I'm currently on Hydroxycarbamide 500/day and platelets are controlled. Looking at switching to a control drug that will ease tummy bloating. Hydroxy must be the safest/least problematic drug but it has given me bloating as a side effect. The FODMAP diet I'm on doesn't help that much, though it's still early days.
I'm considering asking my specialist for an alternative drug...maybe peg interferon (tummy injection ). Should I go down this path or live with the ugly bloat? Even though I'm now 71, I still care for my appearance and do all the right things for that, but the current drug makes it so hard and stressful.
Hi there, I am also on this treatment and I agree with Cat. It is your choice but if its working well as it is for me then stay with it. Who knows what a different drug would bring up in side effects?
Hydroxy is not the safest/least problematic treatment option for ET. It is one of the treatment options that has its own risk/benefit profile. It is, however, the cheapest treatment option that has been in widespread use for ET for quite some time. You correctly identify that Pegasys is another viable treatment option for ET. Pegasys has its own risk/benefit profile. It is considerably more expensive and some hematologists are less experienced with it.
We all react differently to each of these treatment options. Some tolerate hydroxy and benefit from it, but not everyone can. I am one of those who cannot tolerate hydroxy and it was ineffective. I have done much better on the interferons. Pegasys was easier to tolerate and much more effective at a low dose.
It is up to you to determine what is or is not an acceptable adverse effect from any medication. There is more than one option to treat ET, but sometimes patients do have to advocate to access more expensive medications. It helps to consult with a MPN Specialist rather than a regular hematologist.
I am on 500g hydroxycarbamide and suffered the awful bloating,18 months in and I switched to a Mediterranean diet and walking everyday 4 miles Not all in one go result is I am 10 lbs lighter no bloating I am 72 hope this helps
I have been on hydroxy for 13 years now. Yes I do have similar side effects but compared with what could happen with very high platelets I stick with it. Another treatment might have even more side effects.
I take hydroxycarbamide and Omeprazole which is to reduce heart burn/gas.But recently stopped Omeprazole to see if stomach gas returns, feels like a pill for no reason.
But perhaps will continue it as normal, don't want to suffer bloating.
I have been on HU for about 2 years for PV. I occasionally have bloating, abdominal pain, and diarrhea. The question is how do you know if those symptoms are due to the HU or some other condition. Eliminating all the other possible causes can be a long involved process, I am finding out. Just because a symptom is listed as a possible side effect of a drug does not automatically mean that it is the cause in any individual person. HU is working very well for me in controlling all of my blood counts so stopping it to find out if it is causing my problems does not seem like a good option to me. Best to you in solving the problem you are having.
I tried peg for a year but found the side effects too much to cope with, platelets went up and never came down. I have been back on hydroxy for a year. Gained 3 stone on hydroxy lost it on peg, regained that and more....
Thanks so much everyone. I feel much better about making a decision to stay with the hydroxy. Seems like my current exercise and diet tweeking will be the better option.
Hi Bobby, we are both going through the same thing, however I have found a solution for myself. Every morning I take 2 capsules of Psyllium and 1 cap of ClearLax. This was recommended by my GI doctor. It is working! I eat smaller meals more frequently and no fatty food. I hope it works for you. It does not hurt to try.
Big fan of psyillum too and a GI specialist recently put me on Merberverine - both are taken first thing in the morning and about 30 mins before food. I agree that smaller meals help. I suspect ? my issue could be with carbs (which are stored with water). I'd be happy to try low carb -fodmap foods.
you are on a very low dose. I personally wouldn’t want to upset the apple cart. You could suffer worse side affects with an alternative x
Hi Everyone,
My consult with the dietician last week was OK. I'm now on day 7 of strict low Fodmap meals and sticking to 900-1000 cals/lday. If there is no improvement in 2 weeks then she will look at an alternative course of action. I do feel less bloated and I'm not concerned with the restrictions.
I'd dearly love to know how hydroxy (I have ET) interferes with metabolism/body composition.
Seeing my haemo tomorrow, but he's not too interested in helping with a way to lose these
extra kilos I'm 'nurturing' 🥺, just as long as the platelets are behaving.
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