Hi, looking for information sources if anyone knows of any

[Loobie72]

I joined here back in 2018 when I was certain my symptoms fit lupus. However a professor of rheumatology disagreed and I’ve since been diagnosed with multiple autoimmune conditions ( psoriasis, PsA , hashimotos, MMP).

A couple of years ago I started getting strange blisters, dismissed by doctors as heat rash, chill blains (in summer 🙄) and so forth. Eventually, my MMP consultant recommended I be sent to a blister specialist, who, after repeated biopsies & blood tests, has concluded I have cutaneous lupus.

I’m also under surgeons because despite having my gall bladder removed, I’m still getting pancreatitis ( had an endoscopy last month, no physical cause found)

I’ve also been getting random blips in my liver & kidney function tests that spontaneously resolve.

Has anyone else had similar or know of any resources that could help me? All I can find is that lupus can cause pancreatitis but it’s rare. Tbf, nothing about me is normal 🙈😆

I also have an auto inflammatory issue, cyclic vomiting syndrome, endometriosis, fibromyalgia, asthma & my head is a bit wonky.

[Chris21]

Hi Loobie72, thats how i got diagnosed with lupus sle by having a few bouts of pancreatitis despite having gall bladder removed, they kept saying you must have some stones somewhere 😊 consequently more tests eventually showed lupus sle, this was after years of being told i didnt have lupus as it hadnt shown in bloods.

I also went on to have more diagnosis added, sjogrens, raynaulds but i also had PBC (primary billiary chloangitis)added, my bloods were showing problems with the liver, I had no pain or jaundice. id never heard of it!

when i looked it up it made sense as its to do with the bile duct and im guessing would also fit with getting pancreatitis often 🤷‍♀️ i now see the gastroenterologist yearly and on another medication to keep it under control. since then, Ive not had pancreatitis 🤞

don't know if this helps?

[Loobie72 in reply to Chris21]

This helps so much!! Thank you - I was starting to wonder if I was going a bit batty and imagining things, I’m going to ask the surgeons on Monday for a rheumatologist referral (my maxfax guy gave me a name to ask for - he’s amazing - Steve Bond if anyone needs an amazing maxfax guy) and not be fobbed off this time! It didn’t seem logical to me that dermatology dismissed the pancreas, liver & kidney blips when sle is renown for attacking organs, they’ve been great about the skin involvement but can’t seem to see the bigger picture.

Thank you so much for your help, seriously, I know I’m not imagining things for sure now 🥰

[Vixen2]

Is that all???? Wow & i thought i had it bad with RA, Iritis (serious eye disease & Glaucoma). But i’ve had Endometriosis. Thanfully, the good old NHS sucked it all out of me. (Plus i’ve had polycistic ovaries). You’ve been so unlucky with health crap. Sorry i can’t give any advice. Although you sound like you have a great sense of humour. All i can say is. Keep laughing!!! Humour is the best medicine. Good luck. X

[Loobie72 in reply to Vixen2]

😂🙈 yeah, just a couple of lil things!! 🤭

Iritis sounds horrible, I hope it goes into spontaneous remission for you (we’ll celebrate with cake!!) 🥰 xx

[Vixen2 in reply to Loobie72]

Hey. Iritis is a bastard. I’ve had it for 30 yrs. I have loads of flare ups. Especially when i’m stressed. I’ve had loads of steroid injections in the eyes. Millions of steroid eye drops. 2 cataracts removed. Loads of other eye operations. Now i’ve been told i’ve got a hole in my right retina. Going to have an op soon! That’s why CAKE & BOOOOOZE!!! always ‘eases’ my pain a little. (Literally). It’s actually my bday on Thursday. (53). So i will be ‘comiserating’ with my partner. Wine will defo be on the menu. (He’s a great cook too). It’s good to have a sense of humour. Good luck with your health stuff. X

[Loobie72 in reply to Vixen2]

Happy birthday for Thursday!! 🥳🎊🎉🎂🎁🎈❤️

Drink all the wine 😁🍷🍾I hope the op is successful 🥰❤️

[Vixen2 in reply to Loobie72]

Too right!!! & thanks about the op. 🤓🤓🍰🍰🍷🍷🍷🍷🍷