I had my appt yesterday to discuss how well the steroids worked and start my Mycophenalate Mofetil.
I was disappointed to see that my Knight was not in clinic - it was written on the board to greet me. My stomach sank. I ended up seeing the Prof who I wasn't at all impressed with back in September last year. Anyway, he asked had the steroids had any effect on me at all and to which I replied, a huge positive effect and gave him the details. No fatigue, no naps needed, no headaches, no aches, no pains, no diarrhoea, no skin problems, great hair, skin and nails and I was happy. He asked which immune suppressant I wanted to start I said Mycophenalate and he said fine. He couldn't find the dosage in his books and I gave him the info my Knight had given me at the last appt. He ended up prescribing 1g a day and told me to come back to see my Knight in mid August - before I go on holiday for 2 weeks and my Knight leave the NHS Trust where I see him. He said you aren't on the hydroxy as well are you? To which I said yes. And how long have you been on that, he asks? Since November 2013, to which he looks puzzled. He asked me how long we intended to be on this for? How am I supposed to answer that?
What am I going to do without my Knight? Prof said my Knight might increase my dosage. But I couldn't tell he really had no idea what to do with me. He even said, it's not for me to question why he is prescribing you this......I thought there might be a "but", but he kept quiet. He asked me exactly what inflammation I had and pointed out my bloods done on 1 July were all OK. I asked him about whether my Rheumy had told them about the results of my MRI and he found the letter and said yes, Syrinx Cyst - that was it.
I asked him if the Mycophenalate would have a similar effect to the steroids and he said "well it's to reduce inflammation". I asked if it would give me more energy, which the steroids had done and made me fell human again and he said, no they wont help that and they wont make you euphoric - like the steroids have! Cheeky git.
Anyway, all complete lack of knowledge of lupus and the meds aside, I walked away with a prescription for 3 weeks and I am seeing my Knight on 9th August - I phoned this afternoon to check myself. So I am happy for now but I am worried that when my Knight leaves, this man will be looking after me and he appears to have no idea - what if he takes me off the immune suppressant and only relies on bloods???? What am I going to do? Afraid already. I need to get my kNight to write a very thorough handover and treatment plan, at the very least.
Taken 2 tablets so far - 500mg last night and 500mg this morning. Fingers crossed!!!!!