Lemtrada Round 2: My Drip Stops Here
As you read this, I likely will be in the middle of, or finished with, my second round of Lemtrada (alemtuzumab). Hopefully, this will be the final round of this disease-modifying therapy (DMT), and the final MS treatment of any kind, for me.
Though some have required more, most people treated with Lemtrada receive only two rounds. The first round consists of five infusions over five days. The second round, a year later, is three infusions over three days. If it works “as advertised,” Lemtrada will stop a patient’s MS progression. If it works better than advertised, as it has for more than a few, some MS symptoms actually improve.
I’m doing well, so far
I feel sharper cognitively, and I think that my legs are a bit stronger and my walking is slightly better. My sense of feeling in my feet has also improved a bit. The last brain MRI that I had showed no new, active, or enlarging lesions, but that’s been the case for me for many years.
Lemtrada is a journey
We Lemmies like to say that Lemtrada treatment is a marathon, rather than a sprint. Its benefits may not quickly be apparent. It’s also a roller coaster ride. One month after my first round of infusions, I wrote:
“Month two post-infusion began with a good lab report, but also with an appearance of the up-down fatigue monster. On several days it was very tough getting out of bed. Other days I felt good when I woke up, but then I took a dive in mid-afternoon and had to head back for a nap for a couple of hours. Many nights involved getting up for multiple “pee trips,” which didn’t help my energy level. Add to this one middle of the night and one middle of the afternoon episode of fever and chills (which were handled with 800 mg of Ibuprofen) and it’s made for an uncomfortable ride.
“One day I finally listened to my body and spent the whole day in bed. It helped, but it didn’t stop the coaster.”
It turned out that I’d picked up a low-grade strep infection, which caused a fever that was responsible for some of those problems.
At four and a half months, my wife asked, “Do you think you’re walking better?” She’s a retired physical therapist, and her knowledgeable eye had spotted a little improvement. She was right.
There can be risks
Lemtrada can cause some side effects that can be serious. They include autoimmunity, where immune cells attack healthy cells or organs, and an increase in the likelihood of some forms of cancer and thyroid problems. Because of this, patients must have their blood and urine tested every month for four years. This close monitoring improves my comfort level; my neurologist should be able to spot any problems that are brewing and, hopefully, nip them in the bud.
My journey continues
The roller coaster hasn’t stopped, but it’s definitely slowed. There have been aches and pains that come and go, particularly in my lower back, butt, and thighs. But my good days far exceed the bad. And, the reward outweighs the down days and the risks.
So, I’m buckling in once more, expecting the roller coaster to pick up speed again. I’m crossing my fingers that Lemtrada will indeed be my final DMT and that the IV drip will stop here. I’ll keep everyone posted in future columns.
One bit of disclosure: About a year ago, I participated in a meeting of the Lemtrada MS Digital Advisory Board, for which I received a fee and had my expenses paid in exchange for allowing them to pick my brain. You can read about that experience here.
You’re invited to follow my personal blog at www.themswire.com.
About the Author
Mariel Toledo
such great news, congratulations ! Im a Lemmie as well and only have the first course , and its been incredible , how much I wish all MS patients could be on this treatment, it totally improves your life ! I really want to coingratulate you with all my heart and wish you the very best for the last round .. u'll see u wont need no other one !!! may the Lord be with you in every single step of the journey . Congratulations once again
Ed Tobias
Mariel,
Thanks for your very kind thoughts. I'm delighted that Lemtrada has worked well for you and I wish you further success with your treatment.
Veronica
Hi,
I had lemtrada for the first time all of last week. The side effect i am feeling now, 4 days after my last dose, is I am very gassy and all day my stomach has a burning sensation all day. It is almost like acid reflux all day long. Have you experienced anything similar, and if you did how long before it went away ?
Ed Tobias
Hi Veronica,
The Lemtrada protocol that my neurologist follows has me taking Ranitidine 150mg (over the counter: Zantak) twice a day starting two days before my infusions began and continuing for 7 days following the final infusion. This drug is used to treat and prevent heartburn and acid reflux. The same protocol was followed for my first round.
Following this protocol I've never had any stomach problems from Lemtrada.
Juan Carlos C Benito
I get that with Tysabri, I thought it was just my stomach which has been a problem all my life. I get it the week before monthly infusions.
Greg
I have MS and did Lemtrada twice too. Is it true that Lemtrada will stop the eventual progression of MS to a progressive form of MS?
FYI. Between Round 1 and Round 2, I had fallen (once), hit my head (twice - with two skull fractures!) which resulted in a Traumatic Brain Injury AND then had a case of Guillain-Barre. When people hear about this, I tell them that I'm an over-achiever.
Ed Tobias
Greg,
The clinical trials for Lemtrada have shown that it's successful in most patients in stopping progression and improving symptoms for some. That seems to be holding true in real-world use, including for me. There are exceptions, of course. I hope that you're one of the majority for whom the drug is a help.
I love your "over-achiever" line. Though I'm sorry you've had those problems it seems as if you have the right attitude. I like to say that even a pair of deuces can be a winning hand if you play it right.
Kevin Keplinger
Hi Ed,
Best wishes with the Lemtrada. Just wondering as to why you chose that instead of HSCT.
Ed Tobias
Thanks, Kevin. My neurologist says Lemtrada is sort of "stem cell lite." I'm almost 70 years old, Lemtrada is fully paid for by my Medicare + supplemental insurance and as I'm writing this my final round is dripping into my arm. Tests confirm my feeling that I've had some improvement, and no progression, in my disease and I'm happy with that.
