7 Years?!?!

7 Years - Post Lemtrada

October 26, 2026

Can you Believe it? 

I cannot believe it's been seven years. In seven years, my kids went from high schoolers to graduating college.  I went from being crazy busy to a kind of bored empty nester.  I hit the half century mark and I am still waiting to hit menopause. Like seriously, will it just get here already!

I really meant to post at least every year. I did start a 5-year anniversary post but never finished and here I am two years later.  The reason I wanted to post at least every year was because when I was researching Lemtrada I found several blogs from people going through the process then at some point after the first year or two they dropped off and I really wanted to know how they were still doing.  

So here's the summary: my MS is stable.

You can stop reading now if that's all you wanted but if you are interested in some other details from the last three years, here it goes.

 Previously in my last post...

Way back in 2023 (I had to re-read my last post to remember), I had just stopped taking Methimazole because it was slowing down my thyroid too much and I was about to do a CT scan with a tracer to see how my thyroid was actually functioning.  I did not end up doing the CT scan because my thyroid levels had returned to a normal level and it wouldn't actually have shown anything. So my TSH, T4 and T3 levels have all been in the normal range since the summer of 2023.  My thyroid anti-bodies (TSI) were still elevated and my left eye seemed to be bulging more than my right which made my right eyelid look droopy.

My Endocrinologist recommended I see a plastic surgeon who specialized in eye surgeries.  They also had experience using a medication called Tepezza which neither my Endocrinologist nor by Neuro-Opthomologist had experience with. Off to a new Doctor (this is in 2024).  She called what I had Thyroid Eye Disease (TED) which I think was the first time I had heard it called that.  I also learned that you don't have to have thyroid issues to get TED that it's an autoimmune disease on it's own.  Mine was caused by my thyroid going haywire for a minute aka Graves' disease. This doctor did not think I was a candidate for Tepezza because one of the side effects is hearing loss and I already have hearing loss so she didn't want to take the risk. My only real option was surgery. Since my TSI numbers were trending down we decided to wait until those numbers were back in the normal range.  I also did another round of steroids that summer.

In the fall of 2024, my Endocrinologist checked all my numbers again and everything was within the normal range including my TSI numbers.  I saw the eye surgeon again; she said it didn't seem that my eyes were bulging anymore but that the left eye lid was still contracted especially compared to the right. Making my left eye seem wider and my right eye lid droopy in comparison.  I decided to do the surgery; I had it done in the spring of '25.  It was an outpatient surgery in their office. The worst part about it was having an eye patch over my eye for several days. The surgery was a small cut on my eye lid to relax the muscle.  You can barley see the scare and the eye lid is lower than it was. The only problem is now it's a little lower than my right eyelid so I have the opposite problem as before and the lid doesn't follow the curve of my eye so that's really what makes it look a little "off".  It's now been a year and a half and it's done healing. I could have them do a "stitch" in my eye lid to raise it a little but there is no guarantee it will ever match my other lid and this time it would be considered cosmetic so insurance wouldn't cover it.  I keep going back and forth about whether I want to do it. It's not super bad and I wear glasses. Right now I've decided not to.

Currently, I am following up with my Endocrinologist once a year in the spring and I get my annual physical in the fall so my thyroid numbers get checked twice a year.  So far so good without any medication. 🤞 I am checking in with the Neuro-Ophthalmologist once a year to check my optic nerve which was damaged during one of my early MS relapses.  I haven't had any MS/eye related relapses since 2005.

Neurology

I've been seeing my Neurologist once a year. I did brain MRIs in 2024 and 2026; no new or growing lesions!  The Lemtrada is clearly doing what it was supposed to and because of COVID, I only did one round of Lemtrada not the two rounds a year apart like they recommend.

I have had some old symptoms like occasional leg spasticity in the morning that I know is my MS and other things like some low grade depression, forgetfulness and fatigue that I can historically link to my MS but now I am also going through perimenopause (which is not fun), it could also be that.

Other Stuff

Another thing that happened this year is that I got frozen shoulder.  Which apparently is common for women my age and has to do with hormones.  I have an "on again", "off again" habit with exercising.  I was trying to get "on again" last fall. I was starting to get some pain and restriction movement in my left shoulder that was getting worse the more I was exercising.  An MRI showed no tear so my primary care doctor sent me to PT.  It seemed to be helping then it started getting worse.  I ended up seeing an Orthopedist who told me that sometimes it happens to women my age for no rhythm or reason.  He gave me a steroid shot in my shoulder.  It's much better but not perfect.  I am doing the exercises and stretching the PT gave me.  It's possible the steroid shot may wear off in a couple months and it'll get worse but it's also possible that I'll have moved through it.  The Orthopedist said it generally takes a year to work itself out and it's just something you have to get through.  So fingers crossed it doesn't get worse.

I got a flu and covid booster shot last week.  I don't think I have more of a significant reaction then anyone else to them.  My shoulder was sore for a few days, I had the chills for a little while, felt achy for about 24 hours and run down for about 48 hours. Nothing terrible and nothing some advil couldn't handle.  My PCP said that flu is already bad in Texas and encouraged my husband and I to get one.

Wrapping Up

I finally feel like I've wrapped up all the thyroid drama caused by the Lemtrada and I can finally move on to only having my perimenapause drama 🙄 and just doing the MS follow-up.

I mentioned in a previous post that the Neurologist who I was seeing when I took the Lemtrada had a protocol to keep the thyroid side effect from happening but my insurance company didn't want to pay for the medication. So instead they paid for three new specialists, extra testing and an eye lid surgery.  This could have happened anyway but we will never know.

In some ways it's been a long 7 years of blood work and doctors appointments and more doctors appointments but I am still glad that I did it because my MS at least according to MRIs was progressing and so far we've stopped it. 

Thanks for reading. Take care and I'll post again next year...maybe. ;) 

 

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.