Everything with the Cyclosporine is going well so far. Haven't gotten sick. Haven't grown super bushy eyebrows. I might have a little more hair on my face but luckily its blond.
It's the prednisone weaning that's giving me problems. (Wow, that's putting it mildly) The withdrawls are ROUGH! Going from 20mg to 10mg... I thought I was dieing. I change doses on Wednesday. By that Thursday night I couldn't even move. I felt like I had the flu. I was having head aches almost every day as well. I can't take Advil or anything so I usually just drink a Diet Dr. Pepper for the caffeine. But I don't like drinking soda too often.
So I emailed Dr. R & of course he was fantastic & wrote right back. He told me to try splitting my dose; half in the morning, half in the evening. It has REALLY helped with the head aches. But then I was having problems going to sleep because I was taking some of the steriod at night. So I've started taking Melatonin which has helped.
A new, fun side effect of the taper is that I'm loosing chunks of hair. I luckily have a lot so I'm hoping it won't cause too many problems. But I'll probably have to cut it so the regrowth isn't weird. I guess it'll depend on how much I loose.
This Wednesday & Thursday (going from 7.5mg to 5mg) didn't go so bad. I was tired on Wednesday but felt good on Thursday. Thought I skipped the rough part. No sir... it came with a vengeance yesterday. I was so tired I napped when the kids napped. After being asleep for a while, I could hear that the big kids were up but I literally could not wake up. Finally I heard the baby calling for me so I got up. But it was really hard & I could barely get him out of the crib. I spent the next 2 hours on the couch. I didn't have the strength to stand. I felt a little better this morning & now I feel good.
I know I can taper slower but I feel like I'll still have some of the symptoms & it'll just prolong it. I know I have a rough couple of weeks coming but really can't wait to be off this crap.
As far as the FSGS, I don't really know where I stand. I think I'm spilling less protein but my test strips expired so I think they're not working right (they still say I'm spilling a lot). I'll do my cyclo bloodwork next week. I feel like I won't have a good grasp on how I'm doing until I'm off the pred.
So there it is... my super boring update. But that's what's up.
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