Yesterday I went to Guy's, which I thought was for a lupus consultation but which turned out to be the normal rheumatology clinic (although my appointment note said rheumatology/lupus clinic on it). My GP, who is a qualified dermatologist, wanted an opinion from the lupus people on my worsening facial rash. I saw an excellent doctor, who also works at the lupus clinic at the St Thomas site. I have autoimmune hepatitis, and have been diagnosed with lupus/Sjogren's overlap by my local rheumatologist. The doctor at Guy's told me she doesn't think I have lupus, but a generalised autoimmune condition. She sent me for blood tests for just about everything, and gave me a referral to the lupus clinic to see the dermatologists, as she would also like their opinion. This referral is for December.
In the meantime my GP, the qualified dermatologist, has put me on antibiotics for FOUR months, and told me to continue putting the tacrolimus (Protopic ointment) prescribed by the local rheumatologist every other day. My skin continues to worsen, is red, angry and hot, my face is swollen and pricks all over and at night I feel like tearing my skin off. My eyes are permanently red and are becoming swollen. My GP says I have rosacea and "other things", and has also prescribed simple eye ointment for my eyes, to be put in each night. He wants to see me in 2 months.
So, next GP appointment: 2 months. Lupus clinic appointment to see dermatologist: 7 months. Skin: rapidly worsening and extremely uncomfortable. Current diagnosis: apart from autoimmune hepatitis, somewhat uncertain now. Other symptoms which have gone into abeyance since being put on plaquenil: extreme fatigue, dramatic hair loss. Current symptoms: costocondritis (spelling?), worsening facial rash, pain behind one eye and in the temple, general stiffness (could be old age), tingling at ends of fingers off and on and very cold hands most of the time, tingling round my lips, occasional fibrillation, indigestion, sleep disturbance.
Sorry to be so long-winded but I am feeling in limbo at the moment and if anyone has any suggestions as to how to speed up things with my skin problem or if they have the same symptoms and different or same diagnosis I would love to hear from you.
Sorry that you are having so much bother with your skin.
There were a couple of things that stood out for me about your symptoms, the tingling around your lips and temple and eye pain. Do you have any visual disturbances with the eye pain? If you haven't mentioned these symptoms to your GP it might be worth doing so. There is a type of vasculitis associated with temple pain, visual disturbances and generalised stiffness/ pain which needs to be treated quickly with high dose steroids.
I hope I haven't worried you and my apologies if these symptoms are longstanding or have been investigated.
So given the symptoms and lack of clarity of diagnosis, why haven't your doctors start you on a course of steroids to see if symptoms (including the rash) stabilise? I don't understand this - if they agree you've got an autoimmune condition, why not make your life better by using a tried and tested drug such as steroids to, at least for a short period, attempt to control it?! Have you asked for steroids yourself?
And by the way, I also have left temple pain extending behind the left eye, with sensitivity around lips and sometimes tongue in that side. All tests I've done re giant cell arthritis, optic neuritis, optic shingles, Bell's palsy, etc came up normal. The neurologist concluded that it is a migraineous headache (never heard of this term before) connected to the lupus. So each time I start feeling this I rush to take 1g paracetamol which improves it slightly but doesn't get rid of it. Amazingly, when I'm on steroids for a flare, these symptoms do not occur.
That's really interesting. I take atenolol for migraine which was diagnosed about 15 years ago, but this temple/eye pain seems different and anyway the atenolol should be controlling it. No tongue symptoms so far. But so many autoimmune disorders seem to overlap, the consultant at Guy's was probably right to say I had generalised autoimmune disorder. It's basically autoimmune meltdown.
Well, when I was in hospital with jaundice and liver readings off the scale and they found out it was autoimmune hepatitis (very nasty, to be avoided) they put me on maximum dose presdnisolone and I felt as if I was in deep space 9, so they tailed it off and put me on presdnisolone, which sent my white cell count and platelet count into a tailspin, so they swapped me to mercaptopurine which is managing things well. My liver readings are currently normal, which is amazing. The headache went away at that point, but has recently come back. The tingling lips is a new symptom. My GP said he could put me on steroids for my skin problem and that it would solve things more quickly, but that putting me on antibiotics for 4 months was better in the long run. They seem to be special stomach-dissolving antibiotics, by the way (erythromycin, horrible). I'd rather avoid steroids if I can, to be honest, I was quite unhinged when i took them before and was awake all night madly doing research on the internet into anything and everything. But I shall ask again about these symptoms, especially as the tingling lips one is new, and see what they say. Thank you.
