I read that hydroxycarbamide treatment is likely to produce a weight gain. Even though I am now on the smallest dose (500mg/day), dealing with a bloated tummy is so difficult. I should add that I have ET and have been on treatment now for close to 3 years. I exercise religiously but feel so frustrated at time that nothing gives. My haemo is not sympathetic and I guess all the treatment drugs would have the same effect.
Although my gain is not too bad (3 kg) I would love to learn of any special diets. Currently doing low fodmap, as I also have IBS. From what I've read, chemo belly doesn't go away!!
If HU is causing bloating then a lower dose would be the only way I know of to resolve the adverse effect while staying on HU. It is not true that 500mg is the lowest dose. In the brand names, it does come in lower doses.
As you can see, the lower dosing using Droxia would be cost equivalent. Siklos at 100mg would be much more expensive. If you desire to try a lower dose, there is no reason not to pursue it. It will not be as effective at reducing PLT at the lower dose, however. Some on generic HU 500mg also stop taking it daily. They can drop back to every other day or other alternatives schedules. When I dropped back to every other day it did not make any difference. I simply could not tolerate HU at any dose.
You do have other cytoreduction options if you find HU not to be suitable. Pegasys is another good choice many benefit from and tolerate better. That is what happened for me. You would also have the option to consider anagrelide.
We are all different in how we respond to the meds used to treat MPNs. We each need an individualized treatment plan managed by a MPN-expert hematologist.
As always, Hunter, you have opened the door of opportunity. Your advice has been most helpful. Thankfully, we have subsidised medication for pensioners here. I will put forward a suggestion of lowering the dosage, as my doctor isn't keen on changing the med.
I had same problem ,I am 72 and bloated all the time I changed to a Mediterranean diet result being in 3 mth I was down 11 lbs and no bloating it worked for me but we are all different I walk 5-7 miles in the course of a day instead of actually exercising hope this helps I am on 500 gms a day of hydroxycarbamide
That's a nice result, Chillyash. Unfortunately I need to start with a FODMAP plan. My daily walk would only be a fraction of what you manage. Well done!
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