Sue Kramss
Just completed my last infusion, round two, of Lemtrada on August 28th, 2018. The first week I struggled with crushing fatigue (worse than MS fatigue if such a thing is possible) and non stop migraines headaches. Now I can add Cluster headaches to the mix. But this week was completely different. I am more energized and active than I have been in years. But alas, i don’t expect this to last. Probably just the Solumedrol having its last hurrah with me. I am just hoping I don’t have a repeat of last year. I spent December through April with the Flu (a gift from my husband’s boss who felt the virus was no excuse to miss a day of work, in turn infecting everyone else), as well as bronchitis, pneumonia, several UTIs and sinus infections. That’s one draw back to having treatment in August. You hit rock bottom with your immune system just in time for cold and flu season. But as May arrived I felt great. I enjoyed the three month reprieve before returning for round two. I’m just going to be a lot more careful with avoiding crowds, using my hand sanitizer and making sure my husband gets his flu vaccination this year! Hoping for Lemtrada to do itS magic this time!
Ed Tobias
Hi Sue,
Thanks for taking the time to write.
I guess you know that our Lemtrada journey is a little different for each of us. If you read some of my earlier columns about Lemtrada you can get a feel for what my roller coaster ride has been like. (It included a bout with strep a couple of months into Round 1 and a UTI shortly before Round 2).
I'm now at 5 months post Round 2 and the positives have far outweighed the negatives.
Best of luck to you,
Ed
Emil
Hi everyone,
My experience with round 1 for me was that I felt completely like a brand new me compared to the Avonex or Rebif days. The foggy feeling inside my head gone I still limp but I walk a little faster, my mood improved. I told my doctor that I didn’t need a second round. I wasn’t able to get a second because of insurance until after 2 years, I m going to do my second day of it tomorrow and I hope I get more improvement. Someone can tell me about breaking the news to their company and what happened after that
Ed Tobias
I was already retired by the time I began my Lemtrada treatments, so I had no issues. In terms of my MS in general, I was totally candid about it before I was hired by my most recent employer, the Associated Press. I worked there for a little over 32 years before retiring.
I'm fortunate to have worked for a company who had no problem hiring someone with MS and, when necessary, making a few accommodations for me. I know of at least two other people with MS who have worked there for many years as well as others with other medical problems.
On the other hand, I've heard stories of people with MS whose employers have not been accommodating as mine. So, the choice can be difficult.
My feeling, from years of working as a manager, is that I would rather have an employee be up front with me than hide potential problems. As an employee I think you will do better personally, and if necessary legally, if you are open and honest with your employer about your illness and your potential needs.
Russ
8 months since round 2 of Lemtrada. I would never recommend this procedure to anyone. It has caused my ms to progress. I have never felt so weak, off balance, I now have foot drop in both feet. Cognitive function has declined, made me depressed, frequent urinating, always constipated, have had 4 uti’s in the last 6 months. The drug us supposed to reduce relapses by up to 70%. I am experiencing MS worse than ever in 20 years. I asked my Neuro that before 8 took it that I can not take anything that will make me physically worse as my wife and I have a 2 year old. He resuaded me to take it as it will arrest it now. It has done the complete opposite. I really feel let down and feel like another lab monkey.
Ed Tobias
Hello Russ,
I'm very sorry that Lemtrada hasn't worked for you. Fortunately, as I approach one year post-Round 2, I'm doing well and some of my symptoms have improved a little. I hope you're able to find a treatment that works for you.
Ed
Robbie
Hi Russ,
I am sorry to hear your experience but I am writing this to say I have experienced very similar symptoms and I am 10 months post second round. Are you still experiencing these or has there been any improvement?
Ed Tobias
Robbie:
The column under which you're commenting was written about a year and a half ago. I'm now 18 months post Round 2 and I have seen some improvement. I wrote an updated report earlier this month: http://multiplesclerosisnewstoday.com/columns/2019/10/30/lemtrada-infusions-dmts-side-effects-observations-round-two/
Ed
Lisa
Hi everyone! I am almost one year post round 1 and will be starting round 2 in a couple weeks. Round 1 went surprisingly well for me (still not fun but a lot better than I expected). Now as I’m approaching round 2 I’m getting nervous again and I’m worried it won’t be as smooth. I know everyone’s experience is different but I’m looking for some words of encouragement. I have a husband who works shift work and a 2 year old daughter and I’m feeling a little overwhelmed. Would love some positive feedback right now... (if in the off chance that my round 2 is a horrible experience, I promise I won’t hold it against you if you talk it up! ?) thanks!!
Your fellow Lemmie - Lisa
Ed Tobias
Hi Lisa,
OK, I'll oblige.
It's been nearly a year and a half since the end of my Round 2 and I've been getting ready to write an update column. Here's a preview.
Like you, though I had no reason to be I was nervous about Round 2. But I put that nervousness aside, as I'm sure you will. My Round 1 was very smooth and the only hiccup during Round 2 was a little BP drop on day two while I was in the rest room. After being helped back to my lounger, and lying down, I quickly felt better.
Now, my MS continues to be stable and my symptoms, particularly bladder and energy, seem to have improve a little. I've had none of the roller coaster of fatigue that I had for about six months following Round 1.
I hope this helps. I'll have a little more detail after I have a checkup in October.
Please keep us posted on how you're doing.
Ed