LUPUS UK

Possibly Lupus

Hello I'm new I think. That is, I'm not sure if I have lupus and I'm very upset today and I need help and advice if possible. I am 99.9% sure I have lupus.

I have a bad rash spots cysts and redness on my cheeks and now on my chin. My nose has swollen to twice it's size before and I have sores in my nose and down my throat. I have a huge lump under my chin in my throat and every morning my bottom lip swells. I have chipmunk cheeks and a double chin but - I look overweight on my face but i am probably underweight . 2 years ago my face got unbearable with the rash and cysts and scabs. It was hot and really painful and burning itching. Doctor said I had rosacea and put me on antibiotic 2 years. About 2 months ago I had bad pain in my stomach and I stopped the antibiotic. I then got really ill had chest infection but my stomach or what felt like stomach hurts as well and I was sure I had stomach problem so didn't carry on with antibiotics .

I started to Google face rashes and that and thought I had a demodex worms all sorts amd de wormed everyone....but pains inside and headaches and sneezing and all sorts didn't explain it and it never went away. Anyway I found lupus eventually and was dumbstruck at the list of basically my symptoms from rash to reynauds . All of it and more. It took a while to get there but I reckon I'd still be on those antibiotics and being fobbed off for all the other stuff I mentioned to the doc he dismissed over and again.. So off I went to the doctor and he looks worried and that but offers no solution adds blood thinners and that to my tablets and changes antibiotics. I go back and tell him I think I have lupus. He refers me to a dermatologist and doesn't seem convinced at all. But he does blood tests and calls me to say my MCTD screening came back normal but he's referring me to rheumatologist as well. I get copies of blood test. Was hard to interpret but it doesn't look good at all for a woman in her 30s. Why would he record it as normal? There was evidence of MCTD but it was low he says so it is negative. Whether it is low or not it is there so I don't undertand him. He basically isn't bothered and he's done his bit I feel he is very curt with me again. I just figure I have to suffer or take his antibiotic and preserve my face somewhat at what internal expense ?

So today I go dermatologist and it was awful. I took my blood test results with me and he told me I tested negative. I tell him no I did not my blood test is terrible and I don't really understand why they don't share the ANA result with me they just say it is low. It doesn't have a number that makes sense to me. It days Blood Chemistry General 0.1 normal 0-1 but ESR out of range and other things that I have read are significant?

So today they do a biopsy on my face. It will take that long to come back i will see the rheumatologist before then. I will probably be fobbed off then again. Today the dermatologist got me to do another blood test. I find it odd I have had 2 blood tests now and a skin biopsy yet no one has checked my kidneys. I am really upset I feel like they are all playing along with me and testing blood and skin but not testing urine.

Anyway if anyone has any advice I'd be most grateful as I am finding it hard to live with the way I look and having no diagnoses confirmed for what could still be some time

Thanks

13 Replies
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Hello and welcome cocodmer,

Sounds like you have a real struggle on your hands. I think that's pretty usual for a lot of us here - it's like there is no such thing as a simple and straightforward route to diagnosis.

Lots of us spend ages in a kind of no-man's land of having no diagnosis or shifting diagnoses. Have you seen the LupusUK leaflets on the home page here? The one on diagnosis might be especially helpful? Here it is

lupusuk.org.uk/wp-content/u...

In the meantime, don't give up! Keep us updated with how things are going x

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Thank you very much for the link and welcome much appreciated.

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Hi Cocodmer. Sorry that you're having such an awful time of it. As Whisperit says many of us do. For me it all came on suddenly in the form of bilateral joint pain after 45 years (from birth) of severe eczema and alopecia. I did already have autoimmunity in the form of hypothyroidism and was lucky that my bloods were off scales for ESR and CRP and my Rheumatoid Factor was mildly elevated. My ANA wasn't tested during the first year so I don't know what it was up to but eventually, once off all meds, it did show a clear positive.

I have Sjögren's as my primary disease rather than Lupus or RA - but my symptoms span both. The chipmunk look that you describe really makes me think of Sjögren's because sometimes our parotids become enlarged and lymph nodes too. 50% of sufferers are seronegative - showing mildly elevated ANA or Rheumatoid Factor but no ENA antibodies. ENA is the more specific panel of antibody tests for RA, Lupus and Sjögren's plus a few others. This is the panel your dermatologist may have run I'm guessing.

If this is negative and your skin biopsy is too then it is less likely that you have Lupus. But Rosacea is very common for all people with rheumatic diseases. I only learned of it when I was on the RA HU community forum and people kept speaking of it. It can be very serious. In fact I joined a closed FB page for Rosacea because I have it mildly and wanted to learn more about treatments. I was horrified by what many with it endure and it affects some people's eyes (making them red) and noses, necks too. Similarly I looked at an eczema group and was really distressed to see what others have to cope with.

So it is quite possible to have Lupus, RA with Rosacea which flares up when the disease is poorly controlled. If you want to learn more about this overlap then just type in Rosacea in the search box and one of my recent posts should come up. You will see from this that quite a lot of people have both.

I know that waiting for results is exasperating and a worrying time but whenever I've had biopsies the results have been back within a few weeks/ one month and the longer they take the more likely they are to show that something is indicating I believe. At least that's what a professor of dermatology told me.

