Have you ever heard of someone dropping 20 mg of prednisone in three weeks? Well, that is what I've been doing, and I'm just seeing the light and feeling human.
I've been on high doses since August 2019, along with Actemra, a good part of the time. As most of you know, I've continued to have problems of one kind or another. On October 5, the rheumatologist said, "we have to get you off the prednisone, or at least get it down. I was on 40 mg per day because of diminishing peripheral vision in my right eye. I'd gained a tad over 100 pounds, bled like a stuck pig, sugar numbers climbing and kidney number plummeting. Plus, I feel like crap, if I may.
So I started Actemra again; on October 19, I dropped from 40mg to 30mg. I was a mess, shaky, unsteady, emotional, headaches, jaw pain, and aching eyeballs plus, I walked like a drunk and was so weak and sore I had to use the walker all the time and then still failed to stay upright. On 11/5, I saw the ophthalmologist, who again expressed concern about my right eye. My left eye hemorrhaged on the 6th, really dark like clotting. I couldn't get into the eye Dr. and waited for my 11/9 appointment with the rheumy, who called the ophthalmologist but then proceeded to tell me he wanted me to drop another 10mg from 30 to 20mg per day. I was horrified. He said we really had no choice. Our choices were more pred or less, and he was confident I wouldn't lose the right eye. My bloodwork had not been good, CBC with differential and metabolic panel, and though now with the Actemra, my GCA markers would be fine. At that point, I felt so poorly and almost out of body in the sense I'd lost all control. So...I figured, go for it~! I return next month, and we will continue to drop it but slower along with the Actemra.
He wanted me to see the eye doctor and called him. He did another visual field and exam and was not comfortable saying the vision was stable. The ophthalmologist said, "He was just a simple ophthalmologist and referred me to a neuro-opthalmologist who I saw the following day. After examining me, the new man on board called both of the other specialists. When he returned to the room, he said he felt I had optic neuritis in my right eye and put me on 300mg of Gabapentin three times a day. That was last Thursday. He also said he felt confident my vision in my right eye would stabilize. By Sunday, for the first time in months, I DID NOT have a headache. I also noticed that my right vision was clearer and didn't have that fuzziness, fog, or mist, or whatever it was, cast over it. I was surprised when I could see the outline of a doorway on the house diagonally across the way...I could always see the house, lights, and other features but could not make out the door. I would have jumped up and down if I could.
I've no idea where these past few weeks have gone because I don't remember them too clearly. I have home health three days a week which has been great for showering and just doing things I could not stand up for; I still can't but do have more energy.
I held off posting because I always have kept a positive attitude and didn't want to scare anyone or any new folks coming on board in the forum. I still have a great deal of hope, and you know me, faith. I still feel positive about the stabilization of the right eye.
Back in 2019, a big mistake was made by the doctor at the hospital. The ophthalmologist prescribed the pulse dose, three days of 1000 mg of IV; I was only given 100 for two days, then the 1000mg...which allowed my GCA to become fully entrenched PLUS the fact that it was misdiagnosed for at least 9 months. Damage done.
So all of you starting out or struggling with reducing...I'm not a good yardstick. So, don't view my travels with this as typical. You will be monitored and eventually off the prednisone hook. I'm in no hurry to get to -0-, 8-5 would be nice; I've never been lower than 15....and that only lasted a short while.
Bless this forum and every single person in it....💖💖👩🏽🤝👩🏼👩🏽🤝👩🏼👩🏽🤝👩🏼👩🏽🤝👩🏼👩🏽🤝👩🏼👩🏾🤝👩🏼👩🏾🤝👩🏽👭👩🏽🤝👩🏼
Yesterday and today, I did some watercolor painting; I'm making bookmarks for the Meals on Wheels program in the states. For me, thinking about someone else is the best medicine...now that I know what day it is and what my name is.😵🤪
xo Hello....I'm back! and so glad.💖