Oops, sent the reply below via the wrong reply P, it was meant for you! Here it is again as you probably didn't see it.
Well, when I was in hospital with jaundice and liver readings off the scale and they found out it was autoimmune hepatitis (very nasty, to be avoided) they put me on maximum dose presdnisolone and I felt as if I was in deep space 9, so they tailed it off and put me on presdnisolone, which sent my white cell count and platelet count into a tailspin, so they swapped me to mercaptopurine which is managing things well. My liver readings are currently normal, which is amazing. The headache went away at that point, but has recently come back. The tingling lips is a new symptom. My GP said he could put me on steroids for my skin problem and that it would solve things more quickly, but that putting me on antibiotics for 4 months was better in the long run. They seem to be special stomach-dissolving antibiotics, by the way (erythromycin, horrible). I'd rather avoid steroids if I can, to be honest, I was quite unhinged when i took them before and was awake all night madly doing research on the internet into anything and everything. But I shall ask again about these symptoms, especially as the tingling lips one is new, and see what they say. Thank you.
Antibiotics throw me into a flare, so I try to avoid them if I can. I agree with your view on steroids, though sometimes a short course can make a difference to quality of life without too much detriment. But I don't understand your dermatologist's view - antibiotics would only work if your rash is caused by some kind of infective agent. Steroids are not used to treat infection, so I don't understand why he believes that he could use them interchangeably and that antibiotics would be better than steroids in the long run. It doesn't make sense to me but what do I know.
Going back to the tingling - just because my tests came up showing nothing and the neurologist put it down to migraine, it doesn't mean that (a) the tests are conclusive; (b) the neurologist was right; (c) you have the same as I. So I'd keep an eye on the tingling and see what improves it, if anything. I found that mine goes away after few days. I'm actually experiencing some of that and left temple headache now (with some sensitivity around my eye lid too, like there something on my eyelashes).
This disease must be one of the weirdest there is out there!
Autoimmune disorders are indeed weird, which is why, I suppose, they are so difficult to diagnose.
That's really interesting Purpletop. I don't have a diagnosis apart from " auto immune illness ". My worst symptoms are headache, blurry vision and jaw/ facial pain alongside myalgia, arthralgia, fatigue, anemia, weight loss etc.
I was on high dose steroids, now down to 8mg. My symptoms did respond to Methotrexate, but it wore off after 5 days. Now on mycophenolate for past 4 weeks.
Have recently developed an intermitent facial rash, waiting on dermatology appt.
My ANA and anti DSNA are equivocal, C3 complement is low.
The really annoying thing is that no one that I have seen is willing to accept that all my symptoms are linked, they think the headache, blurry vision and facial pain aren't connected to the auto immune stuff. Have had a few second opinions and keep on bouncing around Max Fax, opthamology etc who only look at their own " bit ".
It's reassuring to know that I am not alone in a multiplicity of symptoms that medics struggle to explain!
Let's hope that the mycophenolate kicks in soon and these symptoms start dying down one by one. Is your blurry vision permanent or on/off? When I have these temple pain episodes my left eye has like a film over it, I describe it as if a lens is dirty. The neurologist was sure I have optic neuritis until I had brain MRI and visual evoked potential tests that didn't confirm it.
The problem is that most doctors focus on tests rather than the patient. The moment the tests results show nothing wrong, then their interest fades and they do not take further steps to get to the bottom of the symptoms that prompted the test in the first place.
The blurry vision is present most of the time although some days it is worse than others. Optho say there is nothing wrong with my eyes and have blamed it on high dose pred. I have only seen a neurologist for 5 mins when I was admitted to hospital a year ago when these symptoms appeared. The jaw pain was so bad I lost 8lbs in a few days as I couldn't eat. I have no steroid related weight gain due to the ongoing pain.
My Rheumy has been good as he has tried to treat my symptoms, I just find it upsetting that they can't look at my symptoms as a whole.
You are right there is an overeliance on diagnostic tests, unfortunately not many clinicians are prepared to take that leap of faith and diagnose on symptoms.
