I thought I'd post an update on how my appointment went at the Connective Tissue Clinic. I'm a bit all over the place so forgive me if this appears a bit disjointed. :hehe:
First of all I have to say that I feel things have taken a downturn greatly over the last couple of weeks. The muscle pain is all over and constant and the fatigue is killing me. For the first time yesterday I broke down as I just couldn't take it any more. The Naproxen isn't cutting it and I feel I need pain relief instead.
On to the appointment - I got to see the top man who is well published in SLE. Hubby came with me as I had got myself quite worked up about it which showed in my blood pressure!
The Consultant set the scene by saying that he would start from the top of my body and ask me related questions while working down, if I felt he'd missed anything then I could tell him once he'd finished.....I'm liking him already. He was extremely thorough and I knew the questions he asked were to find out if I had symptoms of CNS or Nephritis etc.
We discussed the MMF (Cellcept) drug trial at St. Thomas in great detail and he said that he would not stand in my way if I wanted to try it again even just for a few months to stabilise me! I was utterly gobsmacked as in my head I was willing to accept a short dose of Pred and hopeful that he'd consider the Cellcept in the future. He suprised me by saying he wouldn't consider Pred as I'm young, it would bloat me and long term wouldn't be a good idea.
The only concern he had with the Cellcept was if we wanted to have a family and we discussed our reasons for chosing not to have children. He wanted to make sure it wasn't because of the Lupus and offered us a huge amount of support if we were considering it. By now he's scoring big points with me. :lol:
Hubby asked the doctor questions about the side effects of the Cellcept which I answered and the doc just nodded and said 'Yup, she's right'. I must learn to think before I speak but it was funny.
I almost lost it :tears: when Hubby said 'the person sitting in front of you is not the person I knew 6 months ago that was active, positive, healthy and happy'. Bless him :kiss:
So the upshot is that he wrote a letter to my GP to start me on 500mg of Cellcept when I'm ready and to monitor my bloods. He suggested we go away and talk about it a bit more. I've also got a script for Co-codamol and will stop the Naproxen.
I felt the appointment was very relaxed and the main thing is that he listened! All in all we were in for 40 minutes and I go back in June. His belief is that if a patient is well informed and takes a certain amount of responsibility for their condition then it can be managed better as they get to know how their body is reacting. By now I want to marry him. :rotfl: He also mentioned a few websites (Lupus Foundation of America and Lupus UK) and support groups like this one.
There are 2 things that are significant to me:
1. Although it is likely I had the MMF during the St. Thomas we still don't know for sure but he's willing to give it a shot.
2. Normally Cellcept is for patients with kidney involvement but he was still willing to try it. The alternative he mentioned was Azathioprine.
I'm nervous and happy (and sore) all at the same time. What have I got to lose? Thanks for reading - I didn't mean it to be so long.