Have an unknown auto immune disease , now given oral steroids budesonide & sulfasalazine

[melsy]

Its caused many symptoms and body function issues; I have proctitis,(which is taking some time to treat & still have symptoms after 2-3 wks of meds combi bowels/blood/mucus/weight loss),euralgia in the body ,rashes , tiredness, giddiness and IBS to name but a few.

They have said they may never work out what disease I have and have told me it will take months to stabilise/go into remission and that many people dont get flares for 2-3 yrs if at all again.

I just wondered if anyone else has the same kind of issues?

Ive been given sulfasalazine to help with euralgia/arthritic type discomfort in my whole body, as I get pains and numbness. I was told it may give me a headache if I take to higher dose to start. I was on mesalazine, but that doesn't help with body pain. So it all got changed on Thursday. I took my 1st 2 yesterday & I ended up with a migraine attack well into the early hours with vomiting. Im not sure what induced this as had been in a shopping centre well known for triggering these. I also had taken 2 of my 3 budesonide, (very unusual drug as normally used as a nose spray, but this is a tablet form).

Ive decided to only take 1 instead of the 3 sulfas and gradually increase it and see if it does anything.

Im finding it really hard to maintain weight & have dropped another 2lbs from the sickness last night.Im on quite a ltd diet, (recommended I reduce wheat,dairy, eggs & red meat, also cruciferous veg and fermenting veg)!!

I suppose Im just looking for somewhere to talk , as its all quite anxiety inducing and exhausting and family don't always quite understand.

Have you googled lupus. My mum has been diagnosed with this recently and as quite a few of your symptoms (weight fluctuation, pain, rashes and tiredness).

Apparently it is difficult to diagnose and my mum was poorly for a couple of years before diagnosis.

I dont know very much about it, just what I have read on the net so probably not the best person to give any advice I'm afraid.

budesonide capsules (entocort or budenofalk 3mg)are normally used and solely recommended for crohns disease ( see patient info leaflet)which is what your symptoms sound like. My friend has crohns and it took the doctors 5 years to diagnose her. Auto immune diseases are really difficult to diagnose as some of the symptoms are so similar for each disease

Long shot but the digestive symptoms you mention and the diet you have been advised to follow reminded me of Candida. From what I remember it can cause immune system problems.

blood mucus and weight loss,IBS pain all add up to Crohns for me.the tablets should begin to help soon

Breathes a sigh of relief, others more in the know than me have come along

You most likely need to remove wheat & dairy, not just reduce them.
Then, things will probably first get worse before they get better as they have to get out of your system.
I wouldn't rush to steroids, as they only mask the problem and check the risks/side effects first.
Are you aware of gluten-autoimmune conncetion? If not look up celiac.com and also their forum, all your symptoms are consistent with gluten/celiac and at the severe end too. Diet works for many, but not always from day1.

I have had similar symptoms to you. I have had a horrendous rash mostly on my legs but covering my whole body. I have had joint pain, swollen joints and legs, stomach pains/cramps, headaches, etc etc
I have been to the doctor about 5 times and to the assessment ward to the hospital. As I had protein and blood in my urine. They say it is auto immune but told me to treat with paracetamol as I'm breast-feeding. I have a referal to skin specialist so the rash was so bad. I have been feel sick since early nov but the rash is nearly gone now so not sure if the skin specialist will be able to do anything.
I had the same thing 3 and a half years ago which they said was a virus. The doc at the hospital said that I will get flare ups throughout my life and I must go to get a bloodtest each time to check kidney function.

What kind of rashes?
If they are hives try googling Mastosytisis.
Long shot though.

Sorry, that would be Mastocytosis.
Mistyped the fist time.