I woke up to a multiple joint flare up this morning, and was sort of relieved that I would have something ‘physical’ to show the consultant at my appointment today!
It’s been just over three weeks since my disastrous consultation with Dr ‘Y’, and I still feel fragile about it. So, even though I was looking forward to trying to make progress about changing my disease modifying drugs, I was also really nervous about how today’s consultation might go. On arrival, I was relieved to find that I was actually going to get to see Dr S. Even so, I was pretty nervous while waiting, especially as Dr Y was also working the clinic.
The consultation itself went pretty well. Why all doctors can’t be this sympathetic and reasonable? It didn’t start too well though. Dr S had already received my official complaint about my treatment at the clinic over the years, and the particular consultation three weeks ago. He pointed out to me that it would take a considerable amount of his time to investigate fully and deal with the complaint properly and even then, I probably would not get the outcomes that I desired. Thankfully we didn’t dwell on this too much, and we managed to move on to actually discuss both pain management and a new course of treatment for me.
I’d brought a couple of abstracts of articles detailing the use of antibiotics in the treatment of people with rheumatoid arthritis. Thankfully, unlike Dr ‘Y’, he was not threatened by me bringing in what I’d found, though he did point out (reasonably) that he could not make a decision there and then just on a quick reading of two abstracts. We did discuss it a bit though, and he did recall that on my return from working overseas, I did report fewer flare-ups while abroad and agreed that it was interesting that I had been taking antibiotics at the time. He explained that initially, rheumatoid arthritis was thought to have been caused by an infection and that antibiotic treatment for it was not actually new. Apparently, people with rheumatoid arthritis used to have their teeth removed and their appendixes taken out as a way of treating it!! Thankfully things have moved on from then, even though it’s not really understood all that much more I think!
Anyway, so antibiotic treatment isn’t a new thing at all, but it has never been shown to have a high enough success rate to be a regular treatment. However, it does show greater success with reactive arthritis apparently. Thankfully, he agreed that my case was ‘unusual’ because Palindromic Rheumatism is so little understood and that he could understand my reluctance to move up to Methatraxate if there was another possible route to go down first.
I told him that I was probably in some sort of pain or flare-up about a third of the time and that it was really affecting my quality of life. I know preventing joint-damage is generally the priority for a rheumatologist, but with PR, that’s less likely to happen because of the nature of the condition. So as far as I am concerned, my priorities are just about not being in pain (or exhausted) as much of the time as I am at the moment. Thankfully he listened to this sympathetically. We finished the appointment with him agreeing to go away and read the full papers that I had brought abstracts of, and possibly do a little more research to see what else he could dig up. He promised to get back to me with a decision in a few days.
I finally feel as if I’ve been taken seriously, and almost have a glimmer of hope that there could be something worth trying that could reduce my flare ups. Watch this space.