I tapered down to 2 1/2 pills and it has gone well. Well, okay, the day isn't even over yet, but I haven't had to drink pickle juice either. So far so good. I feel optimistic.
Although I did forget to eat and I think I might be a little loopier than I realize, based on how hard it's been for me to get this post under control. It meanders a bit and I can't seem to reign it in.
Sorry!
I really do think the steroids are on their way out. It's just an issue of not going too fast or too slow and not screwing it up.
Screwing it up is really easy.
I try not to think about that.
Here is my question.
Exercise is a problem. Even permanent adrenal patients struggle with how to handle exercise as doctors haven't figured it out either and have little to no advice.
Most patients end up increasing their dose and experimenting with various dosages (or they don't exercise at all). It's a bit like roulette because if they up dose in anticipation of the workout and then don't exercise (which happened to one patient I know) it's not pretty and if they don't up dose enough, then they tank which is also bad. It's hard to find a good balance.
I have not yet ever updosed for exercise (as far as I can remember and there is this niggling feeling that maybe I have updosed but am not remembering, so, you know, don't hold me to this) but...
Exercise wipes me out. Really wipes the floor with me. I have an energy hangover the next day and have a hard time functioning due to the 'fatigue flu'. In terms of strength and aerobic fitness, I'm up for it, but the energy production, or whatever its official name, is strained beyond carrying capacity.
This concerns me on a couple levels.
One, I take it as a sign that my HPA axis goes only so far and that there's an opening for more trouble down the line, especially if I get ambitious and try my favorite 'run 400 stairs, then run/walk a mile and do a bunch of push-ups' workout.
Exercise seems to have triggered this latest collapse of the HPA axis (beyond the original insult of being suppressed and having the stomach flu at the same time with doctors refusing to test my cortisol levels and it is only by sheer luck that my doctors didn't kill me and I had the number of a doc who did understand, at least a little, this adrenal shiznit. Why, yes, I am bitter.).
Also what if I get sick? That would be bad and I've developed an impressive hand sanitizer habit as a result. (I have been so so so lucky on the sick front, the toddler has had cold after cold and I haven't really gotten sick except for a couple flirtations with a sore throat. My luck can't last, I know this, but I'm just praying that it holds until I'm past the worst of the adrenal stuff.)
Two, I wonder if I should start updosing before exercise even if I happen to wean completely off steroids and definitely during the taper period.
But how much should I take? How much of a boost do I need? What's the rubric I should use to gauge things?
At 20 mg I still struggled with exercise. So then I think I should try 30mg and see, but that's kind of a high dose now that I seem to have a decently functional HPA axis.
I have no idea how to approach it. Do you?
The obvious option is to not exercise, but that's a tough one because it helps control the insulin resistance. Exercise also helps my lungs cope better with asthma. If steroids hadn't started derailing my life on a continual basis in my 20s, I bet I would be one of those triathalon (sp?) people or a serious amateur swing dancer. I'm an active person being suffocated by chronic health issues.
I can pull back and certainly am not trying to exercise every day right now. I can decrease intensity, but that can be sort of useless and, ironically, will result in deconditioning.
It's not really a win-win situation. It's more of a 'take the good with the bad' thing. How do I achieve the most good and the least bad?
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Diagnostic Tests to Reassure Patients
5 days ago
I think all this "updosing" is going to make tapering worse. I do NOT think there is a "too slow" taper either really. You just have to taper at smaller and smaller increments because each time you taper, the percentage is going to be bigger if you're only cutting pills in half. Try quartering them. Or switching back to prednisone where you can get 1mg pills that you can halve... Go 4 to 6 weeks and allow your body time to adjust to each lower dose. I would "updose" if you're having a bad asthma flare.
ReplyDeleteAlso, quit trying to be a marathon man. Try just gentle exercising until after you get off the 'roids. Need to stop pushing so hard right now.
ReplyDeleteComputer ate my comment. Grrr.
ReplyDelete1.I'm tapering because I believe my body is showing signs of excess steroids. The taper has been painless thus far so I think things are turning around and accelerating.
2.Exercise is now harder than a taper. It just pancakes me and has been doing that pretty consistently. Just the tapers used to always be worse, now tapers make me feel better.
The medical literature talks about needing to stress dose, but only in conjunction with illness. However, my body struggles with the stress of simple exercise, which is why I put forth the idea of updosing for exercise. Because it has tanked me in the past, pretty seriously.
I feel I need to proactively manage it somehow so I don't hurt myself again.
I mean yeah I can dial it all down a notch, but that's pretty demotivating. I can't sit on the sidelines forever. For my own health, I need to be active, the adrenals aren't my only problem. Unfortunately.
M (Pissed Off Patient)
M
If it were me, I would take a small dose after exercise if you feel yourself going down. I would take 2.5 mg and see how that worked. Not 10mg. And remember if you give your body cortisol, the body will get greedy and want more and more. Do you take your HC split into 2 or 3 doses...I can't remember.
ReplyDeletemo
Hey Mo. I just take one dose as the goal is to have lots of time where my body has nothing to prompt an HPA axis response.
ReplyDeleteDo you updose after exercise then? 2.5mg seems low but I would rather under dose than over so I could start with that.
M (Pissed off Patient)
OH, I was doing a split dose briefly as it took a while for my body to adjust to the Hydrocortisone. For a while, I did 2 doses in the morning before noon so the muscle cramps wouldn't hit until after I was done working. But I don't do that anymore.
ReplyDeleteM (POP)
Well,as for your question about exercise...I don't. I split my doses because it works for me. If I took it all at once, I would not do well in the late afternoon. We are all different.
ReplyDeletemo