Sticky Blood-Hughes Syndrome Support
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Has anyone had problems related to "pancreatic insufficiency" leading to unplanned weight loss?

I've lost just over 2 stone (approx 12 kg) in the past year, unintentionally. Whilst I can fit into clothes two sizes smaller, so there are advantages (!), it's beginning to impact on my bone density, so not really a good thing.

My docs have been excellent at carrying out a full battery of tests, including for pancreatic cancer, but all have come up negative so far.

I'm now starting a course of pancreatic enzyme replacement tablets (Creon) to see if they help with nutrient absorption, but wondered if anyone had experienced anything similar and if it is any way related to APS?

Oh - Happy New year everyone as well :D

xx

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I don't have personal experience of this but my aunt has recently lost three stone unintentionally. She already has a RA diagnosis and has mentioned my diagnosis to her team. Tests for both Lupus APS so far are negative. I might also flag your post with her to see if her pancreatic efficiency has been tested. Thank you and i hope you get this resolved soon. x

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As Lissy says I have no personal experience of this either but wish you well with your treatment. Please let us know how you are getting on and a very Happy New Year to you too x

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Hi there, I found this for you in terms of it being an autoimmune condition: mayoclinic.org/autoimmune-p... and some info under this one with regard to Sjogrens.. and of course many with APS have Sjogrens and some without diagnosis. ncbi.nlm.nih.gov/pmc/articl...

I hope things can be sorted a little for you to calm it down. Mary F x

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Hi MaryF,

A BIG thank you for this - hadn't been able to find anything myself. Although I've always been considered as having Primary APS, a few Lupus markers have started to appear, so it's certainly something worth considering.

I'm a bit complex, having had a renal transplant and subdural brain haemorrhages when my clotting management was unstable, and also have a form of erosive arthritis which they haven't been able to identify, so when anything else shows up, I always like to do a bit of digging myself as well!

I'm under Beverley Hunt at Tommies, so will run the possibility of autoimmune pancreatitis by her along with my gastroenterologist at Guys. I'm due for an endoscopic ultrasound on 14th Jan and so will flag this up if they consider taking biopsies.

Happy New Year and I'll get back if it's of use to others :D

x

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Yes, she is my consultant amongst others.. and certainly within rheumatology in that hospital they will have come across this, one of her colleagues, certainly, glad to have been of help, helps me learn also go into Ms Marple mode. All the best. Mary F x

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Hi there,

I have never heard of this but I have gone from 8st 10 to 7 stone 7 in six months, i have aps, lupus, raynauds and sjogrens. I went to the docs after I had lost the first 10lb, got refered to gastro who wasn't bothered and told me to come back in 3 months!

Hope all goes well for you :)

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