Weight loss

[Andra13]

Is weight loss common with ET? I realised I was losing weight last year before I was diagnosed, it was gradual not alarming but my clothes seemed to be a bit looser. I was diagnosed in February and weighed 8 stone, went to see the consultant last Thursday and weighed 7 and a half. I haven’t weighed myself in years so don’t know what my normal weight is,I would guess about 8 and half maybe 9

[charl17]

One of the symptoms that led to my diagnosis 5 years ago was unintentional, slow weight loss and lack of appetite. I still have little appetite. I have no spleen for the last 50 years so this was not splenomegaly. I dealt with the weight loss by eating slowly and eating nutritious snacks. It is important to maintain your weight because you can lose weight rapidly if things go downhill.

[Jlah]

Hi. I think it can be. I’ve lost over 12kg in the last year. Diagnosed in November after a stroke. I agree re post about trying to eat well. Whenever I have a bad spell I lose a kilo in a week. I have re introduced some unhealthy food and am now holding my weight. Probably not recommended but I actually feel better for it! Hope things go well. Jacquie

[Andra13 in reply to Jlah]

I’m having ham and pineapple pizza with coleslaw and potato salad for tea tonight. Probably not all the major food groups but im looking forward to it.

[WileyFrench]

I had lost about five pounds for no apparent reason and the docs checked for enlarged spleen, because apparently that can be a cause, but my spleen is fine, and even though diagnosed with ET after BMB, the slight weight loss hasn't negatively affected me. But you could get them to check your spleen for any signs of enlargement, just as a "just in case".

[Charlieapple2018]

I lost nearly two stone in the year leading up to diagnosis, but things have stabilise now.

[lizzziep]

I put weight on!!!

[Andra13 in reply to lizzziep]

So it affects us all differently ?

[Sheryljean in reply to lizzziep]

Me too! It seems weight gain is a side effect of Jakafi! Dang it...😳😳😳🤔

[Cja1956 in reply to Sheryljean]

Yes, I’ve been taking jakafi, as well, and it is definitely causing weight gain. I think it’s because my appetite is better. I don’t have the feeling of fullness when I eat since I started taking Jakafi. So I don’t mind the weight gain because I feel healthier.

[Sheryljean in reply to Cja1956]

Just would like to loose about 10 lbs. but like you said, you can eat now. I get cravings around every two to three hours so I drink lots of fluid to counter them..

[Cja1956 in reply to Sheryljean]

Good idea.

[Molly2009 in reply to lizzziep]

so did I

[Cookiebaker]

Me too!!

[BloodZero]

I have been diagnosed with Et for about 10 years now, but i gain weight very easy. I love good food and have a great appetite. Its a battle to keep my weight in healthy levels.

However, when my spleen started cramping (pre-hydroxy) and i was also getting reflux. I ate less because it was unpleasant now. And i was loosing about 2kg a month and got noticably thinner. Once on medication and those symptoms went away i was back to eating full on.

Regards

Steve