Belly be gone

[Goosebumps52]

Hello fellow ET ers,

I've been on hydroxy for 3 years now and platelets are happy (currently on 500mg daily). Alas, I have a huge problem with belly bloat, which is also spreading south to my thighs. This is my only concern with the medication, albeit cosmetic.

I have always worked hard to stay within a certain weight range, so having no control of this is annoying to say the least. No matter how hard I try, I cannot control weight gain. When I started treatment I was 54 kg and today I'm 60 kg! My belly and upper thighs are is permanently puffy (water weight I suspect). I should add that I brisk-walk 40 mins each day and follow the Monash Uni FODMAP plan.

I see my specialist every 3 months, but he is not sympathetic to my 'vanity' concern and changing drugs. I think that he is more concerned with the platelet numbers and not the scales. Unfortunately there is only one haemo in town.

Am I forced to accept this awful belly and shut up. Do all platelet reducing drugs have the same outcome?

I'd love to hear your thoughts about this. Happy New Year to all ET readers 🙂

[hunter5582]

Sorry to hear about the struggles with HU adverse effects. I would suggest that this sort of bloating and weight gain is more than just vanity. It is a significant health concern. There most certainly are other options for cytoreduction. Another commonly used option is Pegasys. A second-line option is anagrelide.

If you are having problems with the local hematologist, you may need to travel to seek help from another hematologist. Unfortunately, many doctors have little experience with MPNs. Consulting with a MPN Specialist is very important to ensure optimal care. You may want to take a look at this list to see if you can arrange for another opinion. mpnforum.com/list-hem./

You may also want to r4each out to the Australia-based MPN Mate. Perhaps they can be of assistance. mpn-mate.com/

Wishing you all the best.

[sydunipete]

I’m also Australian and I’ve been on HU for 10 years.

Recently I’ve read some research that suggests the Mediterranean diet has measurable benefits for MPN patients. It’s easy to stick too and I’ve lost 4kg in 3 months without really trying. Daily exercise also helps.

The Australian MPN Alliance website has some great resources for diet.

[Janis12]

Hi, I have been on hydroxy for 3 years (currently transitioning to pegasys) and have actually lost weight in this time which I could ill afford and no matter how I try I cannot put the weight back on. I eat a fairly healthy diet but lots of it and I exercise daily but this has been my routine since being a teenager and I am now 65 years old. It is easy to blame any new symptoms on our blood condition or drugs when in fact other health issues should be considered. With the symptoms you describe I would be going to see my GP, haematologists deal with blood conditions, a GP will consider a variety of options. Good luck.

[Goosebumps52 in reply to Janis12]

Hi Janis,

That's exactly where I'm going today. Will let you know....

[souplover]

Hello,

When you say belly bloat, do you mean weight gain OVER your stomach? Or literally, internal belly bloat?

I've been on Hydroxyurea for about four years. For a while, I felt no side effects. But then at some point, I began to develop a number of intestinal issues, including belly bloat. I'm pretty slim, but my belly sticks out horribly. And I also developed a lactose intolerance and other intestinal issues. I ascribe all this to the Hydrea.

My hematologist has been good, but she doesn't seem to be very familiar with the side effects. I'm planning to find a specialist in NYC at least for a consultation. to consider switching meds.

[Goosebumps52 in reply to souplover]

Yes definitely belly bloat as I'm a avid weight watcher. I would love to switch meds, but have been told that this hydroxy is the least problematic. If I could just get the OK for a diuretic.

[souplover]

My hematologist also told me, the other medications are worse (side effects). But that's not what I'm hearing from others on this list. Which is why I'm at least going to speak with an MPN specialist to learn more.

I doubt that a duretic will do it, but keep us posted.

[dogsandhorses]

I've been on HU for 5 years, and have the opposite problem. I've lost 30 pounds due to the gastrointestinal issues HU has caused me.