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.

Violet, dc couldn't tolerate Azathioprine at all - made them feel terrible and hallucinate. Had to stop after less than 48 hours.

Not sure yet, just had further tests, another colonoscopy, chest X-ray, bloods etc to see what's what before they can apply for funding. I felt so awful on Aza & 6mp, proper flu like symptoms with vomiting, which floored me. I really had high hopes.

Currently just taking (mesazaline) and pred enemas, yay!

Due for follow up end of April.

Mine, awful isn't it

Some form of SpA on humira. I love humira.

Just to add to my lupus I have RA and Sjoegens and Raynauds- I'm fun when it's cold!

Il hop on if that's ok.
Graves' disease which has led to thyrosis and total removal

My adult daughter has t1 diabetes and another very rare ai condition (treated with same ivig drugs as ms)
Interested.

Another one with RA that says yes please
I'm on Humira (which is fab)!

Yes PLZ great idea op im in!
Have several ai conditions & would find it a great comfort and a good source of advise.
As other p&p' have said up thread you don't like going on about your aches & pains irl but on the bad days you end up doing just that, im always paranoid thinking it's all I seem to talk about and think people think (oh shut up) ha!
It wud be lovely to confide in fellow sufferes 😉

Thanks Mockingjay. I'm tolerating Humira pretty well so far. I was very anxious about injecting myself but it's actually really easy (clicky pen thing).

Yes the first few times was horrible now I don't think about it.

It's been better since they took a preservative out. Before that it stung to high heaven when injected but now comparitively it's great!

RA, CFS and other interesting stuff.
DD heading that way 😢
Such isolating and confusing conditions.
I would hope Mumsnet could support such a topic.

Absolutely

Piehunter - I have awful memory problems

Yes, I have UC. It would be a good thread I think, people need places to vent. It's nice to know you're not alone with your problems.

Yes!

DD1 has been diagnosed with Graves' disease/ thyroiditis and possible lupus ( she has antibodies apparently)

We are very new to all this as its been just five weeks since she became seriously ill with a thyroid storm and ended up in hospital

My husband has recently been diagnosed with MS I'm finding it hard to find help, support and information, feeling a bit alone at the minute.

Della I do too, my latest brain mri shows areas of ischaemia/micro-infarcts which would explain the memory horror and word finding issues. I've never had a diagnosable clot before though, I inject fragmin twice a day and have done for over 2.5 years now to manage migraines and the brain issues, failed warfarin and sinthrome, they just couldn't get my INR high enough.

Undergoing further testing at the moment for the abnormal brain scan and I've been having more and more nerve involvement, my bladder doesn't work properly (neurogenic so I self catheterise), numbness and tingling. My legs haven't worked properly for years and I use a wheelchair if I'm out of my own house. Have had periods of using crutches for longer distances. Lumbar puncture likely as MS keeps being suggested but brain scans not suggestive of it. I'm 25 and it all started when I was 15, long time with no full answers!

Anyone with Wegeners?

I'm collecting autoimmune conditions (it's almost become a hobby) I'd love to be able to share my experiences or even just rant at/with people who have similar experience.

Just wanted to add adalumimab(humira) was life changing for me and I had no side effects from it!

Interested!

Psoriasis, psoriatic arthritis and a couple of other chronic ailments!

hEDS here, definitely interested!

Piehunter, I have had some bladder problems. Am under St Thomas' had several PET scans, hypoperfusion in temporal lobe, am on aza, also awaiting a LP