3 years + 1 week - Happy Anniversary and Halloween!

 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.

2 years + 7 months + 3 weeks - Happy New Year!?

 2 years + 7 months + 3 weeks - Post Lemtrada

 

June 3, 2022

 

Happy belated New Year, I guess.  I could have sworn I wrote a post in January or February but I guess I only wrote it in my head.  I also started writing a post in early April but even though there was a lot to say, I couldn't find the words.

 

Summary of the last 6 months:

- In February, I started having double vision in the morning.

- I had another MRI but it showed no new lessons.

- We spent months de-cluttering and getting our house ready to sell.

- Listed and sold our old place, closed and moved into our new place, finished moving out of the old place, closed on that and tried to fit our life into half the space we had.

- Double vision got worse but then got a little better after we moved.

- Had a follow-up appointment with my Endocrinologist, an appointment with my Neurology PA (for the eye thing), a regular Optometrist eye appointment (update my glasses), an initial appointment with a Neuro-ophthalmologist (for the eye thing), had blood work done and a CT Scan for that, had a second follow-up with my Endocrinologist, a follow-up with the Neuro-Ophthamologist, and a 6 month follow-up with my Neurologist.

- Visited my cousin in Atlanta at the beginning of April (that was a nice break).

- Went to a wedding in Missouri at the beginning of May (that was nice too). 

- I finished my 4th and final yoga teacher training intensive via zoom and graduated from the program. 

- My son graduated from high school.

- I am now in Michigan.

It's been an insanely chaotic 6 months. 

 

My Endocrinologist lowered the Methimezol from 5 mg to 2.5mg per day in February and my thyroid hormones have been in a good place since then.  

 

The double vision started at the beginning of February and was just happening first thing in the morning.  I woke up one morning and looked at the alarm clock and saw two clocks, one over the other one.  It took about 5-10 minutes for me to be able to see straight then I was fine the rest of the day.  I made an appointment with my Neurology PA; through her screening checks we discovered that my double vision showed up when I looked to the far left and I had some eye soreness.  Also when I closed my eyes, shook my head then opened them again it took a couple seconds for my vision to lineup again.  She suspected that it had to do with my eye muscles because the double was on top of each other rather than next to each other.  She had me go in for the MRI and put me on a steroid, she wanted to do an infusion but because of the president's day holiday weekend, they gave me an oral steroid.  As I mentioned above, there were no new lesions.  The steroid helped the soreness but the double vision in the morning was the same.  It stayed pretty stable until April when the bulk of the stress hit.  I noticed that it seemed to be lasting longer in the morning, I noticed it sometimes during the day and I was noticing it at night when my eyes would get tired.  Once life calmed down a little, I went back to that base line I started with in February.  The Neuro-opthalmogoist found that the muscles under my right eye were swollen.  It showed up on the CT Scan and he didn't find any markers in my additional blood work that showed any other possible issues. I did ask about the worsening that seemed to be related to stress.  He said it made perfect sense because my brain is working to straighten out my vision and when you are under high stress your brain gets distracted with dealing with the stress and doesn't have enough capacity, basically, to also deal with the vision stuff.  He prescribed an 8 week course of weekly steroid infusions.  It took me a few weeks to set it up with everything that was going on the last 3 weeks but I did my first dose this week; 500 mg of Solumedrol.  The last time I was on that it was like taking speed but that was also 5 days in a row and I was on an oral steroid before that so we'll see how it goes.  It's been two days, that evening and yesterday, I felt a little bit "peppy-er" but I am not feeling that great today.

 

During my Neurology appointment, we just reviewed everything that had been going on and talked about my next Lemtrada infusion.  As much as I wanted to, I just couldn't squeeze it in in February.  I am planning to do it in early October.

 

That's where I am health-wise and the rest of it...it's just been a lot.  Everyone knows how stressful moving is in general.  Downsizing is extra stressful because you feel like you've gotten rid of a lot of stuff then when you actually move, you realize how much more stuff you still have.  Furniture-wise we did a good job paring down; it's just all the stuff.  How do you accumulate so much stuff without even realizing it?  It's emotional, uncomfortable, stressful, cramped...we'll get through it.  Going through the process sucks.  For the first time ever we have a storage unit (we actually have two, a medium and a small). 😳 We usually make fun of people who have so much stuff they need a storage unit and here we are.  George Carlin has that bit on stuff...so true. Here it is if you want a laugh.

 

I am hoping to use the summer in Michigan to recharge my batteries because there is still a lot to do in Texas.  We were only in the new place for 3 weeks before we had to leave.  One of those weeks we were still bringing things over from the old place and for four days we were out of town for a wedding; we really were only able to make it livable but there are still boxes all over.

 

Anyway, that's it.  I'll check-in after my steroids are done with an update on my eyes.

Have a good summer.