Re your urine - if you want to get this tested then just take a sample in to your GP or practice nurse and they can test it there and then. Mine was only ever tested at rheumatology clinic and no one mentioned that it showed traces of blood. It was only when my e-GFR (standard renal check as part of a full blood count for a blood pressure drug) dipped dramatically once that I found out when the nurse asked for a pee sample. I don't have kidney disease yet but am on an immunesuppressant for my Sjögren's which was first licenced as an anti rejection drug for kidney transplant patients. It's taken seven years to get to where I am now and many powerful drugs with many severe allergic reactions. So please don't fret about the effects of mild antibiotics on your system - these are sometimes used to combat autoimmune diseases and Lyme disease too. They are far milder than the drugs often used to combat RA, Lupus and others.

Fingers crossed for you that you get some clarity from the biopsy and latest blood results. But if not then please do keep pushing for answers if you feel there's more going on than Rosacea. Mildly elevated bloods are often dismissed by doctors as normal but if you keep an eye on yours you may notice a pattern emerging that supports your instincts about symptoms correlating with bloods.

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Thank you

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This is the unco- ordinated run around we all have - sorry it is quite a shock when you discover it. However - autoimmune problems are so complex and inter linked that it could be any of them or just one. They will get to the bottom of it - it's a slow process so keep pushing. Twitchytoes is very knowledgeable so follow her advice and take that sample in. Try not to worry - it will get resolved - very best of luck and keep us posted.

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Rheumatologists are the specialist who are trained to diagnose and treat lupus so you need to get one to evaluate you. There are many many blood tests they do to determine whether you have lupus and what kind/level and the proper treatment involved. A dermatologist can't fully diagnose or treat systemic lupus or immune disorders so you need to have the rheumatologist do that.

There are quite a few autoimmune disorders that have similar symptoms, but a rheumatologist is trained to deal with all of them. There are many diagnostic test they can order that other doctors will not.

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Hi. Just a very left of field suggestion that is probably of no relevance to you but it might be worth you getting a kidney check. Simple blood and urine test - Any GP can do it.

I've had SLE for 40 years and have found generalist specialists just as good - if not sometimes better than Rheumatologists - at figuring out mystery symptoms.

Doctors must be open with you about what they're thinking. If there's a communication wall going up, take a look at your medical record to make sure they're acting on what you're telling them.

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I am feeling for you here. Sometimes diagnosis is a long hard path. And yet we can feel like we are falling to pieces, with all the debilitating symptoms that we live with and that alter our quality of life. I'm still on my journey to enlightenment (!!) I am considered sero negative. I do have stage 3 CKD amongst other things, which I wasn't told about by my Rheumy. But My Dr said it had been consistent for 2 years, they have basically said not to worry about it as I am not leaking protein, but that I need testing yearly. I tend to agree with you a positive no matter how low is a positive. I am no expert. But we ourselves know better than anyone when something is not right. So persevere, it is easier said then done sometimes I know. There are loads of experienced people on here with good advice that are more qualified to help. Keep on keeping on x

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Hi cocodmer,

I'm sorry to hear that you are struggling to get an explanation for your symptoms. I hope that when you see the rheumatologist they will be more helpful and do a thorough run-down because their specialty is autoimmune and musculoskeletal conditions. If you need any tips on preparing for the rheumatology appointment, you may find our blog article here helpful - lupusuk.org.uk/getting-the-...

If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at lupusuk.org.uk/request-info...

Let us know how you get on with the rheumatology appointment and further test results.

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Thank you everyone for your replies. I am feeling a bit better about the waiting and your advice is most helpful. I am seeing a rheumatologist on 26th so I haven't got long to wait. Face hurts today but I feel more positive certainly reading your comments gives me courage. Have a good weekend xx

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Hello. I wanted to share that I have since had skin biopsy result which was negative for lupus but positive for neutrophila inflammation. I think this is sweets syndrome ? Also I have neutrophila that is high white blood cells. My photosensitivity has got worse so I am having phototesting in December. Yesterday I had mri as a result of rheumatologist appointment who did not and hasn't eliminated lupus but she said she's worried about head involvement so yesterday was head mri. Anyway over the summer hols I have managed to stay out of light and my face has improved enormously. It has however made me more aware of other symptoms like vision problems and also swollen lymph nodes. I am now awaiting appointment for imaging results as I also had x ray and I am.seeing dermatologist couple of weeks. I can't avoid the light anymore as back at work tomorrow. I'm a bit scared but I'm going to keep going in as much and as long as I can. I haven't got a diagnosis and I don't feel I have much choice. Much respect to people who have got through this limbo. It is very tough indeed. I still have no real.idea what is wrong with me. Thanks for reading and any advice x

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Thanks for the update - sorry you still have uncertainty though - it's awful I know. But at least you seem to be getting somewhere with the Sweets diagnosis. I looked it up and it seems to be immune mediated and often associated with an underlying systemic process. If you have swollen lymph nodes and dry, sore eyes I think you should ask your rheum about primary Sjögren's too. Small vessel disease of the brain and photo sensitivity can be related - I have both but mildly so far.

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Thank you for your reply you're are very kind. I am going to ask both derm and rheum about sjorgens I think twitchytoes that your original assessment of sjorgens is right. We shall see what comes of the next 2 respective appointments. One can only be a patient patient :-) and manage underlying condition in meantime whatever it is....

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