weight loss

[Anniw]

hi I have suffered from significant weight loss recently after having an episode of increased heart rate and total body muscle pain with weakness. I was out on antibiotics and prednisone which has helped somehow. Now my body doesn’t look like mines anymore since the weight loss. Anyone ever experienced this? I am due to have a bronchoscopy as the myfortic seems to not be working as it should and a heart MRI as well. Would like to know if anyone experience anything similar and how do you deal with it all.

[Pomoc]

So sorry to hear this. But when did you get diagnosed? My wife had enormous weight loss in the first 6 months of scleroderma/Raynaud’s but things stabilised with treatment. Hopefully you will get the right support with food supplement/proteins and nutritional advice., if they are not already giving that. Otherwise, insist.

[Anniw in reply to Pomoc]

I have been diagnosed since 2017 but the recent dip in weight loss has been in recent times. Micophenalic acid myfortic didn’t agree with me and then I got a bit of check infections twice plus entire body pain which they say is inflammation related. Now on the mends from a bacterial infection in my lungs and starting to get a bit of appetite. I begged for dietician support which they rejected twice so now I am just trying to do my best until they pay me attention. I have intolerance to milk which only makes me get more inflammation so I will see what I can do for weight building.

[Pomoc in reply to Anniw]

Right, it sounds very tough. Have you been taking high quality protein drink to supplement diet, which are nice with coconut or almond milk like a smoothie? We found them v useful. My wife uses the Free Soul version blended specially for women.

[Anniw in reply to Pomoc]

Oh no can you tell me where you get your protein powder from. I would love to know. I do take the ones in the shop not sure how much good it is doing though.

[Pomoc]

You can order it on Amazon, the version for women.. It’s not cheap but superior to those things you can get at Boots etc. My wife feels stronger any time she has it . Obviously we are not medically qualified but till you get sorted I believe it will help..

[kimmo]

Hi, I’ve just read your post and can empathise completely. I was diagnosed in 1996 but took a turn for the worse in 2010 and put on mycophenolate, amongst other things, after losing internal organs. It’s worked well for me until last two years when I’ve had kidney involvement and shortness of breath symptoms. Heart investigations at the moment and I lost 12kgs from November to January. Had an endoscopy but consultant told me he couldn’t see anything sinister.

I think all these tests are going to eliminate what they are looking for as when I’ve researched the side effects of mycophenolate my symptoms tick most of the boxes! Systemic sclerosis is an insidious disease but over the years I have come to the conclusion that a positive mindset has kept me going and I refuse to let it define my life. We all have good and bad days, but I remain thankful for every day since 2010 when I woke up in ICU and lost one month of my life. Stay strong 🥰