Awaiting diagnostic in the meantime Ive started to be a regular patient in A&E , started to have unusual allergies. My right eye , the sclera was completely filled with fluid and part of my face was swollen.
Yesterday my whole face was very itchy and had under skin small pimples. They gave me prednisolone and is getting better.
Now I've started having uncontrolled twitching in my arms and legs especially when resting....I'm really down atm , is way too hard.🥺🥺🥺
What an awful situation to be in...you would imagine from results already in and a rheumy referral pending (from your last post) that A&E would have called in a rheumy...GPs can't order all the blood tests a rheumy can for lupus/autoimmunity assessment...you could try contacting the rheumy dept to see if your referral could be upgraded to urgent, given the severity of your symptoms...if not, then Prof D'Cruz might be a good idea....wishing you all the very best xxx
I've told a&e about my medical hx but they kept me in for a few hrs and discharged me with prednisone. I took it and I don't know if is a side effect but I was sweating mad last night. I called my nephrologist secretary and obviously no reply as yet and is bank holiday as well tomorrow so I guess I'll hear by Tuesday.
I have received my rheumy app which is in July, don't think I will last that long. I'm done to 46 kgs already , I'm very weak. I'll get all my results hopefully soon and make an app with lupus centre . 😥😥😥
Go for it, that's shocking to be left to deteriorate to that extent...and then to be discharged by A&E, though there's probably no rheumatologist around on the weekend...someone will be along soon with a reply to pred and sweating...keep posting and let us know how you go xxx
Thank you so much for your replies, I just hope to put an end to all this suffering soon.
Hang on in there, once Prof D'Cruz has you diagnosed, a proper treatment plan will put you on an even keel, it might take a while to work out the best combination of meds to fit your version of the illness (each one is unique) but it'll come xxx
Hello Theodora23,
With what your saying about allergic reactions this is how my symptoms started, way back when I woke up extremely swollen, eyes wouldn’t open and fluid leaking from my ears. They never did find a reason for what appeared to be an allergic reaction and I’ve battled ever since. I’m under D Cruz and his registrar and they really listen. I hope you get sorted soon x
Firstly let me give u great big but gentle cyber hug 🤗🤗🤗
I'm sorry to hear that you're having such a tough time at the moment!! But im glad that the prednisolone is helping!! U don't say how much they gave u or if u r tapering down etc so I'll just tell u about my experiences with pred.
The first time they were prescribed for me was when I was admitted to hosp via A+E with an all over horrendous skin rash which they thought was severe allergic reaction to flucloxacillin!! The pred really helped n I was discharged 4 days later with my skin shedding something awful..I had 20mgs per day for two weeks n then reduced by 5mgs every two weeks to reduce n then stop..this is the usual treatment for me when things flare up again..fast forward 6years n I'm on a maintenance dose for now 10mgs daily but always looking to come off if I can. When I was first given them in the hospital the main side effects was an increase in appetite..insomnia..n very quick changes in mood..in fact I became quite pessimistic n angry!! Not like me at all!! I told the nurse n she said they were all side effects of pred!! Apperently night sweats r a side effect as well n I do get them but I'm also a lady of a certain age so could also be the menopause!!!
I do get very twitchy as well but that is usually when I'm flaring..other times when lupus is under some kind of control..I'm not as twitchy even though I'm still on pred!!
I totally feel for u n understand that you're stressed but it's important that u try to relax because stress drives lupus!!! U gotta treat yourself gently..I find deep breathing with relaxing music helps me when I'm upset n anxious.
It's awful being in the diagnostic wilderness..we all understand what that's like!! But we're a helpful lively bunch when we're up to it n not having tough times ourselves!!
