Guidance needed!

[Apple86]

Hi there, I was diagnosed in December last year with subacute cutainious Lupus Erythematosus, and Urticarial vasculitis. I was prescribed Hydroxychloroquin which seemed to make my symptoms worse and so stopped taking them. I was given a steroid injection to help with joint pain and sever fatigue which initially worked but now has very little effect on my symptoms. I have been waiting for an appointment to see a rheumatologist for 6 months and my consultant said they may be able to prescribe something different for my symptoms but I'm just wondering if anyone knows what this could be and why it can't be prescribed by my consultant. My symptoms really seemed to have stumped her as she said they do not follow the 'normal' pattern of Lupus flares. I feel so ill all the time, and honestly feel like I'm losing my mental capacity when I forget my words, or what I am talking about, or what I had for tea last night! I fear this could be more than Lupus but not sure where to go with my worries as no-one seems to have any answers for me

[Minimum]

Hi Apple, I know how you feel but try not to worry about it too much you must remember a lot of us have the same symptoms and your not losing your mind it's the illness and we have good times and bad, when I felt my local consultant wasn't helping me I asked for a second opinion and it was the best thing I did. And ask if you can have another steroid I have a friend who has it every 6 months.

I now have to go as my fingers are trying to type something as I'm tired, see it's not just you. Good luck.

Minimum x

[maggielee]

Hi I have SCLE & sjogrens etc etc. To bad about hydroxy as it help my rash & aches & pains but things did get worse for me in a couple of years & I also take mycophenolate & thats helps calm things down...

Hopefully, you are avoiding uv? It is something that hard to measure our level of intolerance & can play havoc with our skin & how we feel.... Hopefully meds can help... I still cover-up & use 50 factor...

Best of luck with doctors...long time to wait for rheumy...hope it comes soon....ml