I’ve just passed the second anniversary of my Lemtrada (alemtuzumab) treatment. My first infusion round was the first week of December 2016. Round 2, delayed by four months, was done last April. So, it’s time to update my Lemtrada journey for you.
Lemtrada, in case you’re not familiar with this treatment, has been described by some as “HSCT lite.” The medication kills specific B- and T-cells that are thought to play a role in attacking the myelin that covers our nerves. After each infusion round, the body slowly regenerates those B- and T-cells. It’s hoped that the new cells will return without a protein called CD-52, a “hitchhiker” that’s believed to turn the cells into myelin-attackers. The regeneration can take several years.
Doctors believe this process can stop MS progression in its tracks. In some cases, it has reversed some symptoms. That’s what’s happening to me.
Lemtrada seems to be helping
The standard tests show I’m doing well, nearly two years into my treatment with Lemtrada. My MRIs have shown no new, active, or growing lesions. The 25-foot walking test has improved, though only very slightly. Speed on the 9-hole peg test has improved each time I’ve completed it. Balance is good.
But tests aren’t real-world benchmarks. Here’s how I judge my progress:
I recently slept through the night three nights out of five…seven straight hours each night! I can’t remember the last time I’ve done that. For years, I’ve been waking up two or three times a night to use the bathroom. I still have lots of interrupted sleep, but now it’s usually just once or twice a night. My sleep-through nights used to occur just once or twice a year, but now they’re trending toward once or twice a month.
My daytime bladder urgency and frequency have also improved. Recently, far fewer gotta-go-right-now moments have occurred. I completed a five-hour car ride from New York to Maryland a few weeks ago with only one pit stop. I drove three hours nonstop from DC to Maryland’s coast.
My fatigue seems to be a little less than it was and my brain seems a little sharper. Nighttime cramping in my calves and feet seems to happen less frequently.
Ups and downs
But, this progress hasn’t come quickly. I was on a feel-good/feel-bad roller coaster for the first six or seven months after my first round of infusions. The roller coaster returned after the second round, with the lowest point around the six-month mark. But the ride was smoother the second time around.
And there have been some specific problems.
Since my Lemtrada journey began, I’ve had mild lower back pain and mild to moderate pain in my hip flexors. I’ve also had one urinary tract infection and a case of strep. The thyroid medication that I started using long before my Lemtrada treatments had to be tweaked. Overall, however, the problems have been minimal.
As I wrote in December 2016 while lying in the recliner as I began my first infusion:
“I’ve been told to expect a roller coaster ride of good and bad days for a week or two — headache, body aches and fever — some days feeling like I’ve crashed and burned, and others where I’m feeling very well. … After four or five months I’ve been told that I should see an improvement in my overall endurance.
“That’s quite a ride for a 68-year-old guy to anticipate but, as I’ve said several times in writing about Lemtrada, the potential benefit makes the risk and discomfort worthwhile.”
What’s next on my Lemtrada journey?
I can’t predict what the future will hold for me. Some side effects have been reported several years post-infusion. An advisory about a new side-effect was issued a few weeks ago. Some people have continued to have relapses. For some, a third round of infusions has been prescribed. But as I write this, I believe it’s been the right treatment for me. Hopefully, it will also be my last. The drip will stop here.
(A version of this post first appeared as my column on the MS News Today website).
Hi Ed ;
Thank you for sharing your experience.
My 32 years old wife will start her first round of Lemtrada in few weeks after trying interferon and gilenya.
We are both aware of the risks however we hope to have a better quality of life and keep MS at this stage only .
Thank you again for being such inspiration for everyone .
Have a great day
Atif
Hi Atif,
Thanks for taking the time to write a note.
As you say, there are risks to Lemtrada but many of them can be handled by careful monitoring. And, Lemtada has proven to be a much more effective disease at stopping MS than the interferon drugs or Gilenya.
Your wife has many more treatment choices available than when I was diagnosed at age 32. I wish her well.
Ed
There’s no doubt that
Ed, thank you for documenting your Lemtrada journey thus far. Aged 52, I was diagnosed two months ago. First hand experience of Lemtrada is difficult to come by plus I know no one with MS. I will go on Lemtrada at the end of this month as a first line treatment. I’ll aim to write it up. Chris D
Hi Chris,
Thanks for taking the time to drop a note.
You’re unusual, I think, in being able to use Lemtrada as a first line treatment. As you might have learned, there’s a difference of opinion in the medical world, (not to mention the insurance world), of whether a powerful medication such as Lemtrada should be used first, or only after others have failed to be effective. It’s a very hard choice but I’d like to think that I would have chosen Lemtrada if it had been available when I was diagnosed. It seems to be the DMT that has the best choice of stopping this disease dead in its tracks.
Yes, be sure to at least keep some kind of journal, at least for yourself.
Good luck,
Ed
Hello again Ed,
I am in week 3 following completion of round one of Lemtrada. I was very anxious about Lemtrada before treatment as I had difficulty finding any first hand reports of those having undergone the treatment before me. I hope readers will find this update useful and reassuring. Despite what I have written here, I consider this a GOOD RESULT for me while accepting I am only 4 weeks in. Hopefully those with forthcoming treatment will have a fairly good experience too.
