and a little milk. I add about 5/6 frozen strawberries and a handful of blueberries. Depending on the time I have had breakfast I then have about 1/2 handful of bran flakes (in a child's bowl so I don't accidentally have too much), dessert spoon of greek yoghurt, splash of kefir and splash of milk and about 6-10 mixed nuts. If I've had this around lunchtime then I can usually last until a meal in the evening otherwise I will have a small lunch such as a boiled egg, fillet of salmon or some salad and salad beans - basically protein without any carbs. I have a normal tea, but again I try to reduce the carbs -so very small amount of pasta/potatoes/rice etc (and I go for wholegrain where I can). I could be stricter and probably lose weight quicker but I also want to keep healthy. I suppose it is pretty similar to others on here who are following a mediteranean diet. I wish you luck.
I've got same issue. It's rather baffling. My MD doesn't have explanation. I gained 4 lbs/month from a many-year stable 175-180 baseline, until now 220. This was the alarm that got me in to get the MPN/PV diagnosis. With the hydroxy (14 pills per week, 500 mg) I've stabilized red blood cell count, and weight gain has slowed, almost stable now. But can't seem to lose a single pound. Next step is checking for liver growth and/or fatty liver.
I'm careful on diet, don't drink, don't smoke, no caffeine. Work out with trainer 3 days a week. 68 yrs old.
NOTE: Through a post on this site, I found a Stanford professor has patent for CRISPR correction to the Jak-2 mutation. My specialist MD had not heard about this. He said it's interesting because MPN/PV is unusual in that it is a single gene that mutates and potentially this fix could work!
Hi, I have lost weight on hydroxy and I was not very heavy to start with so in many ways I am envious. I would be interested to know how/why hydroxy has the effect of weight gain on most people. Good luck with your weight loss mission.
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