what can I do to help myself?

[Jen_dog]

hello, I am new here.

I don't have a diagnosis but I have suspected some kind of auto-immune condition for over 4 years, and this year got the 'butterfly rash' and found Lupus on a search engine. Many of the symptoms match, but my initial bloods at the GP are negative and I am no closer to a referral of anykind than I was 6 months ago or 4 years ago.. I'm aware I may have nothing at all, or a similar/overlapping/different AI.

Is there anything I can do to help myself in the meantime? My skin is suffering (itchy, sore, very dry, patches that look like ringworm but aren't), nosebleeds are frequent, my mouth is so dry I am getting frequent small cavities despite good hygiene etc, and I had horrific pneumonia earlier this year that landed me in hospital within days out of nowhere (40, non-smoker, excellent weight etc, no risk factors).

i take vitamin D, a multi-vitamin, have a healthy diet, don't smoke, don't really drink, use moisturisers and mouth gel and a anti-histamine when my skin flares. I also have hydrocortisone cream from the chemist for the gross patches.

Are there any supplements I can take or anything I can do that will help me? I am worried I will get pneumonia again, or what the next illness will be.

Thank you, and sorry for the long message.

[Pippydo]

I think you have to keep badgering your doctor, maybe referral to dermatologist who may do a skin biopsy which may reveal lupus. Very difficult to get a diagnosis if bloods don’t show anything. I had a private referral for skin rash and lupus diagnosed from there but I’ve had other autoimmune diseases for many years. Good luck!

[Jolevans]

Hi, I have seronegative lupus as it doesn’t show up in my blood test. But I did have to go private to get a diagnosis. I went to the Lupus Centre, London bridge hospital.

[Paprika60]

I am very sorry to read your post. To suffer as you do and yet not get any help at all from the specialist...you must feel so helpless, frustrated and alone. If you can afford it, do go and see a dermatologist who also practises in NHS. If you stick with private doctors for everything, it will cost you so much, every blood test, skin biopsy and etc. But if you wait for the GP referral, it may take so long. So the best option is to look for dermatologist with NHS practise on the side. Many do. It is possible that you have Sjogrens as your mouth is so dry and you clearly have some sort of immune system malfunctioning going on. I would go easy on the hydrocortisone cream as it will only thin your skin. It is effective for a short term only and not good in the long run. Google and search for alternative skin creams that may help you, the more natural the better. I would say organic aloe vera gel (99% pure) for dry and itchy skin. I used to put organic oatmeal in a stocking and put it in my bath to help my skin. Your GPs should help you but these days one actually has to get very lucky to have a good, caring GP. Hope you get help soon. And do try not to get too stressed. I know it is hard but stress is the worst thing for your skin condition. Sending healing energy and best wishes!

[StriatedCaracara]

Tests used are not always reliable.

Methods and cut offs can also vary.

Dr Donald Thomas, author of The Lupus Encyclopedia, recently produced a video saying better tests are needed. He gives the example of a young patient who started to lose her sight because tests were not positive and she did not get timely help. Some people develop Lupus nephritis before getting positive bloods.

Establishing which hospitals have rheumatology departments that diagnosis, treat and review patients with Undifferentiated Connective Tissue Disease (UCTD) can help.

I have UCTD and Lupus symptoms - my symptoms some going back over a decade have been successfully treated with hydroxychloroquine and mepacrine, and previously with short courses of steroid.

healthunlocked.com/lupusuk/...

I'm not sure if Seronegative Lupus diagnoses are being made much since the 2019 SLE Classification criteria intended for research only but used by some to diagnose came into being. A score of ten is required and only one symptom and one immunological criteria can be scored. Only lupus nephritis scores 10. The next highest symptom score is 6 eg for joint involvement meaning 4 pounts need to come from positive immunological blood tests.

Too see full table, and symptom column to left, it is necessary to zoom out on this image:

ncbi.nlm.nih.gov/core/lw/2....