The side effects I experienced were entirely those known about and were to be expected. On the first night following treatment (Monday), while trying to get to sleep I definitely experienced heart palpitations (like a syncopated heartbeat) and I could feel my heartbeat very strongly in the front of my neck. Disturbing but not unexpected; arterial dissection most definitely on my mind that night. Subsequent nights less so but most nights I was aware of my heartbeat as a whooshing in my ears while trying to get to sleep; that was much easier to accept than night one. Infusion caused a very severe rash starting the first evening and going on all week and into the weekend but IV antihistamine given each morning completely controlled it. Rash then flared up each night at home. Ask treatment nurse about taking OTC antihistamine at home. First weekend following treatment (IV antihistamine no longer an option) I took the highest available antihistamine dose from drug store and rash went away completely after a few days. On day one during treatment also had intermittent headaches, intermittent upper chest pain and **shivering for maybe 4 hours starting early afternoon** which resulted in high temperature probably worsened by wrapping up in a blanket because I was cold. Wouldn’t let me go home until temperature was brought down; 1g paracetamol did the job. Every day and hourly I had obs taken (blood pressure, heart rate, oxygen saturation, temperature). Blood pressure frequently higher than usual, heart rate normal to LOW, SO2 99-100%, temperature normal except as noted above. Btw I drank a very large quantity of water on infusion days (take a large bottle as someone is probably going to have to keep filling it for you as you’re attached to an IV trolley all day) and overnight at every opportunity that week and into the weekend. I was not entirely sure why water was recommended for chemotherapy/Lemtrada as nobody explained. But I am aware of the risk of kidney damage and do not want that.
Day two only (and day three a little) worst upset stomach I have had in my life. Possibly due to how many drugs I had been started on simultaneously on Monday (steroids, antihistamine, antibiotics, GI, antiviral, Lemtrada plus usual vitamins). Only 2-3 hours sleep that night. Day three only thing to report was increase in/return of some MS symptoms – some tingling in R hand and L face. Went away.
Day four lot of lower back pain in evening owing to sitting for so many hours on IV. Got a chill in evening, shivering. Early to bed. Noticeable heart irregularity again in night. Very little sleep. Day five nothing new to report. No more irregular heartbeat from day five onwards.
Weekend and week one after Lemtrada, some MS symptoms returning eg. stomach muscle tightness, short lived headaches, acute abdominal pain on and off left side only. Sunday almost fainted in shower 3 times after running up stairs; quite possibly exertion (bad idea, take it easy for a few weeks). Hot flushes cold sweats. Symptoms just mentioned were common themes for a couple of weeks and then subsided a lot.
Curious observation: I have been able to breath very freely and deeply since first week following treatment and not sure why. I have no preexisting health issues at all, normal weight, fit and don’t smoke. I wasn’t particularly aware I had developed a breathing restriction up until then. I think this was an alleviation of MS symptoms (MS hug?) I didn’t realize I even had.
Week 2 post Lemtrada, feeling pretty good and upbeat – so back to work (commuting but avoiding busiest trains); got chest infection but did not require treatment and has almost gone (note I am still on the antibiotics supplied during Lemtrada week). Week 3 (this week) picked up stomach bug; but gone in ~24 hours.
Regarding medication started on day one of Lemtrada week and then continued at home; I was given 4 weeks supply of antibiotics, 6 weeks supply of antivirals, 4 weeks supply of GI tablets (understand they protect stomach against action of other tablets). Of course I am on a listeria diet; note I have found a lot of healthy/harmless looking foods such as premium fresh fruit juice can be unpasteurized. Also almost every yogurt in supermarkets I use are bio yogurts but only say so in the small print.
Hope this is useful Ed. Best wishes all and good luck.
Ed – to answer your question as to why I was immediately offered Lemtrada as a first line option following diagnosis: I am not in the US. Thanks again.
Thanks for the detailed info, Chris. Much of it is similar to what others on Lemtrada have gone through.
As for the water, as explained to me a lot of the reason is to continuously flush out the dead cells killed by the medication.
You can find a LOT of user experiences, good and bad. on one of the Lemtrada Facebook groups. I prefer the Lemtrada for MS Treatment group: https://www.facebook.com/groups/1723792797845130/. Keep in mind that people with poor experiences are more prone to post than those for whom things are going very well.
Ed
Ed, I’ve wondered about your status several times since your last post, so it was great to see this one. Honestly, you’ve been an inspiration.
As a 71 y/o woman with ppms, who recently had her 3rd Ocrevus infusion
I understand the ups and downs and the wonderings that follow treatment, . After waiting 10 years for a disease modifying medication to come along, I was overjoyed and immediately signed-up as soon as it became available. I see improvement in my stamina which is encouraging.
Thank you for sharing your story. My best wishes for your continued progress and good health. Keep the faith.
Karen Riley
Hi Karen,
It’s so nice of you to take the time to write. Getting notes like this mean a lot and encourage me to keep writing even, as I wrote a few weeks ago, “I’m too tired to write tonight.”
Let’s hope your Ocrevus journey leads to improved health for you.
Regards,
Ed