I Hope My MS Treatments Are Done for Good

I Hope My MS Treatments Are Done for Good

With apologies to Edgar Allan Poe, quoth the Lemmie, “Nevermore.”

As I write this, the final brown bag of Lemtrada (alemtuzumab) has just begun to drip into a vein in my left arm. If all goes “as advertised,” this will be the final disease-modifying therapy I’ll ever receive.

(Photo by Ed Tobias)

It’s been a long journey since I was first diagnosed in 1980, and the speed bumps have continued right up until the final leg. A couple days ago, during day one, round two of my Lemtrada infusions, I became a little dizzy about 15 minutes before my drip ran dry. It happened while I was using the bathroom. I began to shiver, and my blood pressure dropped to around 80/60.

After being helped back to my recliner and lying back under a couple of blankets, I felt better and my blood pressure began to rebound. Similar episodes have hit me once or twice a year for the past 20 years or so. My doctors have never been able to determine why this occurs. Because this problem began long before my Lemtrada treatments, I doubt that it has anything to do with the medication. However, some problems are related to it.

The Lemtrada rollercoaster

Use any analogy you like: a rollercoaster, a winding road, speed bumps. For most Lemtrada patients, the journey is one of ups and downs. Near the end of January 2017, 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.”

This downslide around six weeks after the first series of infusions seems typical for patients receiving Lemtrada. In my case, it may have been caused by a combination of driving to Florida about two weeks earlier and, somehow, catching a strep infection. (Gotta keep washing those hands.) When the infection cleared, things got much better for me.

Is Lemtrada helping me?

At 18 weeks, my wife and I both thought I was walking a little better and standing straighter. My mind felt sharper. My concentration was better. But I also developed some, hip, back, and leg pain.

At six months, I was able to flex my left foot up from the ankle just a little, and that was new. Cramping in the insoles of my feet, which took place almost every night when I got into bed, had been significantly reduced. My brain MRI showed no new, active, or growing lesions (though that’s been the case for several years). But the aching pain in both hips continued. It would shoot down one or both legs when I put weight on them. It was worse in the mornings, particularly if I was trying to get up from squatting down.

At nine months, my hip pain was almost gone. That may be because I’d gone back into physical therapy a couple days a week and I’d been doing a lot of swimming.

While in Florida earlier this year, I noticed that for the first time in a long time, I could rise from a squat without holding on to anything to help pull myself up.

Thaaat’s all, folks

I was supposed to begin round two of Lemtrada last December. But after learning a lesson from last year’s trip to Florida, my neurologist and I decided to wait to start until after I returned home. And that brings me to today. Lemtrada has destroyed the bad B- and T-cells, and my body is slowly replacing them with ones that don’t have the rogue attachment that attacks my myelin. My neurologist calls the process “stem cell lite.”

I’m feeling good. My lab tests are good. My neurologist says that since I began Lemtrada infusions my walking speed has increased, my strides are longer, my upper extremity mobility is faster and, overall, I’m stronger and more mobile.

My treatment road has been long. I’ve been on one type of disease-modifying therapy or another since 1986, including Avonex, Tysabri, Aubagio, and Lemtrada. Now, it seems I’ve reached the end of that road. In the immortal words of Bugs Bunny …

At least I hope that’s all, folks. I’ll keep you posted.

You’re invited to visit my personal blog at www.themswire.com.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

18 comments

  1. Judy Sumlin says:

    In relation to Ocrevus, I’m extremely excited and encouraged by this article. I’m to begin my Ocrevus in another month and, because of this article, I’m ready! Thank you!

    • Ed Tobias says:

      Hi Judy,

      Good luck to you with Ocrevus. A lot of people have chosen either it or Lemtrada because they’re the “heavy hitters” of the DMTs. Neither treatment is without risk, and those risks vary, but for many of us the rewards far outweigh the risks.

      Let us all know how it goes for you, (maybe in the “MS Drugs” discussion in our new MS Forums).

      Ed

      Ed

  2. Ahou says:

    I have always read your posts and enjoyed them greatly Ed. Wish you best of luck and healthy and happy days ahead. Have a question for you, as an MS veteran, do you think in 2018 there is a room for low efficacy DMD’s such betaferons and Copaxone?

    • Ed Tobias says:

      Thanks for your kind words, Ahou. I’m happy that you enjoy what I write and I hope you find the information useful.

      Yes, I do think there’s still room for the original “ABC” drugs to treat MS. In fact, I’ve recently read several comments, on various social platforms, from patients who’ve had a lot of success with Copaxone over many years.

      Ed

    • Ed Tobias says:

      Hi Jason,

      Since it’s not approved in the U.S. HSCT isn’t covered by insurance. So, it’s much too expensive. Also, at age 69 I think that its risks outweigh its benefits to me.

