Weight loss

[dordle]

Hi all. Has anyone experienced weight loss with limited Scleroderma, without trying!

[KatieAnna]

Hi dordleI lost a lot of weight because of constant stomach pain, vomiting, bloating and diarrhoea. I couldn't eat properly and was eventually diagnosed with SIBO and have antibiotics to treat it. I've put all the lost weight back on.

Good luck with your journey.

[dordle in reply to KatieAnna]

Oh you poor thing, glad things are improving for you. I do sometimes get diarrhoea/constipation but also have IBS and diverticulitus. Stay well.

[KatieAnna in reply to dordle]

Thanks and good luck with getting help.

[Misty2552017]

Hi. I was diagnosed with the same six years ago and when I started Micophenolate I lost about a stone in a few months. I’m still on it but haven’t lost any more weight,Hope this helps!

[dordle in reply to Misty2552017]

I also take Mycophenylate. Only had my problems since diverticulitus was diagnosed, so perhaps it is more to do with that. Putting off weighing myself again!

[obidos]

Hi, I’ve got Limited Scleroderma too and have recently lost weight but have no appetite, can only eat small amounts as get really bloated and uncomfortable. All of this is new. Do you have any symptoms apart from weight loss?

[dordle in reply to obidos]

Hello, I have the usual symptoms related with dry skin and bendy fingers and itching, but otherwise okay. I did lose my appetite at one time, but eating okay again now. Also have IBS which can cause diarrhoea/constipation, so never quite sure which causes what. I know there is bowel involvement with Scleroderma. Also have omental thickening (the membrane that covers the intestines), Rheumy Dr said this often happens with Scleroderma. Thought I might not be absorbing nutrients properly. Hope your symptoms improve soon.

[obidos in reply to dordle]

Hi, I have IBS too and have bendy fingers but the itching has gone off a bit compared to how it was. My consultant says he only deals with symptoms specific to scleroderma which he says are Raynauds, reflux, calcinosis, sclerodactyl and something else. He says that everything else - fatigue, bowel problems, tired muscles and sleep disturbances etc etc (does anyone else have these?) are a completely different diagnosis. How did you find out that you have omental thickening? Is your consultant sympathetic/good?

[dordle in reply to obidos]

Thanks for replying. Unfortunately my consultant retired a few months ago and I don't know who I will be seeing now. The specialist in Gastroenterology diagnosed the omental thickening. I'd had some IBS trouble, but could feel firmness/lumpiness following the line of the intestines; they also felt rubbery. My GP was concerned and referred me; I've had 2 CT scans and no other problems found. I found the Mycophenylate tablets helped with the itching.

[stostee]

Yes, I lost 1.5 stone in the early years without trying, but am now back to a reasonable weight.

[dordle in reply to stostee]

That's good, thank you.

[KathleenMary]

Certainly have,didn't know if it was the illness or the drugs

[dordle in reply to KathleenMary]

Difficult to pin down isn't it, mine's been since my diverticular problem.

[KathleenMary in reply to dordle]

😕👍

[Bluefoot]

yes, i have lost interest in food. Never hungry, i have to force myself to eat.

[dordle in reply to Bluefoot]

Sorry to hear that. I never feel hungry anymore, but do eat my usual foods okay. Think it must be changes to the intestines, perhaps causing malabsorption; I read that this can happen with scleroderma, so you don't get all the essential nutrients from your food.