I had a further Dermatology appointment on Tuesday. As some of you will know I have SCLE, (DLE & SLE symptoms) diagnosed in 2013 with a positive ANA and Anti-RO blood test, plus many symptoms but no internal organ involvement. I have been struggling with increasing symptoms and flares getting closer together for a while, to the point where I am working out my notice at work. My Rheumatologist doesn't seem to know what to do with me and has only ever prescribed the hydroxy at 400mg a day. I have a relatively new Dermy who can see how much I am struggling and wants to help. He gave me info on 2 immune suppressants at my last appt. At this one, he asked how I was and I told him about my feet not liking sandals, skin gets very dry and very itchy, I have spots/boils on my face and the diarrhoea I had had for 4 days. Sun/heat induced I think. He said that I am a difficult case, (not for the first time). As my bloods are all normal, except for the CRP at 6. But that's not a big problem. So bloods don't tell the story for me. He wants me to go onto steroids at 20mg prednisolone for 2 weeks and then taper 5mg per week for another 3 weeks. So 5 weeks in total? I think that's right. So, he says if I feel better on the steroids then that shows that my symptoms are Lupus and he can justify putting me on the immune suppressants. But if they don't help, we'll have to look at this an another angle. I can see his reasoning. Makes sense to me. I have never taken steroids like this before. Only ever 2 x short 5 day course before I was diagnosed to clear up a rash on my arms that turned out to be a sun sensitive rash. So, I guess I am hoping that the steroids work and make me feel good. Might be good with the hot summer weather here, which is so draining for me. Otherwise I'm not sure how I'll feel or what I'll do. He explained how you cannot take steroids long term. That immune suppressants are the better option long term etc. I understand all of that. I also know that the hydroxy isn't enough for me. It's scary. But I am grateful for his belief in me and for his wanting to help. Strange what we wish for sometimes isn't it. Anyone else taken this approach, to see if their symptoms are Lupus? Any tips for taking the steroids.
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