Two days ago I lowered prednisone, from 20 mg to 15 mg. This will HOPEFULLY be my last drop. I know, I know...most people's goal is to get OFF prednisone, or at least much lower then 15 mg, but I have never lasted a long time on a lower dose then 15 mg. So that is my goal, to stay on 15 mg for as long as possible. I looked NORMAL on 15 mg...no Cushing's Disease, no extra fluid, no diabetis or glaucoma. I am now on Calcium Citrate and Vitamin D, so we are hopeful that my bones will continue to heal and get stronger. I also will probably start on a bone building drug once I stabilize on this dose, but that is a discussion for another time, and an issue I am not worrying about right now. One thing at a time!
Those were all the good things about lowering: last drop, no more Cushing's Disease, looking and feeling normal, not having to worry about diabetis or glaucoma, and being on a lower dose is better for my bones. Now for the bad part of dropping...the pain, insomnia, mood swings, nausea (and other stomach issues), fatigue, hair loss from the physical stress and change in hormone levels. I go through this for at least two weeks, though the stomach issues come and go for longer as I lose the Cushing's weight. It is one of the worst parts of dropping a dose of steroids, although I know I will like the outcome. It is no fun feeling like Kermit the Frog (It's not easy being green).
The oogly (and yes, I know that is not really a word, but I think it fits here, since ugly is not nearly strong enough to describe what I go through), parts of lowering prednisone for me include: migraine headaches. I get at least two during this process as my body adjusts to the dose. If it was JUST a migraine, which would be awful enough, it would go under the "bad" category, but no, my body cannot leave it at that...along with the migraine headache (which are called hemiplegic migraines because they occur on one side of the head and cause syncope, or fainting), I faint, get horrible muscle spasms down my neck/back/into my legs and literally curl my toes, and the worst part is that my throat and vocal cords spasm as well. There are even times when the spasms (including my throat spasming), happen when I am unconcious, and I "come to" choking. Those times are the scariest for both me and my parents (whichever parent is watching me at the time).
During these two weeks, since I never know when I am going to faint or get a migraine headache, I am rarely left alone. If I am left, it is either on the couch or in bed. I know not to get up without anyone here, as falling, which has happened before, would be devasting for my back or worst, if I hit my head. I cannot afford to fracture anymore bones. I will be super careful when I walk without my brace now, and will be using my lower to the ground hospital bed for the next two weeks.
So like I said, lowering prednisone has its good, bad, and oogly parts...but it is a necessity to get to, and remain at 15 mg. Well, I am on 15 mg now and plan on staying here through all the misery the next two weeks will hold because I can see the light, though it is still in the distance, at the end of this VERY long tunnel! That is what gives me the will power to see this through...knowing I am done...knowing I can breathe a sigh of relief after only two weeks of hell. I can get through this, like I got through all the previous drops. That is my mantra for the next two weeks...I can get through this!
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