Yesterday was my clinic appointment with my rheumy Dr. Fortin. I haven’t seen him since July. I guess that’s a good thing, since there had been times when I had to see him every month…even every couple of weeks. Thankfully, those days are over.

When I got to the appointment, I was (inevidably) accosted by a nice lady requesting my particpation in a study. All these studies are beginning to sound the same time. It had something to do with studying the genes in people with lupus vesus the genes of those without. Usually I’ll say ok and participate, just as long as my participation doesn’t extend past that particular hospital visit.

I recall when I was training for home dialysis, one lady wanted me to participate in a study. I would randomly be put in a group of people who would either dialyze 3 times a week for 4 hours (which I was already doing in-centre anyways…) or 6 times a week for 8 hours each time. I wasn’t sure that I was happy with either arrangement. Aside from regaining my freedom, I decided to reap the benefits of nocturnal dialysis so that I could be healthier and be dialyzed MORE not the same as before. For the 4 hour arrangement, I’d have to dialyze during the day or just before bed otherwise I’d have to wake up in the middle of the night to disconnect myself. Then, 6 days might be too much for me, especially right in the beginning.

For the study, I would also have to come into the hospital to do all kinds of extra tests, such as ultrasounds, ct scans, etc. I listened to her talk and took a couple of days to think about it, but I ultimately said no. She said that I would be put in either the 3 day dialyze or 6 day dia;yze group at first, but it could be changed afterwards. I still declined. She continued to discuss the benefits. I continued to decline. I hate being pressured to do stuff.

Anyhow, the study previously in question (prior to the above tangent) only required bloodwork and the completion of a short questionnaire, so I did it.

When I went in to see Dr. Fortin, we chatted briefly and went through the whole routine. My blood pressure was a bit low: 98/67 or something like that. Odd. I didn’t feel thirsty or anything. Oh well. We discussed my never changing dose of prednisone. He asked me what I thought about my dose and I told him that I wanted to do whatever he thought was right. He chuckled 🙂

After some thought, he decided that we should very slowly come down on my prednisone. He dropped me from 10mg to 9mg. I’m ok with that. I’ve been on 10mg for what seems like ages. Any step in what I feel is the right direction is a-ok with me. I would like to do all that I can to avoid a flare, but I also don’t think the answer is to be on 10mg of prednisone for ever.

I’m happy to be a 9mg. My next appointment with Doc Fortin will be in March. Hopefully if I remain flare free we can take that step to 8mg.


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