Loosing weight

[catblue1865]

The rheumatologist I saw was most concerned that I'm loosing weight. Only weigh 6.5 stone now, she didn't think it was anything to to with any ctd though, has anyone with uctd lost weight as a result of the disease?

[OldTed60]

Hi. I think you posted very recently here about cold stress and capillersoscopy test for Raynaud’s? If your rheumatologist has requested these tests and is concerned about your low weight then I’d have thought they suspect Systemic Sclerosis rather than lupus. People with Lupus, RA, Vasculitis and Sjogren’s can often have Raynaud’s and some degree of weightloss secondary to disease activity. However both are very strongly associated with Systemic Sclerosis/ Scleroderma, which almost always causes severe Raynaud’s and GI symptoms, leading often to weightloss, as hallmark of the disease. I have certainly lost a lot of weight due to Systemic Sclerosis although it is levelling out now that I have a stoma and am treated, 6.5 stone is a very low weight though - hopefully they will be able to get to the bottom of it. Do you find it hard to eat or keep food down?

[catblue1865 in reply to OldTed60]

Thank you for the information, I don't find it hard to keep food down at present but in past I have even water.

[OldTed60 in reply to catblue1865]

The Scleroderma & Raynaud's UK/ SRUK charity might be helpful to you for your Raynaud’s and with nutritional advice. I joined some years ago and the magazines are excellent - I’ve learnt so much from reading them. There’s a Doc Spot column with Prof Chris Denton where people ask for advice and he responds. I find reading about the experiences of others with same conditions helps put my problems in some useful context. Same with Sjogren’s although mine is quite well controlled these days although I have very dry mouth and the severe light sensitivity still causes migraine so I see a neurologist for this.

[redmaggie in reply to OldTed60]

Hi there, thanks for the tip about the magazines, that's helpful . best wishes.

[Jrob14]

my husband had his first flare of mixed CTD in aug 24, this was very severe and he actually lost 3 stone in 8wks!

Luckily as the gastro symptoms have improved he’s managed to put most of the weight back on. We were told by the 4 consultants my husband is under, thst weight loss was definitely due to the CTD

[Halfwayuphill]

Hi, I agree with everything Old Ted said. I have UCTD with systemic sclerosis features and have been seen at the Royal Free yearly for over 20 years. I lost a lot of weight initially and recovered before I saw a rheumatologist. In the mean time my thyroid was removed as it was swollen and they thought that was causing my choking/ talking problems. The endocrinologist found my high RNP antibody but didn’t refer me to a rheumatologist.. I was left with mainly scleroderma symptoms but my weight recovered. About five years ago my gut issues worsened and I developed bladder issues. I now weigh 6 and a half stone from my usual for years of 9. It has stabilised somewhat with rotating antibiotics although I still have days I can’t go out and it’s difficult planning ahead and I have to modify my diet a lot.

They stepped back from diagnosing me with systemic sclerosis because I don’t have ulcers and my Raynaud’s is not as bad as some. Instead I’m UCTD with scleroderma features. Mild scleroderma was mentioned. I still get autonomic nervous symptoms and have the usual bent and swollen fingers for years which I suspect you may have. I also have developed Erythromelalgia and I’m hyper mobile.

Do hope you get some answers.

[Pippydo]

I suffer with lupus, Sjorgrens and lung disease as a direct result of Sjorgrens. I’ve lost weight and now weigh 6.7 stone despite a healthy appetite. The rheumatologist I see tells me I have to eat more despite me telling him I eat well!! I get very frustrated by comments like that alongside him telling me fatigue is very common and not to worry about it, not helpful at all!

[redmaggie]

Hi there, I am also in the 6 and and half stone club 40.5kg latest & BMI is about 16 (i'm UCTD) . I have a small frame and fairly slim, always been able to eat anything so never dieted. It does bother me too as we all need muscle, and some bulk to keep warm! Now I slowly lose weight and cannot restore it despite eating well. It seems everytime I'm unwell/flare/exhausted I lose weight and it stays off. Im having gut problems too so that can affect my eating capacity I guess. Given that others here have this same problem I think it is likely part of the autoimmune. I asked Prof Denton about it and he put it down to malabsorbsion. That's the only info I have had. I hope you get some answers and please share here! best wishes.

[MusicalFurbaby]

Hi Catblue, I lost weight last year—about 10kg quite rapidly—but it turned out to be due to a hernia and stomach ulcers. I had surgery and 12 months later I’ve put 4kgs back on. While I was losing weight, my specialist suggested I take Sustegen daily to try and keep my nutrients up. But even then, I continued to lose weight. I actually felt like my body was not absorbing nutrients; it seems insane to say it, but that’s how it felt!

The only thing that really helped me was the surgery, as that dealt with the root cause. But you could try a meal supplement as well, and see if it makes any difference. All the best 🌻🌈✨