As I switched to my third rheumatologist (“Dr. C”) last month, I stopped taking the prednisone that the second one (“Dr. B”) had prescribed for me. Why would I stop taking it when I know that it’s going to cause my symptoms to worsen?
Because I don’t want to cover things up.
Prednisone is not a long-term solution in my mind. The long-term use of steroids is not the best for our bodies and I’d like to try to avoid it if at all possible. The reason I agreed to go on it was because it was given the same time as I started the hydroxychloroquine the second time and the logic was “let’s see if the steroid can knock your symptoms down long enough for the other meds to start working since they take 4-6 months to work.” It was meant to be a blast to get things under control and then be able to treat.
I’m familiar with this method – my orthopedist did it while I was in college. He tried to take care of the symptoms (pain) in my knees to give the treatment we were trying a chance to work. It didn’t work then and I ended up having surgeries on both my knees, but I understood the theory of trying it then and I still get it now, so I agreed to go on the prednisone (and it was a low dose, which made me feel better).
That was in April. I weaned off of it after about 3 months and my pain and stiffness came back with a vengeance (it hadn’t vanished while on it, but it had become more manageable). Dr. B told me to go back on it. That was in July.
I went to Dr. C for my first consult in mid-October. He thoroughly went through all of my symptoms, ran extensive blood tests and X-rays and I was to come back in about 3 weeks to go over the results. (I described how that went here).
But after that initial consult with Dr. C I began to wonder just exactly how bad things are – without prednisone covering things up. If I have something covering it up, how will I know how it’s progressing? How will I know if I’m getting worse, staying the same or (don’t I wish!) having less severe symptoms?
So I stopped taking it. (I was on the lowest dose, so no need to wean off).
It may seem crazy (especially with all the talking I’ve done about how constant pain every day is a drain on me mentally, physically and emotionally), that I’d want to stop taking something that helps – even if it only helps a little.
But I want to know if I’m still hurting.
That’s very different than saying I want to hurt. I don’t want to hurt. I desperately want it to go away. But only if the cause of it goes away.
I don’t want to be masking something that is getting worse, or that is causing concerns for other parts of my body that is being hidden and going undetected.
Pain is one of the ways that the body says “something is going on that isn’t great here and you should probably pay attention to it!” It’s part of the body’s warning system that you need to do something to take care of some problem. Covering up my pain and symptoms would be like turning off the smoke detectors and then getting upset that they didn’t warn you that the house was burning down.
For instance, my neuropathy (that I first talked about here) has been present for a couple of years, worsening in the last 6 months or so. But until I went off the prednisone last month I wasn’t aware of just how bad it had gotten. It has actually taken me quite by surprise how bad it is now and that’s part of what scares me so much: (1) the fact that I can get that much worse that quickly and (2) the fact that I could be covering up other things that are deteriorating rapidly and I wouldn’t know they were going on if I was covering them up.
Another reason that I don’t like to cover things up is because I want to know they were really happening. That they weren’t some figment of my imagination. See, this disease takes and average of 5 years to be diagnosed. I think a large part of that is because the symptoms are seemingly so disconnected. I would have never connected my dry eyes that I complained to my opthamologist about, with the fatigue that I complained to my doctor about, with the dry mouth that I never really complained to anyone about – I just dealt with it, and I never would have put all those things together with the numbness and loss of fine motor control, and especially not with the brain fog! The manifestations are seemingly random. However they aren’t – they’re all a part of this autoimmune disease.
The flip side of finally getting diagnosed is that you’ve seen just how random things can be related. It turns you into someone that watches like a hawk for every seemingly random symptom that you have going on. Because no one put the pieces together for so many years, now you want to make sure that ALL the pieces are put together and nothing else that seems random falls through the cracks. This makes you want to be aware of everything that’s going on with you – if you cover things up you might miss it and not know that it’s another piece of the puzzle! (And it can lead to other problems – like doctors blowing off what you say to them because they think you’re a hypochondriac for bringing up every little thing to them when really you’re just trying to make sure no more seemingly random pieces are left out!)
I don’t want the pain, fatigue, neuropathy and other problems as a constant part of my life. But I do want to be able to take an inventory of everything each day just to see where things stand.
I want to be able to flip a switch to my “actual” self and feel everything – figure out how I feel and what’s going on that day – and then flip the switch off to my “feel great” self and go about my day without having to deal with it all.