Saw the pulmo. Same old, same old. Not quite as dismissive of the edema this time, but not wanting to prescribe meds for it yet, which is fine. I just don't want to bloat to death. Basically, I need to buy a bigger shoe for those days when my feet have swollen past their usual size 9 so I can still exercise. That will be interesting.
Energy continues to be better on 10mg. I don't really 'wake up' until it hits my system. I also still get some residual weakness/fatigue, especially at the end of the day when the steroids have worn off.
However, I baked muffins (pumpkin-cranberry), did the dishes, washed the cabinet faces, wrote an article, played badminton with my hubby and visited my house guest's new apartment.
(Why is it the house guests we like always leave and the ones we can't stand stay forever?)
That's, like, a pretty normal day for me. It was exciting.
My plan with the steroids is 5 days x 10mg, 5 days x 7.5mg, 5 days by 5mg and then alternate days until I don't need it. (More likely I'll ping pong all over the place because it won't be linear.)
I'm not sure why I'm doing so badly. I don't think I suppressed again. I used steroids, but kept the doses very low because:
1) High dose steroids don't control the asthma any better in my experience. By the time I've outpaced the five different meds I have in my arsenal, no amount of steroids is going to be a cure. In fact, the 125mg I got in the ER only lasted a few hours, it's impact had faded by the time I was discharged.
For the record, I go to the ER for the nebulizer treatments. Ones with more meds in it than I have at home, which did not happen. Actually, the ER flubbed too. I saw in my discharge papers that I supposedly got 2 neb treatments 30 minutes apart, which is a lie! I wish that had happened! ER Fail.
2)Not breathing is easier than HPA axis suppression. I have said that before and I was so not kidding. I was/am/always will be desperate to protect myself from suppression.
So 125mg solumedrol was the most I got. I metabolized it very quickly--the steroid withdrawal hit me not even 12 hours later, which I thought was strange. Usually it lasts more than 24 hours before assaulting me with full body muscle cramps.
Going back to my original theory--I didn't stress dose enough and put myself in the hole. That one is fairly plausible. I was stingy with the steroids and suspect this is the price I pay for that. Let's hope my payment plan is enough for the piper.
Should I Get a Second Opinion?
3 days ago
Good plan. Hope it works!
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