weight gain

[Sunbathing]

hi I’ve ET Jak2 and take HU

I’m 50 and have gained so much weight I can’t lose weight I’ve been walking daily and watching what I eat I know this could be down to the menopause why I’m not losing and gaining weight.

Can I take a weight loss supplement

Herbalife , slim fast meal supplements as need to lose a few pounds it’s making me miserable it’s hard enough some days dealing with the disease but my weight is effecting me.

Any help or suggestions

Thanks x

[Spanelmad]

I was the same but contacted the local health and wellbeing team in my area for help. I've gone from fatfree to full fat!! I have protein in every meal and restricted my carbs.They have been a fantastic support and have completely changed how I eat, plus I'm 3 stone lighter.Most areas in England have one and you can self refer, go on the nhs website for more details.

[Sunbathing in reply to Spanelmad]

Wow that’s amazing 3 stone loss !!

Well done

I will have look at this hopefully in my area too 🤞🏼

Many thanks x

[Spanelmad in reply to Sunbathing]

Give it a go they had group sessions or 1 to 1 which I did.But they drilled down my diet to what wasn't working.Id tried all the diets and nothing worked.I take a lot of meds for RA as well as ET and thought this was my lot.

They just kept trying .

Now my problem is that everything is huge!! So I'm now replacing my whole wardrobe.

[Hopetohelp in reply to Spanelmad]

Wow that sounds really interesting

[Spanelmad in reply to Hopetohelp]

Well worth a try ! And it's free

[Sunbathing in reply to Spanelmad]

I’ve contacted them they say I don’t meet the criteria?

So can’t help me ……

I live in Bexley Greater London seems different areas offer different help

Will speak with my GP to see if they can refer me

[Spanelmad in reply to Sunbathing]

It might be your BMI is lower than there threshold. Definitely see if your gp/te can do a dietician referral.

[Spanelmad in reply to Hopetohelp]

Yes the dietician was really good understood that I wanted a way of eating not just to.loose weight

[william-Indo in reply to Spanelmad]

This is the way👍👍

[johnnyjumpups]

I have gained weight on HU. Since the very first dose, I started gaining. I was eating a very healthy diet at that time. I still try to.

[Ipadlin]

I’ve been on hydroxy for almost a year and am very fortunate to have few side effects - though weight gain is definitely one. My diet and exercise habits haven’t changed but I’m about to go up a dress size, even though my BMI is still within the acceptable range.

[Sunbathing in reply to Ipadlin]

I’ve gained 2 dress sizes in a year of taking HU

Consultant says it does not make you gain weight

But it does 😞

Feeling crap with the gain of weight I can’t come off HU either as had a stroke

X

[Stargaye]

I can understand how you’re feeling. Yes… I’ve also put on weight.. 7-8 kgs in last 14 months which is length of time I’ve been on Hydrea. I eat healthy .. no junk food and minimal alcohol. I’m reasonably active…. Strive for my 10,000 steps a day and 45mins exercise… don’t sit around. So what else can it be? Convinced it’s most likely a metabolism issue? looking at trying a meal replacement shake for one of my meals. See how it goes. Find its soul destroying .

[Mazcd Partner MPNVoice]

hi Sunbathing, there is some very useful information on the NHS website - Better Health - lose weight nhs.uk/better-health/lose-w...

[Ipadlin in reply to Mazcd]

Thanks for the link but what do you when you are already following the advice, as Stargaye and I are, and the weight is still going up????

[Mazcd Partner MPNVoice in reply to Ipadlin]

I would suggest that you speak to your haematology clinical nurse specialist for advice, maybe to discuss whether or not being referred to a dietician might help.

[Ipadlin in reply to Mazcd]

It seems such a minor thing compared with the side effects that others have to deal with, that I've been reluctant to say anything but I guess it doesn' t hurt to ask. Thanks for the prompt.

[ciye]

I have gained 4 stone since resuming hydroxy, I gain 3 stone the first year. Switched to peg lost that weight but my peg journey was horrendous. Switched back to hydroxy after a year and boom. My gp prescribed Xenical as I had asked about weight loss injections. Xenical caused heart palpitations I didn't enjoy. It's hard work losing weight I have only manage to drop a stone in 12 weeks I was aiming for that. I would love to stop hydroxy and see if my loss would be more.

[Sunbathing in reply to ciye]

Well done for a stone loss

Keep going x

[Lndcr4evr]

Has anyone tried any of the GLP1 medications? In addition to obviously helping with weight issues, I would think they would also be very helpful to those of us with ET-JAK2 pos, as they attenuate platelet aggregation!! With the loss of weight, we would also get decreased inflammation-which should decrease symptom load, all while having a protective effect on the heart and kidneys. It seems like these medications would do a lot for us. They don’t lower platelets, but if they help with everything else, I would think it would be worth a try! Does anyone know if this is an option with an MPN. HU has made me gain a lot of weight as well!

[Mazcd Partner MPNVoice in reply to Lndcr4evr]

this is something that would need to be discussed with your haematologist