I read that some of us on hydroxycarbamide, who are also JAK2 positive (self included), have experienced a weight gain of around 3 - 6 kg...or more. This has been the case for me (about a 4 kg gain) and has occurred over my first 2 years on this drug.
So far, no amount of food restriction or special diet /food combination has any effect on controlling this galloping increase.
I should be grateful that a control medication for my ET has been discovered and is working at keeping my platelets down, instead I continue to feel this sense of loss of control re my weight. I have been slim and watched weight for most of my adult life, so you can imagine this weight gain has been a hard pill to swallow.
My haemo won't even explain the reason for the gains - a slowing metabolism, water weight?? Can anyone share what they have learned regarding this?
Last month I learned via a colonoscopy that I have developed a recumbent colon. This is very obvious now in my permanently bloated belly. Unfortunately, there's not much one can do about it. When I asked my haemo about the connection between a redundant colon and the hydroxy, he dismissed it. I find it hard to believe this ballooned belly came out of the blue. I'm pretty sure this is where my gained 4kg is sitting.
Would love to chat with anyone who can share this journey with me.
Oh how I sympathise! Also ET JAK2 on Hydroxy, I too developed a bloated belly in spite of actually losing weight because of horrible metallic taste in mouth. 14 months later still not gained the weight, and skin very dry, but the bloating (and constipation in spite of loads of water, fruit/veg and no sugar diet) is permanent. Seemingly we have to accept it.
I wish you success in shedding some of the extra weight, and hope you can find a way to concentrate on all the positives in your life. I try to keep as active as possible and keep my mind focused on the positives. Hope you find a way that helps you. Best of luck
I appreciate very much your response and support. I am slowly beginning to accept my situation and grateful for all the support and empathy this site affords. Yes there are many positives in my life and I look forward to enjoying them . All the best with your tummy. I've learned that disguise is the secret.
I had same problems bloated tummy weight gain dry skin sorted it all with bloating avocado active yogurt skin Argan oil moisturing cream and I do between 8000 -10000k steps throughout the day everyday no further problems I had bloated tummy for about 14 months it was big it’s only very occasionally now I don’t think I have a colon problem never thought about it cos bloating only started when I went on hydroxycarbamide I am 71
Thanks ChillyAsh. I brisk walk for 30 mins each day and love yoghurt. Perhaps I need to have some avo with it, as there is no product here called "Avocado active".
I have never seen an explanation why hydroxy can cause weight gain, only that for some people it does. It is known that HU can have significant GI issues, including constipation. My understanding that this is due to compromise of the intestinal endothelium. There is also some thinking that hydroxy may impact the intestinal microbiome since it has antibiotic effects. Whether this is part of the issue is perhaps possible but just a theory at this point.
It can be difficult to sort out what is the MPN, what is the hydroxy, what is the redundant colon, and what is some combination of these issues. It seems reasonable to have concerns about the gastrointestinal impact of hydroxy in the presence of a redundant colon. At a minimum, both can cause constipation. If you are concerned about the impact that hydroxy is having, then it would be reasonable to discuss other treatment options with your care team.
I do not recall whether you are seeing a MPN Specialist or a regular hematologist. I would suggest getting a consult with a MPN Specialist if you are not already seeing one. You have enough complexity in your case that this input would be helpful. Perhaps another gastroenterology consult would be in order as well. Preferably a GI doc that has familiarity with medication like hydroxy. Just in case you have not seen it, here is a list of MPN expert docs. It is worth doing whatever it takes to consult a MPN Specialist. mpnforum.com/list-hem./
Many thanks Hunter for your excellent advice and direction. You never fail to guide and helpand I do appreciate the time and effort given to myself and others on and the site.
I'm in regional Australia and we are fortunate to have just the one haematoligist, which I visit every 3 months. I believe he is also the MPN specialist. I have given some thought to seeing a gastroenterologist, so will follow up on that. As for the constipation, I have overcome that now with 2 smallish doses of psyillum/day. It gets my thumbs up every time.
I also take a daily probiotic to help restore the gut microbiome, though I cannot see much improvement.
Thank you for your kind words. We all get a lot of support here on the forum. It has been a true blessing in my health journey.
I would definitely follow-up with a gastroenterologist. You have a complex case presentation. It is very important not only to see the various specialists but to ensure that they collaborate as a care team. Not to forget, you are the Team Captain who ensures that all parties work together and makes all the decisions.
I also take a daily probiotic. My strategy is to use the higher end probiotics and to change which one I take each month. This is to ensure the maximum diversity in gut microbiome. I cannot prove that it makes a difference but is seems sensible.
I too have same problem with hydroxy. Over 18 months its just gradually kept increasing with no change to lifestyle and eating habits before i started hydroxy. If someone has the magic answer am sure lots of us would love to know it. !
