3 years + 1 week Post Lemtrada
October 26, 2022
Happy Halloween!
As always the summer flew by along with September. June was quiet but the rest of the summer was pretty busy. My son (my youngest) started college this year so the business included moving him into his dorm.
I ended up doing eight steroid infusions total. Four weekly at 500 mg of Solumedrol then four more of 250 mg. I didn't notice any improvement after the first four doses but I started to notice that things weren't as far apart as they were and that the double vision didn't last as long.
I had a follow-up with my endocrinologist in July. She was happy with my TSH, T3 and T4 numbers but was concerned that I was still having eye issues. She said that typically when the thyroid is treated and under control, the thyroid antibodies go down and any eye issues typically clear except in rare cases 🤚 which seems to be me. She wanted to wait to see what difference the steroids made and what my Neuro-Ophthalmologist said after my follow-up with him. She did say there was a new medication (Tepezza) that can help lower the antibodies but wanted to see what he found first.
In August, I had a six month follow-up with my Neurologist and the follow-up with my Neuro-Opthalmologist. The only major thing that came out of my Neurology appointment was that he suggested that I not do my second dose of Lemtrada. He asked if I wanted to and I said not really; I was only doing it because that's what you were supposed to do. He said it's because that was what was done in the trials and since I am doing well, he didn't think it was necessary right now. He also mentioned that I could do it later if I needed to and that it wasn't likely but it's possible it could make my Graves Disease worse. I felt a weight lift off my shoulders! I had been so stressed about trying to squeeze it in. When is a good time to take your immune system offline? Really, never. That decision made me very happy.
During my Ophthalmology appointment, he did all the same measurements/ tests as last time. He measured how far "off" my eye alignment was and apparently it was the same as it had been in May. Even though my perception was that things were getting better, clinically they were not. He was happy that it seemed to be stable and not getting worse though. He recommended that I take Tepezza but wanted to check in with my Neurologist and Endocrinologist first.
I found out that it's not a medication in the traditional sense; it's an infusion treatment. Eight infusions total, every three weeks so the whole thing takes about 6 months. Not ideal. I read about the side effects too and those don't sound great either. Since the Graves Disease itself is a side effect, I am extra leery about taking something I don't have to. I sent him a message and asked if I didn't do Tepezza, would my eyes get worse? He couldn't answer that question and suggested I ask my Endocrinologist.
I was supposed to have a follow-up with my Endocrinologist this month but she was out sick so I was reschedule to the beginning of November.
The takeaways here are NO Lemtrada and the double vision is better but still there and we are trying to figure out what to do next. The other good thing about not doing Lemtrada again is that my lab work clock wouldn't reset so I only have one more year of that instead of adding an additional four!
Take care all.
