Hi, I am currently on what looks like a Lupus journey after being diagnosed with microvascular angina in 2022 because of my tiredness and breathlessness which seemed to have no other cause.In January 2024 I developed a rash around my mouth which made me look like the joker, with mouth ulcers.
I was sent for a consultation and we discussed me suffering from Reynaud's disease with other rashes on my body and water blisters leading to rashes on my hands. I've been sent for a microscopy exam on my finger capillaries to confirm the Reynaud's and a maxillofacial appointment for a biopsy. So, despite the consultant saying it's not classic lupus, I believe it may be a variant.
I went into remission in July but it all came back last month.
So I'm back to waiting for a diagnosis, even though I've been told that it will just be a matter of managing symptoms from now on. This is better said than done when I am a school teacher who uses their voice all the time and find myself salivating a lot.
I've tried alternative medication of DHEA 50mg and Omega 3 tablets as suggested online and I believe this helped me stay clear from July to December and I'll keep up the medication until I get a follow up review with my consultant.
It is debilitating in not being able to drink hot drinks, drink alcohol or eat spicy/salty foods. Also, as I snore, I am unable to use my mandibular advancement device due to my mouth ulcers, so my wife has to sleep separately to avoid my snoring.
I am here to get as much advice to prepare me for what looks like a life-changing/life long debilitating condition.