@Seenie— hi Seenie, I am in the process of trying to find the mix of meds/therapy/doctors care. You mentioned you took a rather aggressive approach to your health. Can you please share with me what you did to jump start your healing? I’m really trying to fix things that have gone untreated for too long. Thanks so much and Happy 2018!!
Happy New Year!
I thought that this topic deserved its own thread, so I hope that you don’t mind my moving your post.
For me, it started with finding a rheumatologist who was very expert in PsA. My first rheumatologist, although she was a lovely woman, really didn’t have much of a clue. She assessed me as having mild disease not warranting aggressive treatment. I believed her: she was, after all, the rheumie, and I wasn’t. That’s where this support group played a major role: the people here, mainly @tntlamb, convinced me to get a second opinion. And that was the great turning point that changed the course of my disease and gave me my life back.
In my opinion, until you have an accurate assessment of the state of your disease, you’re just groping around in the dark. I was fortunate in being able to access top drawer PsA-specific expertise reasonably close to home: OK, five hours of driving and an overnight in a hotel and a five hour drive back isn’t that close but in terms of what it did for me, it was worth the time and the money. Those disease experts assessed me as having severe disease with a lot of damage, and they started me on aggressive biologic therapy posthaste.
Because that aggressive treatment got me feeling so much better so quickly, I was able to engage a physiotherapist who started me on an exercise program that I do quite religiously. (I fell off the wagon in December, but that’s going to change soon.) I’ve thought about a personal trainer, but I’m not sure my old brain and my lifestyle would adapt to that. Besides, I would be looking for someone familiar with the issues I have connected with my disease.
I also saw a dietitian, but she interviewed me and decided I was fine on my own. Dietary changes that I’ve made on my own haven’t made all that much difference to me, with the exception of a restricted carbohydrate diet. I do feel better when I keep my carbs fairly low (and I’m not saying that I manage that enough of the time).
That turning point also taught me that unless I advocate for myself, and find my own experts, it probably isn’t going to happen. If I had a heart problem, or cancer, or some other acute and life-threatening condition, I would find myself in the hands of top specialists without asking. Unfortunately, that’s not the case with most chronic diseases. PsA doesn’t threaten your life in the short run: it just destroys your quality of life each and every day. For us who have been “gifted” with PsA, that, unfortunately is the reality.
I think one of the challenges that you are going to face is that you live in a place where getting a very specialized rheumatologist is probably going to be difficult. You might want to consider approaching it through the back door. Have you managed to find a dermatologist in whom you have confidence? They might be able to help you find the rheumatology expertise that you need. On the other hand, is a trip to the mainland a possibility?
I see you’ve been on a couple of biologics already. What, and where, has your experience with rheumatologists been?
3 Likes