Lowering Prednisone is a Good Thing...Lowering Prednisone is a Good Thing

I am going with the notion that if I repeat something long enough, maybe I will start to believe it is the truth.

Of course, logically, I know that lowering my prednisone by any amount, let alone from 25mg to 20 mg like I did, is a very good thing. It lowers my risk of Cushing's Syndrome, osteoporosis (both of which I have, so lowering will help reverse both), diabetes, glaucoma, ect...but right now logic seems to be taking a backseat to the pain and general ickyness that happens every single time I drop my prednisone.

It is difficult to stay logical after having a wonderful, relatively low pain, high fun weekend. I went to Zoo Miami on Saturday and, even though I had to be pushed in a wheelchair, the weather was perfect, the animals were active, and my parents and I got to have a very nice impromptu lunch with my aunt and uncle who live in the area. Next time we go to the zoo, I definitely want to do the rhino encounter...anytime I am able to be up close with an animal like that makes me a happy girl!

Sunday my parents and I enjoyed more gorgeous weather and decent healthy feelings by going to an outdoor shopping plaza. We ate at Jason's Deli, which was so good, then I thought I went to heaven because there was a new TCBY near the restaurant and they now serve dairy-free almond milk fro-yo!! It tasted like the richest dark chocolate soft serve imaginable...so good!! We will definitely be going back there!! The shopping plaza also had a small farmers market that we were able to explore, which is always fun. I just wish it was larger or offered more fresh produce.

So on Monday, when my body registered the drop of prednisone and started spasming and sucking the energy from me like a vacuum, the disappointment I felt, and feel is palpable. I knew going into this that this is exactly how I would feel, but it hits me everytime like a ton of bricks. I don't think I can ever fully prepare myself for the onslaught of emotional upheaval after feeling well...even knowing I will be stable again in just a week, week and a half. With this kind of pain, it is going to be a long week or so...hence the mantra "lowering prednisone is a good thing...lowering prednisone is a good thing".

Hair Hair Everywhere...Chemotherapy medications, lowering prednisone, and a fractured back...OH MY!

Since I last wrote in October, I had to stop the Neoral due to bone pain, which I later found out were my bones fracturing. I started and immediately had to stop mestinon, which is typically given for autonomic dysfunction, because I had such a severe reaction. This reaction set me back in a huge way. I was given high dose IV steroids and subsequent high dose steroids to take at home until the reaction calmed down. This only treated half the problem, though. The other half of the reaction were muscle spasms that made it look like I had tetanus...that is how hard my muscles would lock. The doctors put me on valium to ease the spasms, which helped tremendously.

Due to both the Neoral and high dose steroids, I fractured six vertebrae, my fifth metatarsal (which has healed), and two ribs (which are also healing). Unfortunately, my spine is taking longer to heal. I am wearing a back brace all the time to protect my spine and also keep it straight. It looks kind of like a turtle shell in the back. I started on vitamin D because my levels are so low. They have to come up before I can start on the bone-building drug Prolia.

I also started on the chemotherapy medication, Imuran, to help me lower the prednisone. The first few doses were too low and I still had all the side effects...fainting, migraine headaches, stomach issues, pain, etc. Finally, at 100 mg per day, I think we found the right dose for me. My main side effect from both lowering prednisone and the Imuran is hair loss.

I believe this is a small price to pay, in the long run...hair does grow back, usually prettier then before. I know this because when I first started on steroid-sparing drugs my hair did the same thing. I did wear a wig, which helped my self esteem.I think it is almost time to go wig shopping again.

I am not depressed this time around about the prospect...in fact, I am kind of looking forward to trying different styles, and maybe a different color...who knows? What I do know is that I will pay the price of hair if it means I can lower prednisone without fainting and migraine headaches. Hopefully the stomach issues will resolve themselves over time, if not, I will deal with that too.

All I know is that I am finally down to 25 mg of prednisone and will be, hopefully lowering again next week to 20 mg. I see my rheumatologist today to discuss. I will keep you updated more frequently,now that things are a bit calmer.