My Lemtrada Journey: A Little Dip on the Roller Coaster
I’m now three months past my second round of Lemtrada treatments, so it’s time for an update.
I began Lemtrada (alemtuzumab) in December 2016, hoping it will be the last disease-modifying therapy that I’ll ever need to use. I’ve had peaks and valleys since this treatment began, thus the roller coaster analogy that many of us “Lemmies” use, but the peaks have far outnumbered the valleys. (I’ve included links to earlier columns about my Lemtrada journey at the end of this post).
My June Lemtrada dip
I guess I really should have been more careful with my hand-washing. Toward the end of June, I caught a cold. Lemtrada knocks out a lot of your immune system to allow it to rebuild without the “rogue” B- and T-cells that are believed to play a part in MS. So, people on the Lemtrada therapy are more susceptible to infections. A cold would normally last three to five days with me. This one hung on for about three weeks. My nasal congestion and cough weren’t terrible, but the illness kicked my fatigue level up a few notches. The fatigue wasn’t nearly as severe as when I caught a case of strep a few weeks after the first round, but it was enough to keep me from getting out of bed to walk the dog (on my scooter) for a few mornings. It also forced me to follow the advice of my neurologist and her staff to “listen to your body.” So, I took a lot of naps.
Overall, the ride has been smooth
Lemtrada seems to be acting as I’d hoped it would. I’ve seen no disease progression, and some of my symptoms seem to show slight improvement.
A few months after the first infusion round, I experienced a slight rise in my thyroid-stimulating hormone (TSH) count, indicating an underactive thyroid gland (hypothyroidism). It was quickly, and easily, corrected with medication. A year after the first round, but before starting the second, I had a brief urinary tract infection. It was quickly cured with a few days of an oral antibiotic. I had a period of sharp leg pains, lasting a couple of weeks, about five months past the first round. I’ve experienced none of the other common side effects, such as a rash, headache, itching, or infection with the herpes virus.
As I write this, I’m feeling good. I think I’m walking a little better, I’m a little sharper cognitively, and I don’t feel the need to use Provigil (modafinil) as much as I did to keep up my energy level. My brain MRIs have shown no new, active, or growing lesions (though that was also the case before Lemtrada).
I’m hoping that my MS will continue to be held in check and that I’ll not need any further treatments with Lemtrada, or with any other disease-modifying therapy (DMT).
My next MRI and physical exam are due in the fall, so I’ll update again then.
(Full disclosure: In June 2017 I received a fee from Sanofi Genzyme, and had my expenses paid, to participate on a Lemtrada digital influencers panel.)
My Lemtrada columns:
Starting Down My Lemtrada Road – Dec. 6, 2016
My Lemtrada Infusion: Five Days Done – Dec. 13, 2016
Lemtrada for My MS: First Month Report – Jan. 10, 2017
My Lemtrada Coaster Has Been Rolling – Jan. 27, 2017
My Lemtrada Journey: Do You Think You’re Walking Better? – May 2, 2017
My Lemtrada Journey: A Six Month Report – June 20, 2017
My Lemtrada Journey: At 9 Months a Cane Tells a Tale – Sept. 15, 2017
My Lemtrada Journey: A New Year’s Update – Jan. 5, 2018
Lemtrada Round 2: My Drip Stops Here – April 10, 2018
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Comments
Beth Nigro
Hi there!
I am in the process of deciding whether or not to try Lemtrada as my next dMT after failing Tysabri and Ocrevus. I wonder if you don't mind me asking how old you are? My doctor has brought up my age twice in my discussions about possibly moving on to Lemtrada. I'm not sure if he thinks I'm too old to benefit or too old to recover from it or what. I'm 51 and otherwise pretty healthy - well, with the exception of a pretty aggressive case of MS. I'm following your Lemtrada journey closely and really appreciate that you are sharing so much about it for those like me who may be on this path soon too.
Ed Tobias
Hi Beth,
I'm more than glad to share my age. In a little less than a month I'll be 70. So, to me, you're just a kid! Though most Lemmies seem to be younger my neuro, obviously,felt my age wasn't a factor.
I did well on Tysabri for several years but I had to change DMTs when my JCV titer score reached a point where the odds of a PML infection became too great to continue. I moved to Aubagio, which also worked well for me. However, when I started Medicare Part-D the crazy Medicare rules prohibited the drug company from picking up the cost of my co-pay any longer. So, I asked to return to an infusion. Infusions are covered by Part-B and it, plus my secondary insurance, covered the full cost.
My neuro gave me three choices: Lemtrada, Ocrevus and a third that I don't remember. Lemtrada seemed to provide the best benefit/risk ratio.
If I were you I'd ask your neuro, flat out, what his concern is about your age. Please keep us all posted on what happens.
Regards,
Ed
Beth Nigro
Oh yeh, we will definitely be having many chats about his age-related comments. He should be very afraid. ;)
I started on Tysabri for 15 months. Failed that. Got right on Ocrevus nearly at FDA approval but after three full doses, I just keep getting symptomatically worse and worse all while having stable MRI's. He's offered Lemtrada as an option that I am seriously considering. I'm really wanting to nip this downward spiral in the bud if I can before it's too late? But then again, nothing about my experience of this disease has been even remotely "normal" so my decision feels even more complicated. I so appreciate hearing about your experience and learning about your journey! I blog about my experiences with MS so I will definitely share as this decision rolls out. Thanks again! I'm inspired by you!
Ed Tobias
Thanks for your nice comment, Beth, but I'm nothing special. Just a guy trying to dance in the rain rather than hiding from the storm.
My neuro calls Lemtrada "stem cell lite" and has a lot of patients on it. There's a very good Lemtrada FaceBook page: https://www.facebook.com/groups/1723792797845130/. You'll find good and bad experiences there, but people with bad experiences tend to post more than those with good...so please keep that in mind if you scan through the posts.
Ed
Dianna Pardon
I was on tysabri for seven years which I did well on until I develope JCV virus, me and my doctor decided I go on Lamtrada, the first infusion I felt the worse Ive ever felt in my 17 years of having MS I went from a cane to four wheel walker I was falling more I develop a rash on my back I ache and pain more in my legs, my legs are more spastic than ever I feel like I'm walking on stilts, I was unsure if I should get second infusion the following year, my doctor recommend I get it, which I did hoping I would feel better, regretfully I got and felt the same feeling crappy as ever, so for me Lamtrada wasn't a good choice, but even though I feel worse one good thing MRI showed no new lesion on brain
Ed Tobias
Hi Dianna,
I'm so sorry that Lemtrada hasn't been good for your symptoms but, I agree, new new lesions on the brain is good news.
I wish you the best.
Ed
Abby
From what I understand Lemtrada is given in two infusions a year apart and in theory you never take it again. How does that work? Some other DMT's you seem to need to take regularly, in theory forever (or more probably until you switch to something else).
Ed Tobias
Hi Abby,
You're correct about the theory.
Lemtrada seeks out and destroys specific B and T cells in the immune system cells that carry a protein called CD52. These are believed to be the white blood cells that attack the central nervous system in people with MS. (The first series of infusions is the first killer punch, the second series targets any cells that escaped the first time). After those cells are killed, the body manufactures new white blood cells that, hopefully, don’t carry the MS-related protein. In theory, these treatments should halt any future MS progression without the need for any additional treatment.
As I understand it, no other DMT is designed to wipe out the rogue immune system cells, so that the body can replace them with good cells, the way Lemtrada does.