Four Year Anniversary!

Four Years

October 15, 2023

Today officially marks four years since Lemtrada Infusion day one.  I did my last monthly blood draw a couple of weeks ago.  I am very happy to not have to worry about that any longer.

Here's a summary of the last year:

In February, my neurologist had both my brain and spine scanned.  All MRIs came back with no significant changes.  That was great news!!!  

I saw my neuro-ophthalmologist in February.  There was no change in my eyes (measurement-wise); I am still not having any perceivable double vision.  He was fine with continuing to wait and see. 

In June, I saw a new endocrinologist.  Basically, she just reviewed my history and continued me on Methimazole.  She scheduled me to have a CT scan in October.  It's the kind where you take a tracer pill then a couple hours later they do the scan to see how things are moving.  She wants to see how slow, my thyroid actually is since I am only taking 2.5mg of Methimazole.  

At the end of July, I started experiencing an increase in hair loss again.  This happens occasionally and is usually related to my DHEA levels.  My functional medicine doctor ended up running a lot of hormone type of blood work because nothing was showing up as a specific cause.  Actually, she noted my TSH levels were high two months in a row (thyroid being slowed down too much) which can cause hair loss.  I contacted my endocrinologist and she had me stop taking Methimazole in late August.   The extra hair loss seemed to stop for a couple weeks then increased again.  We never found an apparent cause so she had me decrease my DHEA supplement and we are going to recheck in 4 weeks to see if that made a difference so far it hasn't.

In August, I saw my neuro-ophthalmologist again.  Before the appointment, I had noticed that my right eye lid was looking droopy compared to my left eye.  I wasn't sure if my eye lid was actually droopy or if my left eye was bulging more in comparison.  It ended up being the later; I had a feeling that was the case.  My right eye has gone back to "normal" but my left eye is still where it was when I originally saw him in April 2022.  Again, we are going to wait and see.

I am scheduled to have the CT scan this week; I'll follow-up with my endocrinologist the following week.  Obviously, I'll want to talk about the results of the CT Scan but also what my eyes are doing and if I can expect my left eye to get better or if I'll need to take medication.

The Big Question...

The big question is; was it worth it?  Was it worth it to completely kill off my immune system (which is crazy when you think about it)? I've been thinking about this a lot and my honest answer has to be "yes, I think so".  If I had a crystal ball and knew the pandemic was coming, I think I would have done my treatment during the summer so three or four months earlier but I think I would have still done it.  Even with the new thyroid and eye issues and extra specialists.  Really, if I had a crystal ball I would have known for sure if it was worth it because I would see my future if I had not.  🤷  

All I know is that I had significant changes in the number of lesions on my brain between my MRIs in July 2013 and January 2015 then more significant change between January 2015 and November 2018.  I even had an active lesion in 2018 but didn't have sensory signs so I didn't know.  I had gotten that MRI because I was having an unrelated issue with my ear.  Even though I went almost a year from my November 2018 MRI until I took Lemtrada in October 2019 and still didn't show any new progression on my September 2020 MRI, I was heading in the direction of increased lesions and disease.  Doctors don't know how many lesions are "too many"; when the scale starts to tip into Secondary Progressive.  Really, I am lucky I didn't have any progression in those 11 months before Lemtrada and I've now gone an additional 3 years and 2 months with no progression so to me, it seems to have worked.  I'll have my next MRI in February then I'll have the results from all four years.

Going forward I plan to update this blog once a year.  The point of it was to share my experience with people who are considering doing Lemtrada because I found others who had blogged about their experience helpful but a lot of those blogs dropped off and I wonder how they are doing now and if they still think it was worth it.  

I had been posting part of my blood work results but I am not sure how helpful that is.  I will post a graph of my Lymphocyte numbers because that's what most people consider your "immune system".  That is one thing that I wish had gone differently.  My neurologist at the time had a protocol of knocking down your B-cells if they were coming back faster then your T-cells which he felt staved off the thyroid issues but my insurance wouldn't cover the medication he wanted to use to do that.  It'll always be in the back of my mind whether that would have made a difference with my thyroid issues but we'll never know.  Anyway, I will post a Lymphocyte graph showing my numbers over the last 4 years.

Thank you and I hope you all have a good 2024.  Take care; I'll post again next year.

 

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.