Would anyone be interested in a Autoimmune Disease thread in Health?

[VioletLips]

I've asked MN Admin & they've asked that a post a thread on Site Stuff to guage interest.

On a recent thread it appears that they were quite a few of us who have IBD, (Crohn's disease or Ulceritive Colitis) and other conditions either associated with this disease or other AI disorders.

If you'd be interested in this as a new topic under Health please post on here. The more responses this thread gets the more chance of it happening.

Would be good to have a suppprt thread out there.

I honestly didn't know there were so many different auto immune diseases. My Mum died from an auto immune condition- a type of vasculitis, when she was only in her 50s. I'm sorry to hear so many of you are suffering.

I'm interested - hypothyroidism over here

Interested - hashimotos and celiac here.

I'm terrified how so many of us have multiple auto immune conditions. I read somewhere that once you have one, you are likely to get an additional auto immune condition every 10 years ....

Only palmoplantar pustulosis but worried as once you have one you tend to develop more AI conditions.

for those dealing with proper AI conditions

I know this isn't the point of this thread yet but... bebesidethesea - just wondering. Have you tried a gluten free diet? A family member has palmoplantar pustulosis, and would be interested to know if being gf has helped it for you? He hasn't tried going gf yet. (And he's never smoked.)

I'd be interested, UC here but 6mp seems to be working at the moment although I did have funding agreed for infliximab too.

orange
I have palmoplantar pustulosis
I went gf
It worked really well

As this is not in an obvious place .... Would it be allowed to put a thread in chat for example letting people know it's here if they want to join? I suppose it isn't going to be easy to find it so maybe wouldn't show how much interest there was in it!

Another one who cannot tolerate azathioprine, landed me in hospital for a week with liver problems. I'm on golimumab but it doesn't seem to be working after 6 months (I've been hospitalised with a flare a few month ago).

They are trying combined therapy now with golimumab and 6-Mercaptopurin but I'm only on a tiny dose as chances are it will fuck my liver up too

I've only had UC for just over a year and we are already running out of treatment options. Two more biologics to try then surgery.

I was found to have unusual antibodies several years and now play the waiting game until my liver starts to deteriorate from Primary Biliary Cirrhosis. Dd (18) has Graves Disease and Vitiligo, and Ds appears to have Reynauds.

Psoriasis, hidradenitis suppuritiva and ASD here (quite the catch), I'd be interested in this too

I would be interested too I have UC.

Me too, I have CIDP - chronic inflammatory demyelinating polyneuropathy, a neurological AI disease which affects sensation, power, proprioception in my limbs and face, also my balance and I get very fatigued, sometimes just from typing out its name!

Yes from me!

Psoriatic arthritis & psoriasis, and family history of a few others too

Oh and DS has vitiligo too

I also have a weird thing going on with my eye at the moment that may be related (though I also have eds and TN, so it could be related to them), I have a patch of "grey" vision that I've been waiting nearly 18 months to see the consultant for

Me! I have hidradenitis suppurativa and have never met or spoken to anyone else who has it.

Yes please, psoriasis and psoriatic arthritis here. Anti tnfs have failed for me, so now on interleukin inhibitor.

Yup hashimotos hypothyroidism here and rheumatism markers in bloods so that joy to
Come at some point! Good to share!

I'm just about to start Humira. I take mercaptopurine and octasa. I tried azathioprine but it made me puke all the time and I had pancreatitis developing. Ugh. Glad to hear that Humira is making people feel better. I have got some in my fridge but I've waited 4 months for someone to teach me how to use it. The hospital are being dicks.

Bobbin, I'm waiting to hear about biologics. Tbh the way I reacted to Aza & 6MP has completely put me off any meds for now and I'm glad I've got a few wks to think about it.

Currently on Octasa & pred enemas.

Jenny

I have it

Jenny, my eldest daughter has it and she is really struggling. Some dermatologists have been worse than useless but the one she has now seems to be making a difference.

I'd like an Autoimmune space too! I have antisynthetase syndrome with ILD, RA, skin problems and various random muscle issues that no one has got around to diagnosing yet! I'm hoping discussions on mumsnet would be far less po faced than on my other Internet forum for the disease. Theres lots of good stuff on there but also rather too many people posting whimsical / inspirational internet shite for my liking. That's even before I get started on the "I stopped taking my meds and I'm curing myself with vegan coconut oil and yoga" lot. Mumsnet will be a far better source of grim humour😀.

There are a number of online support groups for HS