New diagnosis

[Quuen]

So I have recently been diagnosed with discoid lupus after a 3 year battle. I feel relieved in a sense to know that I was not going crazy with the symptoms I have been experiencing. My family and friends have been so amazing through it all but I feel slightly disregarded in the sense that we are happy there are no signs of systemic lupus even though i have discoid. I am grateful but cant however shake the awful feeling of trying to come to terms with having lupus in any form, taking new medication and all these new precautions when going out.

Can anyone relate? 😔 and how did you get past this?

[Pangine]

Hello. I am 66 years, very fit and healthy and was diagnosed with Discoid lupus about 6 years ago. My main symptom is a receding hairline. I also have fleeting skin and eye Issues. I was very shocked and terribly frightened when diagnosed. I feared I was going to lose all my hair. My hair had always defined me. Friends and family were not very sympathetic as they had never heard of Lupus and I have a mass of thick curly shoulder length hair. I was put on Hydroxychloroquine initially 200 mgs, rising to 400 mgs and now 200mgs shortly to be taken off as my dermatologist says my Lupus has burnt out. I have never met someone with Lupus. I have met some doctors in dermatology who know less than nothing. It has felt lonely. My rock has been reading this discussion page daily on here and the Lupus UK website. It has helped me gradually get perspective. It has been cathartic. I know there is somewhere to get an answer to even the most stupid question and people that care. Good luck. I feel very lucky I have only got Discoid Lupus, at present.

[Quuen in reply to Pangine]

Thank you for sharing! I really appreciate the advice and support. You've given me hope that my dosage may be lowered at some point possibly too. Im not a big fan of medication but I will take it if it means not suffering!

[Pangine in reply to Quuen]

Just to add I still have a mass of shoulder length curly hair too with a slightly higher hairline. 💃

[MusicalFurbaby]

Hi Quuen, sorry to hear of your diagnosis and all you are going through with that. It’s big news, and involves a lot of physical and mental adjustment. While I can’t relate to having Discoid, I have been diagnosed with SLE, and I can certainly relate to the madness of all the symptoms, medications, precautions and general upheaval that life with autoimmune disease invariably brings. It took me a while to get my head around it, but I have to say, in the end it was a relief to have a label. It gave a name to all the craziness, and validated my lived experience! anyway, sorry to hear you feel disregarded or minimised with your symptoms because there’s no SLE, it’s never nice to have people dismiss how you feel. We are here for you. Please remember you’re not alone. 🌻

[Quuen in reply to MusicalFurbaby]

That really means alot! Thank you❤️

[Cas70]

Dear Quuen - I have the same condition - it just takes time. There are a lot of natural remedies that help ease the symptoms. You will find lots of advice on here - I am treated by a Registered Herbalist too and that really helps. Give yourself time and you do learn to live with it - skin is the biggest organ, but it’s the lesser of the two versions. Good luck.

[Quuen]

Thank you! Do you have any recommendations with anything to start with and how would i go about finding a herbalist?