Do you know those round cages that they spin for Bingo? With all the balls tumbling around? Well, that is what my head feels like, and my body must be saying, 'What the heck is going on?"
It seems the infection that invaded my body at the beginning of the month has been having fun by upsetting the balance of all the other meds I am on. Yesterday I saw the rheumatologist and infectious disease specialist. They said my system at the moment was like 'a highwire balancing act.' The infection was the trigger, which X'd out the Actemra, which meant more steroids which threw the seizure meds off....so we are holding steady. Hopefully, those meds will be corrected tomorrow or at least played with. The ride has gotten much smoother over the last few days, and I feel much better. The ophthalmologist said he did see an area of my good eye that 'showed some decrease in the visual field.' My eyes seem really sensitive to light, easily corrected.
I'm so graceful~~~I just bumped into a footstool (two days ago), and I got a good three-corner tear in my left leg, so the ID specialist put me on a short course of antibiotics. Sometimes it is a win-win; sometimes, it is lose-lose. I'm going to have to work on the way I carry this steroid-inflated body about!!
The important thing is right now, I have a good team on top of things...for that, I am very grateful, and I don't have to look far to see much younger folks with much worse issues.
Thank heaven we have each other to bounce all this off of to let ourselves know that we are NOT such an extreme exception and things will turn around. 💖💖
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Grammy80
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It really is your turn isn’t it? I a, glad you have faith in the team around you. This would be too hard to unravel alone. Glad you feel better. It never rains but it pours. Get well soon! 🌺
Yes, Jane, I told my rheumy it was getting a bit harder to try and put a positive spin on things. He is great~~He said he could well imagine and then said, 'Now if we can just keep you from bumping into things.' 👀👀
Oh Grammy, what are we going to do with you? You are having a torrid time!....
I’m glad they’ve brought in the ID Specialist to look at you & a fresh pair of eyes is very worthwhile. I hope the antibiotics help & you can start to get back more on an even keel, how long have you been on Actemra now?
Thanks!! I started on Actemra toward the end of September 2019. You may recall I was on prednisone, methylprednisolone, and now prednisone again.
When I was diagnosed, the symptoms would not stop raging. The correct diagnosis only came about because I lost sight in my left eye, and they did a biopsy that was positive for GCA.
The pain just kept going, and I've always felt the following was the reason, even though it is just my opinion. Like most patients, I was supposed to get 1000mg IV of Prednisone for 3 days. In the hospital in Maine, they had inserted a feed for IV, but a nurse came in and gave me a syringe of medication in that tube. I came back to the hospital the next day, and the same thing happened. On day three, the gal that brought me to the hospital was a nurse practitioner. When she saw what happened, she questioned it. It was discovered that the Doctor who wrote the original order had made a mistake by translating the ophthalmologist's order for 1 gram of prednisone to 100mg. So, I got shortchanged at the beginning.
So, Angela, it hasn't been a smooth, well-managed course. As I have learned more over the past few years...thank you all...I think I was probably misdiagnosed for at least 9 months and maybe 12. 💖
Hi Grammy. You have such a lot to deal with and yet you constantly remain positive, thankful and just simply quite amazing. You're an absolute inspiration to us all and I want you to know that when I'm moaning about my own aches & pains....that are completely insignificant compared to all your own daily challenges.....your attitude and positivity reminds me to feel grateful and lucky for the many good things I still have in my life. You lift us all up with your 'glass half full' attitude and I truly wish good things for you from now on. Let's hope that the supportive medical team around you continue to be effective in alleviating your current health issues.
Sending much love to a lady with one of the strongest fighting spirits I know!
💖Thanks so much! It is a lot easier to 'hang tough' when I have all of you...who have gone through so much and just continue forging ahead. This forum is the Home of Champions.
Hi Grammy, apologies but somehow I missed your post early this morning. All I can do is to agree with everything everyone else has already posted. I hope your present team manage to get it all under control and sorted ASAP. Best wishes.
Love your glass half full approach and the fact that you have a good team supporting you. Hope things get sorted very soon and you will feel so much better. 💐xx
Thank you so much, it sounds like you have had a journey with many speed bumps but are going slow and in a good place. I'll be fine if I have to stay on a low dosage for the duration. I don't have any beauty contests coming up soon and at 80 I'm not expecting any. Give me some quality time each day and I'm good!! Best to you💖
Quick PS: It is almost 3 pm, and I just got back from the neurologist. Let's say he was an experience and he won't make the team. I was happy he didn't change my seizure meds because I have not had any issues this past week and ALL may settle. Plus, his foot was hurting him so much that was all he could talk about...just didn't feel like he knew the person in the room with him. A clue: He asked me if I would be staying on 20mg of pred for life.
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On Actemra now and reducing Prednisone
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Stopping Actemra 
