rapid weight loss

[Jaq1971]

hey all just a question I was diagnosed with systemic sine sclerosis in November last year and have many issues but I have lost 3 stone in 6 months had anyone else had a rapid weight loss with this condition ?

[Shorty100]

Hi there. Yes unfortunately it’s definitely linked and my medical records showing “abnormal weight loss Very embarrassing as I now have all this loose and saggy skin.

I had to go to my gp every 4 weeks to be weighed, although the doctors never did anything but they eventually referred me to nutritionist High proteins, protein drunks chocolate, cream, biscuits, green vegetables and I eat lots of fruits Ironic to spend over 20 years trying to lose weight to now whereas I now have to gain weight bit of a catch 22 as pretty sure my blood samples would show high blood sugar or pre diabetic!

Ask if the medics can refer you to a nutritionist as they are the most helpful Good luck

[Jaq1971 in reply to Shorty100]

thanks for your response and yes I will ask as I am coeliac and dairy intolerant too makes things difficult for me currently in a flare up and my wonderful bowel has been in spasm for three days earliest GP appointment July what do you do lol xxx just have to keep plugging on I do have an appointment in July at royal free so hoping they may help me and have fortijuices prescribed by doctor

[Shorty100 in reply to Jaq1971]

Oh the joy of it all!! There are a few dairy, gluten and gmo free ones. Think Huel is one. I’ve got gastro problems and they have changed my meds to Famotidine now. Got diverticulitis and bowel prolapse for 3rd time and only thing they can do is stoma which I refused as use phosphate enemas which really help. It’s the bowel pain that’s horrendous isn’t it? Now an absolute nightmare getting an appointment too. Took nearly 3 years to finally get the specialist to arrange tests and found I have lung, heart, bowel, and kidney disease. What a good catch I am ha but I’m a fighter and see how others are far worse off. Ask specialist if she/he can arrange all tests for you. I honestly hope you get sorted. I’m helping one of the nhs universities with research as they want to see why it’s taking 2-3 years to finally get diagnosed, so hopefully with my input this will help future patients.

[stostee]

Yes, I too experienced weight loss, from 55 kg down to 42 kg. I was referred to a nutritionist and was also told, I think by the hospital, to go on to high protein drinks. I now weigh about 50 kg, which I am happy with, and eat a normal diet. My scleroderma symptoms seem to have disappeared, apart from the Raynauds, but I am not convinced they have gone for ever! I hope you gain more weight and things get better for you.

[Chicunique27 Administrator Volunteer]

Hi This is something I experienced in the early stages of my diagnosis went down from 56kg-42 kg. I was referred to a dietitian and I was given protein shakes that I can mix with water which I took at least 3 time's a day I also was advised to eat high protein food's and I tried to eat healthy ensuring I ate good fats. I also ate little but often as this worked for me my weight has gone up and its steady 52 kg. Your GP can help with referral to the appropriate agency so something suitable for you can be prescribed. Hope this helps and you can get your weight back up.

Best wishes,