The 5 Frustrating Ways Lemtrada Didn’t Cure Me
The 5 Frustrating Ways Lemtrada Didn’t Cure Me
I finished round 2 of Lemtrada 15 months ago and last week I was asked by MS OnetoOne, the mandatory support program for Lemtrada users, for feedback as to how this drug has made a difference in my life. Until now, I’ve hesitated to write about my experience but they promised to throw in a $25 gift card for my trouble so, clearly the universe is telling me it’s time.
I know what they’re looking for, with their flashy prize money. Now that my treatment is over, they wanna hear about how I went from having a life ruled by disease and disability to one where I almost forget I have MS. They wanna hear how I went from laying around all day watching Golden Girls, to hiking the Himalayas and crossing shit off my bucket list; that I ditched my old lady aqua-fit friends because those blue-haired bitches were holding me back.
Now I teach dolphins how to swim.
This is not that story. I would never ditch Myrtle. And dolphins are jerks. But I really want that vague gift card (please let it be 8 bags of Miss Vickie’s chips), so I’m hoping my less-than-miracle story still qualifies.
How Lemtrada Has Changed My Life
My Hair
The biggest and most noticeable change is that I have blond hair now. Obviously. I mean, it’s the first thing anyone who hasn’t seen me in awhile notices. It’s possible that “OMG you’re a blond now!” is more socially acceptable than “OMG you’re using a walker now!” but I like to think the walker isn’t all that noticeable.
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| that hair tho |
My grades are higher
When I started Lemtrada my EDSS was one whole point lower. I was walking with a cane, some of the time. Now I’m using a walker/rollator all of the time. Too bad MS is opposite world where things like ‘progress’ and higher EDSS scores are not going to make me an honours student.
Secondary Autoimmunity
Lemtrada straight up murders your lymphocytes and 15 months after round 2, mine are still a little afraid to come back. If you have an autoimmune disease, your lymphocytes are your best frenemies who can’t decide if they wanna kill you or save you, so they do both. You need those two-faced, back-stabbing lymphies to keep your immune system in check, so while mine are still low, I almost always have a UTI and if you sneeze within earshot, I will treat you like the leper you are. But exposure to Lemtrada opens you up to way more risks than just the flu (just the flu? I’d rather have herpes). Some risks are known, like thyroid disease and actual herpes, but since this drug is still new, others are a surprise, waiting to be discovered. Like the one I developed that has sent me to the ER several times and requires me to see a whole different kind of specialist.
New Friends
Lots of people on Lemtrada make new friends during their infusions or through online forums. Personally, I’m on a first name basis with the nurses at the lab where I’m required to have a donut and a full blood work up once a month for the next million four years. There’s also my MS OnetoOne friend who emails and calls, uhm, a lot, to remind me to get this work done. I mean, I thought she was my friend. She asks a lot of super personal questions but gets wierd when I ask her the same. One time I didn’t call her back or answer her email and I guess she thought I was ghosting her cause I got a crusty, collection-agent style letter. Priority courier. She’s intense. I’m gonna stay on her good side and get my labs done on time, just in case.
I have to explain myself way more
‘Wait, didn’t you get that beast of a drug that was supposed to stop all this shit?’ is a question I get a lot. Annoying. I’m constantly explaining that it didn’t work that way for me. Then I get to answer questions like ‘Why don’t you just get HSCT.’ Cause it’s not that fucking simple, Brian.
OnetoOne asked for what’s different but maybe the good news is what has stayed the same. My MRI’s are unchanged. In the 27 months since my first treatment, there’s been clear progression from old disease but there’s been no new inflammation. I haven’t had new attacks and I should accept that as a good thing rather than simply seeing it as confirmation that I’m fully SPMS. We’ll never know if things would have been worse or what kind of lurking inflammation may have been shut down. I don’t regret my decision to deal with the devil – I think I’ll always be willing to assume considerable risk for the possibility of being a little better. Lemtrada is an amazing drug. It just wasn’t my amazing drug. And while I’m pretty sure my story won’t make it to the manufacturer’s marketing materials, it’s important to tell all the stories, because we are far from conquering MS and there’s still a lot of work to be done.
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Yes! I unfortunately I did not get the blonde hair but I did receive a dying thyroid which has caused major weight gain . I also sweat nonstop . If I don't have an air conditioner blowing on me, I drip sweat from every inch of my body . I also have major acid refle I also have major acid reflux and chronic fatigue syndrome both of which I did not have before. I had a very severe relapse in February which was 10 months post round two and it significantly permanently changed my vision . Lemtrada was not my miracle .
I'm so sorry to hear that Lemtrada has done this to you. But, at the same time I feel like I'm not alone. I am still in the second Campath trial. First infusion in May 2009, second one year later. Did ok for a while and then all of a sudden it all hit. I had to go on disability. And I loved my job! That caused my depression to just worsen. My symptoms are worsening. But like you, no new active lesions. Very frustrating! I was also diagnosed with Immunogabulonemia in 2015. I've been having monthly IVIG infusions since May of that year. And if I stop, high possibility of getting sick and passing away. I can't do that to my husband and 3 kids. My oldest is 16 and youngest turned 10 today. I honestly believe I have this autoimmune disease because of Lemtrada, but no one will say if that was the cause. Like you, I would still have taken the treatments. Just not as lucky.
Thanks so much for sharing your story!
I agree, except I was never told or read that it was a MS cure.
It stops MS progression and may or may not help the existing nerve damage, in my case 27 years with MS. I have not had a relapse since Lemtrada 2015-2016. But no miracles on existing damage.
