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.