      Ed

  3. Greg says:

    I have completed two rounds of Lemtrada and also hope it is the last. I don’t know for what percentage of Lemmies need more than two rounds. But, my brain MRIs have showed no new, active, or growing lesions (though that’s been the case for several years). I’m afraid that I can’t determine if my MS symptoms have improved or not since between rounds one and two I had a Traumatic Brain Injury due to a fall plus an episode of Guillain-Barre Syndrome. While in the hospital, MS was ruled out as causing the fall. And, after the first week in the hospital, I was getting worse and I got the diagnosis of having triggered Guillain-Barre Syndrome. So, I’m struggling from other brain problems which overshadow the MS symptoms.

  4. Joe says:

    Hi Jason,
    I wish you luck. Today I had my 3rd Ocrevus Infusion. It’s a long day (8hrs) but it beats sticking myself with Rebif 3 x a week . I was in Rebif, tried switching to Tecfifera but had a very bad reaction. 104 Fever , severe abdominal pain and run down for a month. I started a study w Ocrevus 1 yr ago – so far so good . We and our bodies know what’s good for Uz ( w the help of our Neuro of course ;~}

    • Cherrie Lesher says:

      I will be discussing these newer therapies with my Neuro diagnosed 25 years ago..avonex to rebif to tecfidera now another relapse. Second relapse in the past year and a half since switching from rebif to tecfidera, MRI again next week currently undergoing outpatient IV steroid sol medrol treatments.

  5. Jenny says:

    Hi 🙂
    I have been doing tysabri infusions for almost a year and the last 4 months have developed an alergic reaction to it. My neurologist has me also taking steriods in addition to the tysabri which make me feel very agitated. Does anyone else take tysabri? and what are your thoughts on it. Are there any other drugs that anyone can suggest that work well?
    Thank you!
    Jenny

    • Ed Tobias says:

      Hi Jenny,

      One of the DMTs that I used was Tysabri. I was on it for about 7 years before my tider score reached a level that forced me to change meds. During that time I had no side effects. I also had no flares and very little disease progression. The drug that followed was Aubagio and then Lemtrada.

      Ed

    • Kim Mast says:

      Hi Jenny, I have been on tysabri for almost 10 years…dx 2002! I’ve had no flares and the draw back is the actual infusion time!! For me it works!! Good luck and keep fighting!!

  6. Cherrie Lesher says:

    I will be discussing these newer therapies with my Neuro diagnosed 25 years ago..avonex to rebif to tecfidera now another relapse. Second relapse in the past year and a half since switching from rebif to tecfidera, MRI again next week currently undergoing outpatient IV steroid sol medrol treatments.

  7. Jenn Powell says:

    Hi, Ed, I am Jenn, a fellow columnist (Silver Linungs). I love your writing and am inspired by the information shared.

    DX in 2010 with RRMS, I’ve been on Rituxan for the last 3 1/2 years since my MS has progressed. Seemingly unstoppable, I am hoping my MS may respond better to Lemtrada. Thank you for imparting your wisdom through experience.

    Jenn

  8. Tonya says:

    Hi Ed,

    Pleasure reading your progress. I hope this is your last treatment! I will most definitely keep an eye on your blog! =)

    DX with RRMS in 2013, Mellen Center in Cleveland, Ohio confirmed I was untreated for roughly 9 to 10 years. My PCPs excuse for all of my symptoms over the years was, “You’re fat, lose weight.” I’m on my 4th drug now, Aubagio. I’ve been on Rebif, Tecfidera and Copaxone.

    I see my neurologist next month and I’m so excited to talk to him about these two drugs! It would be nice to not been in constant pain and to be able to feel decent for a change.

    Thank you again, Ed! Have a great day!

    • Ed Tobias says:

      Hi Tonya,

      Thanks so much for your kind words. It’s a shame that so many PCP’s don’t seem to recognize MS symptoms. That’s even a problem for some neurologists.

      I did well on Aubagio and I hope that it’s working well for you. Tysabri also worked well. I hope you and your neuro can settle on a drug that will work well for you, as well.

      Good luck,

      Ed

  9. Shannon Vishe says:

    Thank you so much for sharing your experience. I am 2 weeks post Round 1 and currently in the hospital after collapsing and not being able to stand. My body was just too exhausted to return to work and now I am going to listen to my body and taking some more time off. I am not going to let it get me down. This week is my ten year anniversary diagnosis anniversary and I have done three other DMDs. I have hopes for Lemtrada and seeing your post renews that. This is about the long game, I’ll deal with the speed bumps. I wish you continued success with your health.

    • Ed Tobias says:

      Thanks for your note, Shannon.

      Two important things to remember are listen to your body and hydrate. (Oh, and keep washing your hands).

      I’m now at 1 month post Round-2 and feeling well. There’s still plenty of MS to share but I, generally, feel sharper and have more stamina than I did before I began Round 1. Oh, and I’ve stopped using Provigil as an energy boost. I went off it as I began Round 2, figuring that the steroids would give me enough of a boost, and I haven’t returned.

      It sounds like you have right attitude. Just keep the old Fleetwood Mac song in mind:

      Don’t stop thinking about tomorrow
      Don’t stop, it’ll soon be here
      It’ll be here better than before
      Yesterday’s gone, yesterday’s gone

      Now, please don’t kill me when you’re humming this to yourself for the next week.

      Ed

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