Hi. I also initially gained a bit of weight when I started HY. I was diagnosed with ET and JAK2. I've managed to lose a bit but would like to lose some more. I cut down on bread - yeast doesn't like me very much and cut out sugar. I also exercise more - stationary cycle and walk more. Losing weight is never easy but I do feel better for it. Hope you are managing your ET and JAK2 -
I definitely have gained weight after starting Hydroxy. I had had a gastric bypass and lost 5 stone. I was finally down to a size 12 and was over the moon. I had lost all interest in food, in fact if I didn’t need it to survive I wouldn’t care if I never ate again. When I was diagnosed my consultant actually apologised and told me I would gain weight. I could have cried. My GP also put me on Pregablin, a drug notorious for weight gain but I was in so much pain with my joints I just had to have it. I have the bloated belly as well. My spleen and liver are enormous and uncomfortable. My bones have thinned so much I have now been diagnosed with osteoporosis and have to use a Walker around my home or an electric wheelchair when I venture into our complex. Hydroxy has a lot to answer for but it’s kept me alive and for that I am grateful.
hi having permanently always been on a ‘diet’ all my life can’t really contribute my weight gain to Hydroxicarbomide. However fatigue and energy loss due to ET without decreasing my calorie intake is most probably the reason for my weight gain. As for your colon I’m afraid I have no answers but hope someone else has.
Thank you all for your support and comments. If I could respond to you individually....
Stripecat - I hear you and yes it's a struggle. I cannot imagine what it would be like to give up.
All the best to you.
Oscarboy - True the increase is gradual and I just hope there is a peak. I have not found an answer either.
summerdown - I'm with you cutting out the bad carbs (bread and sugar). I'm also considering removing dairy (except for my Chobani Greek yoghurt )
jilltdabrat - I can imagine how elated you felt after scoring a size 12...only to be disappointed with the hydroxy effect. Still, like you, I value its contribution top prolonging life expectancy.
So many meds cause weight gain.
Wyebird - nice to 'shake hands' with another lifetime dieter. I too am tired on the hydroxy...especially between 10am and 2 pm, despite sleeping 8 hours every night.
Just adding that I'm basically vegetarian . I used to fall into the lacto-ovo category, but have been tiring of eggs and most dairy products. I follow FODMAP and make sure I get lots of soluble and insoluble fibre foods. I also take 1 tsp pysillum in water 2-3 times a day.
In March 2019 I was prescribed hydroxy and very quickly gain 2 st, had severe bloating. Switched to interferon after a year. The side effects of interferon were to o much and after a year I stopped, it didn't reduce my platelets by more than 50 but I lost the bloat and the weight. Within a month of being back in hydroxy the bloat was back and after 6 months the weight also. Heamo dismissed hydroxy as cause I don't...
Hydroxyurea and Water retention - a phase IV clinical study of FDA dataSummary:
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Thanks for this interesting info, ciye. Interferon is a something I'd like to try, but the haemo doesn't go along with it. ...reckons I'd have too many adverse side effects. Surely they couldn't be worse than carrying a watermelon in my tummy.
In my case the side effects were much worse, I had no sense of taste, heightened sense of smell, severe anxiety, horrible chest palpitations and at the higher doses does several times a day. I persevered for over a year but had to realise the interferon wasn't for me my platelet count barely moved. Your doctor should not ignore your request for interferon as long term it is better than Hydroxy. Most people get on fine with it (I wish I had been one of them). If you don't get on with it you can go back on hydroxy. I am hoping bomedemstat will be available sometime this year professor Harrison was hopeful it would be, she also said the were other medications due out as well.
I only wish we had a 2nd haemo close to where I am. He gave reasons for not switching - lots of them, but I cannot specifically remember them. From his negative tone, I 'read' that he did not want to entertain this swap. I will perservere at my next visit in 2 months time. So far no amount of food restriction will resolve the problem of my permanently bloated tummy. I really hate looking at myself in the mirror....and don't anymore. I'm 3-4 kg over my pre-meds weight.
It is your prerogative to push to make the change to PEG if the adverse effects and intrinsic risks of HU are not acceptable to you. The issue here is about informed consent. If you understand the risks of the switch the PEG and feel the benefits outweigh the risks, then it is your right to seek the treatment of your choice. It is also your right to seek a second opinion. While this might be a challenge due to geography, it could well be worth the effort. Perhaps this could be done though telemedicine.
I believe that you were also seeking input from gastroenterology. Reviewing the GI effects of HU and your other treatment options with this specialist is also critical. It would be informative to get this input.
There is no way to know whether you will do better on PEG than HU. It may be be better or may be worse. You already know how you are reacting to HU. The most basic question is whether you wish to continue on this course of treatment or will you change it. Ultimately, this decision is yours to make.
Looking at the queries & recent posts, I consider myself lucky that I am relatively stable on minimum Hydroxy dose-500mg daily, double at weekends. However, like most of you, I have got a few things going on - bowel habits have changed-I don't feel my system digests food properly & have leaky bowel- which I cannot discuss with anyone as I am too embarrassed. I take Lanzoprazole which helps slightly. also I have pain in hips, groin, back which I know is arthritis, but think the Hydroxy may increase the pain, having read other posts.Guess we can only do our best! I am waiting to see orthopaedic surgeon re hip...
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