Lemtrada failed for me too. I had 2 new lesions after first round, and went through a major flair with 7 new lesions after the second round. 8 days of solumdrol and 2 rounds of Cytoxan (chemotherapy) I am looking at a new drug Ocrevus, I have tried all others which have failed. I still have RRMS, but am left with taking blood thinners for the rest of my life due to blood clots after Lemtrada, and do to all the blood work and the chemo to get the MS under co tell my veins are not good. I am 43 years old. Will keep fighting and prayers to everyone!!!!
Bella the hair looks fab and your latest publication is eye opening. As always, love the read and following you!!! LH
I'm so sorry to hear this Deni. I had terrible reflux just this week for the first time in my life. I hope that's not something I can look forward to. What a rollercoaster this thing is.
Thanks for sharing this Sonia. I'm surprised to hear how many people have had experiences similar to mine.
I had a few rounds of IVIG before I had Lemtrada as an experimental treatment for my MS. It was brutal. Very hard to tolerate.
I'm so happy you had a positive experience. I didn't expect a cure and I knew there were risks to this drug. It didn't stop progression for me. In fact, I didn't seem to have progression until after I'd had this drug and I wasn't prepared for that.
Prayers right back at you. What a nightmare.
Lisa! Your comment was published! Thanks for reading, xa.
Thank You so much for writing this-it made me smile as I'm sitting here at work with the same feeling have my second dose of lemtrada scheduled for this December-this letter I felt was word for word from my thoughts exactly!! Nice to know I'm not alone in this daily battle!!
Best of luck for your December infusions!
Yes it is. I can't stand having it. But, I do make sure to drink a lot of water, take Advil and Tylenol and make sure I get all the fluids with the treatment.
Some months are better than others. But I rarely plan anything that day after my infusion nor the day after.
I am so sorry to hear that the treatment changed your hair colour. I thought that you were trying a new look and had dyed your hair. You probably miss your red hair. As do I.
Joe, I'm sorry to hear that you miss my red hair. I would tell you to die your own hair red but seeing as you don't have any, I can see that this is not a good solution. I might have an old Raggedy Anne doll I could give you.
Sorry you had this bad experience with Lemtrada. It's definitely not a drug to be trifled with. I'm still surprised your doctor offered Lemtrada to you, but not HSCT. Seems like the inclusion criteria for both treatments is about the same. Why do so many MS doctors suck?
Love the way you write. Finding humor in all of this is a saving grace, for sure. As for the blonde hair, that's pretty weird. Have the Lemtrada Gestapo commented on this? Could be a new marketing point. Lemtrada: you might get some terrible secondary autoimmunity, but you also might go blonde. And blondes have more fun with their secondary autoimmunities…
Thanks Marc. I lobbied hard for HSCT and one of the main reasons I was given was that using a catheter would open me up to too much infection risk. Which sounded like a bullshit reason to me. I'm much happier with my neuro now, I just wish I'd found her sooner.
I've yet to hear from Lemtrada but must clarify that the change in hair colour likely had more to do with my stylist than with the drug. As far as we know, Lemtrada does not threaten to hasten the extinction of redheads. Then again, we're still learning a lot about it.
I enjoyed reading your experience with Lemtrada. I had HSCT in Russia last Nov. Time will tell….
Oh dear. For the record you are not the bossy Brian in question who has been telling me to 'just go to Russia and get the stem cell thing'.
Please keep us posted as to how you make out. I'd love to hear about it. That must have been quite an experience.
So you get to eat donuts AND you get a free soul on account of no more red hair?? It doesn't sound all bad! Although I guess it would have been better if it had worked.
Gord, the worst part about trading up my soul is that you and I will no longer get to be roommates in the underworld.
This has really hit home for me. I am scheduled to have my 3rd round of Lemtrada on Monday. I will not do a fourth. No signs of progression on MRI but definitely physical progression. I had a "relapse" back at the beginning of June and have not come back from it. Don't get me wrong, I have some days that are better than others. But the bad days are too many. So far this has not been the drug I was hoping for. Not ready to give up quite yet.
I do have new lesion, and 2 relapse, scheduling 3rd round, not happy but it does seem to be the best drug at this time. Hoping 3 times the charm.
Fingers crossed for you. It does seem to work better for people with active lesions.
Good luck Sharon. I really hope the third time's a charm. This disease is such an asshole.
Thank you for putting it in print. We are often asked about my boyfriends experience with Lemtrada, you nailed it. I said to him "Are you sure you didn't write this?" but I know better, he is not a blonde and in fact only thinner since Lemtrada.
Thanks for reading Bethany. Every time I hear one of these stories I'm stunned by how many have had a similar experience. Nobody talked to me about this before getting Lemtrada.
As a redhead, I've no desire to be a blonde. That alone prejudiced me against the drug. 🙂 Only partially kidding.
"A face without freckles is like a night without stars."
Bella, the hair looks fab and your latest publication is eye opening. Love the read and following you. LH
Thx for sharing, I am about 2 yrs post round 2 and have developed horrible reflux and a 'burner' on my left side not sure if related or just summer in AZ but it sucks hang in there…
I am excited to see that I am not the only one that had a negative experience with Lemtrada. I had 10 new lesions after my infusions. I also developed a palsy so severe in my legs that I now walk with a cane. I went from doing aerobics every day to being unable to walk to the bathroom without assistance. It has also made my bladder a nightmare. I spend more time in the bathroom then anywhere else. I had trouble reading the reactions that most others had with the Lemtrada. I am now on Ocrevus and was told not to expect any improvement in my current symptoms just that I shouldn't get worse. So it goes I guess.
I feel you. So frustrating.
I wonder if doctors are laying out more realistic expectations for this drug than they were a few years ago.
A burner? Is that like a patch of burning skin? I suffer those all year round.
Stay cool in AZ. It's been a scorcher in Toronto too.