Weight Loss and Systemic Sclerosis

[Anniw]

Hello Everyone

I have realiaed that in the last 8 months I loss 17 lbs and has had frequent infections and pnuemonia. Now am really wondering if something is is going on. The doctors hvae me doing a set of tests, ST Scan on my lungs and I have to also do a gastrophy test. Anyone else has ever been through rapid weight loss with scleroderma and any thoughts.

[Lupiknits]

I now realise this was my first symptom. I had a lot of acid reflux but most of all, problems getting food through into my stomach: it kept getting “stuck” and I’d have to encourage regurgitation (sorry) to bring it back. That was nearly 10yrs ago. Just when Prince George was born, which helps me date it.

My GP fast tracked me for an endoscopy, which showed ulcerations in my oesophagus, but nothing sinister. I went on with Omeprazole and very soft foods for some time. I also began to have more digestive issues all through! The weight loss became quite pronounced.

Later, I developed hand problems, which led to a Rheumatology appointment. I had blood tests which showed I was ANA positive and Anti-PM SCL-70 and RP 115 antibodies, then a nailfold capillaroscopy which showed abnormalities: what I thought of as regular “ cold hands and feet” was secondary Raynaud’s.

For some years I simply had a connective tissue disorder, because of other crossover symptoms like very dry eyes and the need to hide from the sun. The scleroderma wasn’t presenting as definitive.

I’m now on hydroxy and Mycophenolate, with Iloprost infusions every month after a definitive diagnosis of systemic sclerosis. We tried prednisone but that made me somewhat manic.

It’s over the last few months, since starting Mycophenolate that I’ve begun to gain some weight, though I need to be very careful with my diet. and have episodes of gastroparesis, but am now able to tackle food I couldn’t before. I have to chew food a lot, and eat slowly. Cadbury’s and M&S wine gums have been an ally! Covid has put into abeyance any procedure to help with faecal incontinence. Metronidazole taken for a week every month has helped the SIBO.

I’m due to have a nuclear lymphaniogram to see if the very stiff and swollen lower legs and feet to determine if I’m developing lymphoedema.

I have a kind of Erythromelalgia in my feet and lower legs, not connected to anything else according to my Rheumy. TBH that’s the condition that I find the most troublesome. It’s there 24/7, with the scalding sensation not relating to whether they’re hot or cold. Nothing helps the discomfort so far.

I’m fortunate to be taking part in research conducted by a very well known expert in scleroderma. As far as I’m concerned, that means very close attention, Rheumatology directs all of the referrals and treatment, and I like plus I like helping them try to find a way to diagnose scleroderma faster. Apparently it usually takes 5 yrs.

I’m sorry this reply is so long, and remember, every person’s journey is different. The short answer is that my journey started with losing weight for no discernible reason, but we can now trace that back to early scleroderma.

[trunchalobesity]

it sounds like malabsorption and you should speak to a specialist gastroenterologist as soon as possible x

[RosemerryVenet in reply to trunchalobesity]

I have malabsorption and was referred to a nutrition team. I have an infusion of magnesium six days out of seven, which I give myself, and a litre of St Mark's solution every day because of my high output stoma. My levels are now within the normal range. These things are a nuisance, but as my daughter says, "They saved your life, Mum."

[Anniw in reply to RosemerryVenet]

Thanks for the info. Did a endoscopy which showed normal waiting biopsy results. Now having pain in my back and soreness in mt throat from that procedure.

[Anniw in reply to trunchalobesity]

Thanks! I have been referred and sent to do an endoscopy which showed normal but awaiting biopsy results. Now having pain in my mid back and soreness in my throat to my esophagus

[Jaq1971]

yes since November I have lost 3 stone mostly because I can’t eat without food getting stuck and making me vomit I know have fortisips to help me when no food will not go down I have been put on nifedipine and this has helped a bit so here’s hoping my weight will stabilise xx

[Anniw in reply to Jaq1971]

Thank you for this.