U say you're awaiting a diagnosis so I take it already referred to specialist..try n stay positive as u can..you're heading the right way..it doesn't matter how slowly u go as long as u don't stop!! 💐🤗xx
Hi Krazykat, may I ask about your reaction to flucloxacillin? Were you ever told it was dress syndrome that you had? X
The consultant in A+E told me that I had what he called Stephen Johnson's syndrome..a rare allergic reaction to the flucloxacillin I'd been taking..I had all kinds of medics coming into the little room to have a look..ah..celebrity at last!!! I was seen by dermatologist whilst in hospital n he took a skin biopsy..when the results came back he also said that i had a severe allergic reaction to the flucloxacillin..this was before I got a diagnosis of SCLE..hospital admission was in 2013 n I was diagnosed with lupus in 2017 xx
Sorry to hear that 
I recently spent a month in hospital with Dress syndrome, very similar to sjs and ten. Triggered all sorts of near death reactions and I'm still recovering now. I was told it may trigger other autoimmune illnesses and am waiting to find out whether lupus is one of them x
Oh my u have been through it!! 💐🤗I have asked my dermy if he now thinks that I had lupus then n it was actually the worst of my many skin issues..but he doesn't agree..he still thinks it was the antibiotics!! Thing is I never went to the docs before..I had only had antibiotics when I was a child..as I grew up I stayed away from doctors surgeries n hospitals as much as poss..apart from having my children..I had no medical records to speak of!!
I'm sorry but I have no idea what Dress syndrome is..but at least you're docs r on the alert for lupus xx
Not many people have heard of dress syndrome, most of the docs in hospital had to Google it! Haha. Have a look as flucloxacillin is one of the main meds to trigger it. My skin all came off too, from everywhere! I reacted to carbamazepine after starting it for trigeminal neuralgia. Luckily I have a great team of specialists who are working to get me back to "normal" 😜
I hope you are keeping well now x
You are having such a hard time. I know they are looking at rheumatologic conditions. You did mention allergic reactions. You might want to ask your doctor about mast cell activation disorder. This is another very hard to diagnose disease that can co-exist with autoimmune disease. Because the understanding is so new, there are not many experts and few labs to do the testing.
Do you have reactions to heat, pressure, vibrations, chemicals or food?
Just a thought.
K
Just re-read your posts. I noticed you have pretty severe GI symptoms with weight loss. You are having trouble digesting food. You have angioedema. I have no medical training. But I was sent to a mast cell specialist because of symptoms that looked like MCAD. Very happy I saw an expert. He determined my symptoms are from autonomic function from my autoimmune disease. The nerves and mast cells talk to each other. You said you are twitching. These problems can look a lot alike.
You have already seen a rheumatologist. If I were having your symptoms, I would see an immunologist next. They know autoimmune diseases too, so maybe an immunologist could shed some light on the hypersensitivity aspect you describe and still repeat lupus studies.
K
Theodora, that sounds like a very hard time you are in right now. So sorry to know that when you go for help, it's not much help.
I just want to pop in an add to Kay's brilliant thought about Mast Cell Activation Disorder. It is believed that I have something wrong with my mast cells and my last symptom before treatment was all over body twitching like you are reporting. Mast cell activation treatment was started by a young Dermatologist after a rash biopsy that had a unique profile. He wanted me on a higher dose of Hydroxychloroquine (but my weight was 52kg and can't support more then 200mg -- so you would be in the same category, I presume). He also put me on Montelukast and double to quadruple dose antihistamines daily to steady the mast cells. My Rheumatologist was well impressed by this diagnosis and over the past year my rashes have decreased significantly -- to none since Jan and that one was very small. I would say it took 6 months, but it is working for that part of what is wrong with me. Lisalou's comment about the swelling indicating allergic reaction could be a pointer as well. And we will all present a little differently.
So I just wanted to add a Dermatologist is also a great idea if you can't get an immunologist where you are. There are none even remotely near me. I was surprised and amazed that the Dermatologist was so excellent. They deal well beyond skin level. And as Kay says, Mast Cell Activation Disorder is very new (only brought into the books about 10 years ago), so it might merit a mention if you find the consultant seems stumped. If a referral to Immunology or Dermatology takes ages, are you able to consider a private one-off consultation?
All the very best with all of this.
Panda x
Yes, the dermatologist I was sent to who specializes in allergic conditions was very helpful. He knew by a photo that my rashes were not related to my autoimmune disease, and he had MCAD as a possibility. I completely agree that a visit to the dermatologist would be very valuable. The « true » reactions have to be sorted out too. Many complicated presentations need the input of multiple specialists.
Kx
Feeling lost can anyone help? 
Mums birthday tomorrow feeling lost 
lost my little ray of sunshine
Feeling Lost
Help I think I've lost my mind!
