Early on in my DX last spring, I was put on 10 mg Pred and then to 40 and then to 60 and stayed all summer except for 2 attempts to taper me off but had to go back to 60 and start for periods of time and finally tapered me to as low as 30 mg for a couple weeks a month or so ago. Because my breathing was going south on the less pred, my pulmo put me back up to 60 mg and began an immediate taper of 7 days at 60 and 7 at 50 ,7 days at 40 and now I am at 30 mg for 14 days as she will be going on vacation and the hope is that I hold stable til after she returns after xmas. Then the plan is to start a taper to 20 mg. That would be the lowest dose Ive had since January of this year. On the lower doses as I said, my breating gets harder and Im on oxygen 24/7 right now, also on the lower doses, I get edema which is one of the reasons my pred dosage was rasied again at one point. I also have kidney disease with the wegs and my nephro says they are funtioning as they are but I need to cut out ALL sodium in my diet because this is in her opinion the cause of my edema and possible fluid around the heart and lungs making it harder to breathe, makes sense to me. The fluid build up is due to my kidneys not being able to do full duty when called upon as I understand how they work. I can rationalize all of this but it seems that when I decrease my predisone, my breating gets worse and my spirometrys are worse, I begin to get swelling throughout my body and now, I have been on the 30 mg for 4 days now and my energy level has gone from 75% to around 30%. I asked if it was possible to be living on the predisone so to speak but no sure about the answers I got other than it helps to get my wegs under control. On the flipside of the decreases, after my dose is raised back up, I see no big reversal of problems. Instead I get more of a stablization of my current condition. My question is, Is this the way predisone is supposed to work? Also is it possible for the lungs and kidneys,etc to work their best solely on the predisone in higher doses, because with out it my health fails it seems? Anybody else with this experience? The Drs knew I was going to be a tough case because of past medical history. Wegs cases are all tough cases to crack but Im not sure if Im losing the COPD battle or if the wegs is not cooperating with the meds or if my cancer is getting its revenge.
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