I've been on hydrea (hydoxycarbamide 500mg) for about 20 mths now. Platelets are normal, so my dose is reduced to 500mg daily. I am still suffering with chronic tummy bloat. For someone who is normally slim, it's annoying to be burdened with a balloon tummy. It has added about 2 kg of weight and no amount of calorie restriction will shift it. I have tried many 'remedies' e.g. a daily prebiotic (inulin powder), a probiotic, a low Fodmap /chemo belly plan and a brisk daily walk for 30 mins.
I'm trying to pluck some courage to bring this up once more with the haematologist (in mid October). From previous conversations about this, he does not think a consult with dietician would be beneficial at all. I wonder if a gastroenterologist referral would be a better option?
At the end of the day, would I be silly to ask for a different medication? I've researched the self- injectable Interferon, but I have no idea if all the platelet-reducing drugs have the same bloating side effect.
I'd appreciate some teasing out of this issue or if you have had success in deflating tummy bloat?
Hi, I have also gained weight with Hydrea. When I discussed this with my haemo., regarding lose a bit of weight she just smile and said "Good Luck". She explained that it is really, really, difficult to do when on this medication. I now think that it is just important to stay a bit fit and not focus on the weight.
It is not at all silly to consider a different medication of you find hydroxy unsuitable due to the side effects. It is your goals and risk tolerance that should drive this decision. Hydroxy and Pegasys are both considered first-line treatment options. If you would prefer to try PEG then that is your prerogative.
Hi, I have the same belly bloating on Hydroxyurea. I've also developed lactose intolerance and difficulty with some other foods too. Apparently the Hydroxyurea changes the microbiome of your intestinal track.
I've been seeing a nutritionist on and off for help with these problems. She recommended avoiding FODMAP foods, but you're already doing that. It helps with gassiness but has not affected belly bloat.
The nutritionist diagnosed (with a breath test) that I am "extremely positive" for SIBO, small intestines bacterial overgrowth . I've now just finished a round of antibiotic to clear that up. I'd say, it has helped, again, with the gassiness but has not affected the belly bloat!
I'm scheduled to go to the gastroenterologist this week, so I'll let you know what she says. I would definitely go to a gastroenterologist and a good nutritionist if I were you - and I'd ask about this SIBO thing. You don't have to see the nutritionist on a regular basis, just a few times.
Please keep me posted on your end too! I've found a lot of helpful advice on this list...
Many thanks for chiming in souplover, hunter5582, Chillyash 34 and Swede . I very much appreciate your support. I find my belly bloating very difficult to accept and naturally stressful. So many of the medicines on the market have side effects, but one needs them to remain in good health. I hope I can come to terms with my lot. Souplover I will chime in and would very much like to know the outcome of your gastroenterologist appt.
I was on HU, now on Besremi (interferon). I'm also slim and in decent looking shape (other than bad MPN symptom days) . I also got a small soft spot on the belly on HU and gained ~2lb. It's not entirely trivial if it adds to the emotional stress of our condition since stress of any sort is no good.
Since switching to Bes the issue has improved some, but still some tending to add. I've made small but permanent diet changes (eat slightly less of the same stuff) and it seems to help.
On a related note, in my early 40's I started to get an obvious belly. I went cold turkey on all snacks and it helped a lot.
Thanks for the thumbs up re interferon. I'll definitely be asking for this alternative. At worst I'll have to stick to a anti-SIBO + FODMAP + Chemo belly food plan and that won't be entirely fun. 🤪
It's certainly a battle, EPguy. I have a feeling my specialist won't want to change the meds, but it won't hurt to ask. Accepting this belly bloating is very much in the "too hard basket". I'm glad you've seen improvement.
Reporting back in, I'm afraid I have nothing helpful to add! The gastroenterologist did not want to prescribe a second round of antibiotics, which she said could kill of the beneficial bacteria, leading to a worse infection.
She did not offer anything else that's particularly helpful. I'd say, she more or less shrugged and said, you may have to live with the discomfort of the belly bloat.
You can do something about the issue if HU is the problem. You can change meds. There are other options. I would also add that when I was having GI issues due to the HU, I started a course of probiotics. It is very important to maintain a healthy microbiome.
Thanks Hunter. I've been on probiotics for some time and more recently added a prebiotic (inulin) . I will ask about a switch to interferon (injections?) next month. One can only try.... not holding out much hope .
There is no reason I am aware of that would preclude a switch to Pegasys. I do believe it is available in Australia. May take a bit of assertive self-advocacy.
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