Information Overload Precedes Lemtrada Infusions
You know the saying about having too much of a good thing? I think that’s me, right now, as I think about starting infusions of the multiple sclerosis drug Lemtrada on Dec. 5.
Lemtrada is supposed to be a super drug. As I wrote in an earlier column, my neurologist calls it “stem cell lite.” Some wheelchair-bound MS patients have been able to take some steps after completing a course of Lemtrada. Others report similar improvements in other symptoms.
There’s even a Facebook page where Lemtrada patients post selfies showing themselves smiling while hooked to their IVs and where they report about their experiences. This is where my information overload begins. This, I think, is why I’m nervous about starting this drug.
You see, the people who post on the Lemtrada page really tell it like it is. And, for every post about someone whose MS symptoms are improving, there’s another written by someone who’s having side-effects of chills, rashes or burning legs. At least it seems that way.
“I’ve had a urinary infection basically since treatment in April….My lymph nodes have been so swollen and sore the last couple of days, I’ve had a fever and feel terrible. Praying for relief.”
“I woke up this morning with three sores in my mouth. I have also been super fatigued, been having a lot of weird nerve pain, body pain and my mood has been really off for the last week or so. I have contacted my neurologist.”
“Just completed my first cycle of Lemtrada now dealing with flu like symptoms without the running noise…”
“I hate to admit it but I am getting very excited about the thought that the suffering of this long week could result in a cure… I will be disappointed if it does not”
On the other hand, there are patients who, it seems, don’t suffer any side effects.
It’s always been my feeling that the potential benefit of the MS drugs that I’ve used for 30+ years has outweighed the risk. So, I really can’t understand why the possibility of feeling “super tired,” feeling like I have the flu, or getting a sore in my mouth is bothering me.
I’ve always tried to get as much information as I can about things before I make a commitment, whether the commitment is to buying a car or booking a trip or using a drug. But I think I’ve reached the point where the information is hindering more than it’s helping my decision-making. It’s information overload.
So, goodbye to the Lemtrada Facebook page for a while. Maybe I’ll be back after my first round of treatment ends, and join the posters to praise or complain. I hope my post will be similar to this one:
“Six days after my round #1! That’s the day I woke up feeling wonderful…..no MS symptoms/problems and everything was great……now, almost two years later, and it is still great!”
Fingers crossed.
[My personal blog can be found 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.
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Comments
Greg Bond
Agree, am also considering Lemtrada and have seen many posts from "Lemies"
What you have to keep in mind is the fact the majority of patients don't post anything unless it's a bad experience or a good one. Probably less than a few percent of those taking the drug post. You need to rely on the trial results and neurologists experiences
Ed Tobias
Hi Greg,
Thanks for your comments. You're right about who posts. My #1 information source is my neurologist. In her, I trust.
Ed
Esmee
Exactly my feelings Ed and Greg. It is true people usually only take time to post when there is something really positive or negative to be said, forgetting that being stable is the main reason way the drug is here. We all are hoping for something positive to come out of it (so do I ofcourse) but I hope it will keeps me stable long enough and enjoy life without too many side effects until we actually have a drug that can reverse things (there needs to be hope).
Esmee (hopefully starts Lemtrada in January)
Ed Tobias
Thanks for your comments, Esmee. Good luck to you in January.
Ed
Mike Deegan
I have been on Lemtrada since 2010. It is nothing short of a miracle drug. I was diagnosed in 2008 and immediately started on Tysabri. I did a lot of research on MS that year and decided that Tysabri was too risky for me - as well as being inconvenient with monthly infusions.
Lemtrada was still very much in trial and was known as Campath at the time.
My neurologists were very surprised when I refused to take Tysabri after 12 months and even more surprised when I said that I would have Campath/Lemtrada or nothing.
After a wait time of about 8 months, I was prescribed the drug on 'compassionate grounds'.
It's effects were immediate.
I have completed my 2nd round of therapy last year and I'm hopeful that I will never need any more drugs.
It passed all of my demanding requirements on safety and efficacy.
I recommend it to anyone who wants to cure their MS.
It's really an amazing thing to have done what I said I would do - cure the incurable multiple sclerosis.
I had highly aggressive, highly active relapsing remitting MS with 40+ lesions on my very first MRI.
Tim Bossie
That is really great to hear Mike. We are glad that you are doing so well on Lemtrada. It really does pay to be your own advocate at times. :)
Ed Tobias
Hi Mike,
Thanks for sharing your story. I'm glad it's working so well for you and I'll keep your success in mind as I start the infusions. Bottom line...we all need to be our own patient advocates.
Ed
Peggy
I have been diagnosed with my MS for over 25 years and have been on Betaseron, Copaxone,Mitozantrone (which is a chemotherapy) Tysabri, and have had plasmaphoresis. My MS would build up immunities to the other drugs or they just didn't improve my symptoms. I have now finished my second course of Lemtrada this past February 2016. I'm more towards the primary progressive stage. Lemtrada has been the most helpful as it is holding me steady and my progression is at a stand still. I have had none of the possible side effects from the Lemtrada & they perform blood tests monthly. I am a deep believer that you have to go into any possible help for MS with a Positive, Optimistic attitude & realize that you may have to work around the changes that MS sends your way! I think if you listen to individuals that only think negatively about any part of MS you end up negative. Sorry for carrying on about this but Lemtrada has been the most wonderful/helpful drug I've been on!
Ed Tobias
Thanks for sharing, Peggy. You've added foundation to my positive attitude about this drug. I'll keep everyone posted on how it goes.
Ed
Deana
I'm one of the " Lemmys " that dont post about their experience. I'm about 2 months post round 1. I was very nervous before starting and found some comfort in reading about other's experiences. I have good days and bad days, but most importantly I have hope.
Ed Tobias
Hi Deana,
Thanks for the comment and sharing your hope.
Ed
Charles
Thanks for this post Ed. I have had ms for twenty years and been on various medications from the beginning, including 7 years on tysabri. I am now going to start lemtrada in the new year. I agree with Peggy that a positive attitude is the single biggest thing you can control to help your resilience in fighting the disease. Good luck with your treatment.
Ed Tobias
Thanks, Charles -
Round 1, Day 1 began about 30 minutes ago. Stay tuned.
Ed
Kyle
I just finished my 2nd round of lemtrada 3 weeks ago. Although I read that the second round is easier to get through, not in my case. That being said, I am full of optimism and willing to take the lumps to reap the rewards. After the first round, my year was a lot of hills and valleys, but it was the hills that kept me hopeful. At my best, I can walk short distances unassisted, and at my worst even my cane does not instill confidence as I trudge on. What keeps me hopeful is the highs are where my potential exists. Or in other words, the damage has not been so bad as to have rendered me immobile. I am looking forward to the year and years to come. I feel great optimism, and quite truthfully, what is the alternative? Upward and onward my friends.
Ed Tobias
Thanks for your comments, Kyle. I wrote this column about a year and a half ago. I'm now coming up on 3 months past Round 2 and things are going well. Like you, I've had a roller coaster ride but I'm very happy with my choice.
I've written several columns about my Lemtrada journey, which you may be interested in reading. I think you'll find most, if not all, of them if you search this website for "Lemtrada journey."
Best of luck,
Ed