Has anyone on hydroxy been told why it's so difficult to lose any weight restrictive eating?

I'm on 500mg hydroxycarbamide for ET, my platelets are now normal.

[hunter5582]

Weight gain is one of the known adverse effects of HU. You will find multiple references to this in the literature.rxlist.com/hydrea-side-effe...

mayoclinic.org/drugs-supple...

Suggest consulting with a MPN Specialist about potential adverse effects as many docs are not familiar with all of the side effects associated with this medication.

[Gullyfolly in reply to hunter5582]

Like any side effect though, it isn’t guaranteed as it differs by person. I take 750mg HU daily (500/1000 alternating really) but eat well and and exercise regularly. My weight is staying right where it should be.

[Solyesh]

My MPN Specialist indicated that potential weight gain is a side effect with HU but that it does differ person to person. Unfortunately ,with me I did gain weight and no matter how much I exercised or dieted was I able to take it off. There are others who luckily did not have the same experience. I would suggest speaking with your doctor - it was not one of the primary reasons I wanted to switch from HU to Peg (basically HU not working for me and giving more serious side effects than the weight gain) - but I did include it on the list when speaking with my doctor

[130396 in reply to Solyesh]

How do you find the Peg ? Does it have side effects?

[Solyesh in reply to 130396]

I am finding the Peg, personally, much easier to tolerate. So far no serious issues - I have some joint/muscle pain especially the day or two after each injection and some early morning stiffness that wasn't there before but have been able to fully resume my intense cardiovascular workouts and have lost 3kg since the switch.

[130396 in reply to Solyesh]

So you’ve not had depression as a side effect of PEG?

[130396 in reply to Solyesh]

Did HU affect your breathing?

[Solyesh in reply to 130396]

Luckily no depression issues related to Peg but also fortunate enough not to have suffered outside of Peg either - depression and overall mental health was definitely an area my specialist made sure we discussed prior to my switch.

As for HU and breathing issues, I definitely did have shortness of breath or rather lack of ability to push myself in cardio activities like I had previous to HU

[130396 in reply to Solyesh]

Had your breathlessness gone now you’ve changed from HU?

[Solyesh in reply to 130396]

Yes - I am back to being able to fully push myself during cardio activities...for what it is worth, my Specialist, who has been on top of everything, was not convinced any breathing/lung issues were related to HU although he noted that it can be a known SE..but given my other negative reactions to HU and the fact that things are "back to normal" post HU, I am going to say there was at least a casual connection...

[Cookiebaker in reply to Solyesh]

I have gained 20 pounds on hydroxyurea and that has been since January 2019 when I first started taking the drug . I daily walk but guess my body is used to walking and it doesn’t help. I feel tired all the time and force myself to do the walking. Plus metoprolol causes weight gain too. It is depressing.

[Oscarsboy]

When I mentioned this at Guy's I was told it was not a side effect of Hydroxy and that weight gain was more prevalent with some of the other drugs. I raised the question because I have seen how many on here have referred to it. I was told it would be more likely to less activity during lockdown! However I cannot say I am convinced when I read all the comments. I am on it also, since August but it may be a little too early to tell yet which way it is going to go!

[Hidden in reply to Oscarsboy]

Could be it has an effect on metabolism and also that it could be temporary. My chemo belly looks much flatter since starting a daily pre and probiotic. I also continue with exercising and restricting calories...especially carbs, though the addition of probiotics has been most noticeable. I'm working on getting back to my January weight (before I started treatment).

[Angelinagaffer]

Thanks, I was wondering why I was getting so big and unable to shift it🤔🧐🤭😂

[Aldebaran25]

I am also noticing weight gain after five months on 500 mg a day of HU, which I cannot justify , other than the HU. I have never been this heavy! I run three times a week and do body work too. I am also finding that exercising is getting harder. This, plus my love for being outdoors and in the sun (potential problem with HU, I use lots of sun protection) is prompting me to seek switching to peg. The problem is that I have skin sarcoidosis (in my case as a granulomatous dermatitis ) which may be considered a contraindication. I should also say that the HU is controlling my WBCs and it may have contributed to improving the skin sarcoid, which is now at a low grade level. In a couple of weeks I will be discussing all this at my next consultation at Guy's , but it is quite unknown territory, they told me sarcoid and MPN is a very rare combination. I am not sure how much to push for the peg, I am worried it could stimulate the sarcoid to progress (and that could be bad news as it can attack lungs, heart etc). Not sure how to approach this.