Hello again Keyes. This all sounds SO familiar. My symptoms started years ago with my "migraines", then I developed atrial fibrillation, was blue lighted in to hospital where they found coincidentally that I had abnormal liver readings, tested for viral hepatitis but that came back normal so they didn't pursue it, then I had an ablation for the fibrillation but the operation went wrong, the surgeon pierced my heart and I got cardiac tamponnade and nearly died, had emergency open heart surgery and survived. While recovering I had a small pleural effusion which they said they weren't worried about, terrible costochondral pain which they said would go away, went back to work and felt absolutely terrible for 3 months and developed jaundice and ended up in hospital again In hospital they diagnosed autoimmune hepatitis after a liver biopsy. I had kept going to the GP saying I knew something was wrong with me for 3 months before this, but they thought is was just having to recover from the heart surgery, sternotomy etc. They sent me to ENT for suspected sinusitis, to the diagnostic centre for the pain in my chest, to the cardiac people for extreme indigestion, which was so bad i couldn't even get to the phone to dial 999, to the ophthalmologist for my eye problems and they all said there was nothing wrong with me. My hepatologist suspected a connective tissue disorder when I told him my symptoms, so sent me to the rheumatologist who diagnosed lupus/Sjogren's overlap and put me on hyroxychloroquine (I am already on mercaptopurine, an immunosuppressant). Now the second rheumatologist I saw mistakenly when I was supposed to be at the lupus dermatologist says I don't have SLE/Sjogren's after all. I have to say I am very relieved about this. Now my confidence in my first rheumatologist has been undermined - did he really make a misdiagnosis? - and I don't know whether I should keep going to see him, or swap to the one at Guy's, and I still have no idea how or when my skin issue is going to be treated. The problem is, none of them seems to communicate. They just look at discrete bits of you and what I need is a holistic diagnosis.
Sorry to keep going on, I just feel helpless at the moment and ground down by it all. This site is a good sounding board. Thank you for bothering to read this rant.
No, I started the immunosuppressants after the autoimmune hepatitis diagnosis. But I have started getting the odd flutter again recently, but the cardiothoracic surgeon inserted an atrial appendage during the emergency surgery (he was very proud of this) and said he has increased my life expectancy greatly as I am no longer at risk of stroke. So that's good.
in reply to
Hi Bitternwatcher,
You really have been through the mill and very lucky to have survived a cardiac tamponade.
I work in the NHS, I think part of the problem is that everyone is a hyper specialist now. My GP says she feels like a centre half, feeding the ball out to the different specialities who don't communicate with each other. The way forward is definitely multi disciplinary clinics, there are a few up and down the country for vasculitis and they work very well.
I am not surprised you feel helpless and ground down by it all. All any of us want is to know what is wrong ( diagnosis ) and what can be used to treat it effectively. Living with uncertainty is exhausting, as if our symptoms weren't bad enough!
I do sympathise with you and understand how you feel as I have been there myself, many times, I ended up in hospital when my skin was in such a mess there was hardly a patch of "normal" skin on my body. I had photographers and doctors galore looking at me, I am under the care of the Guys dermatology team now and the Lupus clinic at St Thomas' and between them they have worked wonders my skin is almost clear!! So don't give up hope it took a while but they are a great team between the two hospitals, my hair is even growing back after being bald for four years too. I too use Protopic but I use it for three days then a steroid cream for three days, which steroid cream depends on the rash and part of the body. I also never use soap I use a soap substitute that I have on prescription. I have got rid of all low energy lighting and flourescent lighting in my house as it was making me worse as I am photosensitive. I cover up when I am outside, I wear gloves, scarf, and something on my head all year and fabrics thick enough to block UV rays, yes in the hot weather it is like having a personal sauna whilst walking about but it has to be done to stay healthy.
Good luck and persevere, write down any questions you have before you go and then take them with you so you don't forget them
Thank you so much for this M. From what you say I think it is best for me to continue going to rheumatology at Guy's (I was very impressed with the doctor who saw me) instead of going locally, especially as the rheumatologist is a lupus specialist and is able to refer me to the dermatology specialists at the lupus clinic at St Thomas'. I'll just have to hang on until my appointment in December, and my GP might come up with an idea to improve my skin symptoms in the meantime.
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I too use Protopic but I use it for three days then a steroid cream for three days, which steroid cream depends on the rash and part of the body. I also never use soap I use a soap substitute that I have on prescription. I have got rid of all low energy lighting and flourescent lighting in my house as it was making me worse as I am photosensitive. I cover up when I am outside, I wear gloves, scarf, and something on my head all year and fabrics thick enough to block UV rays, yes in the hot weather it is like having a personal sauna whilst walking about but it has to be done to stay healthy. 
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