Undifferentiated autoimmune disease

[RobertSmithsLipstick]

At least, I think that's the name for it.
As it stands, it is what I have, and it has torn my life into pieces.

As far as I know, it is multiple issues, but not enough like any one kind of auto condition to say "Yes, it's that one".

Has anyone else been diagnosed with it, please.

It apparently is a recognised diagnosis in its' own right.

Sorry to hear that. I do think that most people with an auto immune disease have lots of related issues. I have RA but also asthma, exzema and lots of allergies. All I presume because my immune system is crap.

Do you have a treatment plan?

No, should I have one?
That's how ignorant I am about all of these things.

I seem to be going to and fro from my gp to the rheumatologist without much being explained to me.

My gp has said even the rheumatologist isn't sure what it is o have, so lots of blood tests to do, over the course of many weeks.

I have been put on steroids, and feel fractionally better, but am still housebound, as I'm in so much pain.

Steroids are a good start whilst they try and figure out what it is.

What are your symptoms? There is a lot of overlap with autoimmune conditions and it can be quite difficult initially to know what’s what. Sorry that you’ve been feeling so unwell though but hopefully the steroids will continue to take the inflammation down.

Yes, what are your symptoms? I have ulcerative colitis, but it comes with quite bad joint pain as well as the colon issues.

Thank you.
I really appreciate the chance to ask normal people, rather than attending numerous appointments and blood tests and being no wiser!

Symptoms.
Dry eyes (eye, singular, as it turns out)
Hairloss.
Breathless.
Multiple skin rashes.
Joint pains.
Breathless.
Pins and needles.
Numbness/ loss of fine motor skills.
Inflamed liver.
Terrible fatigue.
Memory issues.

There are more, but I've forgotten!

I have undifferentiated inflammatory arthritis - I don’t fit any of them! I also have thyroid problems and have autoimmune fertility issues.

I’m on methotrexate injections and hyroxychloroquinine (Trumps ani Covid drug!) I can’t take steroids due to cardiac issues.I’ve been on meds since March and am much more mobile.

They’re not easy conditions to diagnose or manage. Gl xx

I'm on multiple pills, and now loads extra added due to the liver issues.
I havent been further than my washing line since the end of August.
I'm just so exhausted with it all.

What are the multiple pills and when did you start them?
I ask because many immunosuppressive drugs take a long time to work, often three months. So if you don't see a difference right away don't give up.
Steroids though should make a difference quickly.
I take steroids plus Hydroxychloroquine and sulphasalazine.

Have they properly checked your thyroid including antibody levels and at least 2 different points in the same month to rule out graves disease? I was told I had some unknown autoimmune condition too until a fertility consultant identified hashimotos. The treatment helped control my pcos too

The pills have built up over time.
Predisinolone. (Steroid, bit I know I've spelt it wrong, too tired to go and look at the box though!)
They were started, then stopped because I had an eosophagal bleed, now started again about 3 weeks ago.
Propanalol - also for bleeding. Started about 2 months ago.
Zapain - ages I have had these for.
Vitamin D. A couple of months ago they were started.
Amlopidine.
Indapamide.
Olmesartan.
Omeprazole.
Sertraline.
Eye drops.
Atorvastatin.
Tranexamic acid.
Azathioprine.

Think that's "all".

The last 2 are recent additions because of bleeding.
Also ferrous something (iron)

I don't think my thyroid has been particularly checked apart from at the start of my problems.

I'm on a roll here!
I also need to add that I feel absolutely bloated up with fluid.
It's as if its poisoning me, bit by bit.
My legs are swollen constantly, not massively, but enough to pit when I press. It's so uncomfortable!

Azathioprine is normally to reduce inflammation - did you have bloods done before starting it? The symptoms you have sound like they could be a type of vasculitis. Is your crp high?

Have you had a ct scan or mri?

Yes I've been having blood tests which the rheumatologist has sent me for.
He isn't the most forthcoming of people and I dont understand any of this.
I haven't had an mri with regard to all these issues, I had one months back on my head as my mouth drops down like i have had a stroke at times.

I'm sure my crp was high on the last blood tests I saw.
I am now attending 2 different hospitals, who have different forms for the tests.
It's so exhausting!

Still my gp, up until a few weeks ago was insisting my results were fine.
I'm sure this is why I'm so overwhelmed with so many issues.

It's been over 18 months of fighting to be listened to.

Pretty sure artovistatin can cause/exasperate liver problems as I’m on it and think I read that. Perhaps this is something that needs re-looking at?

That's the thing, too.
I'm aware that I have significant liver issues, and I am taking all of these pills.
Currently waiting for yet another liver scan.
This will be scan number 3.
The results of the last one give a list of cirrhotic changes, a swollen spleen, portal hypertension.
I'm teetotal, by the way.

@raviolo

Azathioprine is normally to reduce inflammation - did you have bloods done before starting it? The symptoms you have sound like they could be a type of vasculitis. Is your crp high?

Have you had a ct scan or mri?

I was given azathioprine as an immune suppressant. Its brand name is Imuran. I found it quite strong and it caused me nausea and some altered liver function.

How old are you? Have you considered Ehler’s-Danlos Syndrome? (Hypermobile type) *Not everyone has obvious hypermobile joints, btw…
Another thing to think about is menopause or perimenopause.

I'm way past my menopause, which I sailed through.
I'll have a look at Ehlar s Danlos, though.

Have they tested for any autoimmune antibodies? Testing for all of them should give a better idea if it’s grave’s, lupus, vasculitis, etc

If they've given you iron tablets then it sounds like your levels are low? Do you know what level they are at? Have you had your B12 and folate checked?

I've been told that all of those levels are low for me because of autoimmune issues and some of your symptoms would fit with low iron/B12.

Obviously I'm not saying it would fix the autoimmune symptoms but if those levels are low then it would definitely help to get them up. I've recently had an iron infusion and am having B12 injections. I've also been told that diet and stress levels have a big impact on autoimmune diseases so am trying to address those now.

Feeling unwell and not really understanding it is so horrible.

What kind of skin rashes?

Scleroderma can affect the skin as can coeliac disease.

My gp gave me the iron tablets last week because I told him about nose bleeds and elsewhere bleeds (liver?) I have been vomiting a small amount of blood, too.
Skin rashes, oh so many!
Patches like giraffe markings on my shoulders and sides.
Scaly skin with raised welts at times.
Head full of raised scabs amongst the bald patches. (They're painless)
Some huge, hard whiteheads around my neck and collarbone.
Oh! Happy days..