“Isn’t it a bit unnerving that doctors call what they do “practice”?” ~ George Carlin
Once again, the day has come for me to choose what medicine to take for my multiple sclerosis. After 15 years I have lost count how many times I’ve had to make this decision. Unfortunately, with each new treatment, I continue to progress, new lesions appear and I become more disillusioned.
I almost chose to be on no MS medication at all. But the nurse in me said to keep searching. So with the help of my doctor and family, I made a decision. We built a united front and decided to start taking a drug called Lemtrada.
I was attracted to Lemtrada because it is generally given to people who have tried two or more MS medicines that have not worked well enough. And that’s me.
So my neurologist signed me up. But before I can start taking the medicine I have to go through a battery of test. When compared to other MS treatments, Lemtrada is one of the strongest. That strength also means it has additional safety risk and side effects. So that sucks.
Lemtrada is an IV infusion that is completed in 2 courses. The first treatment is given over 5 consecutive days (1 dose per day). The second treatment is given 12 months later, over 3 consecutive days (1 dose per day). Each day will be 4 hours of infusion plus 2 hours of monitoring for any side effects.
It sounds so overwhelming. And after all these years I still can’t believe I have to deal with this. The worse part is the constant fear of not knowing what’s next.
I already knew I had a bunch of lesions. That wasn’t a surprise. What shocked me was learning I had developed new lesions. That really hit me hard. But In the midst of my depression, I realized the deficits from the new lesions have been with me for a while. So seeing new spots on my MRI really didn’t make a difference since I have already adjusted to the damage it caused. This also shows I am strong enough to continue to adapt if more lesions appear. And that’s the way I have to live my life now, constantly adjusting and adapting.
So despite being a little shaken, emotionally I feel hopeful and happy I still have treatment options available. But I’m also a little sad my choices are running out as I try yet another MS drug.
Nicole,
A bend in the road is not the end of the road… unless you fail to make the turn. ~Author Unknown
Sending hugs and kisses your way! I am in awe of your courage and your ability to remain encouraged during your struggles with SPMS. I cannot begin to understand what you go through on a day to day basis but remain empathic to your plight. Know that I love you very much and constantly pray that you see not only remission, but an improvement with this new drug.
Aunt Pam,
I’m making that turn!
Nicole
Hi Nicole,
So glad to hear/read that you say it sucks…I never talked like that until I was diagnosed with MS in 2006, but MS sucks so let’s stay real:) Thank you so much for always keeping it real and being open & honest with your posts, you have helped me to be ok with not being ok and for that I am one of you biggest fans!
I know that I’ve been one of the “lucky ones” that have been diagnosed with MS so far, in that I’m able to run long distancesa after having to use a wheelchair to purchase groceries each week just 3 years ago. Your courage as you face such a nasty progressive debilitating disease such as MS has inspired me to just #KeepMoving regardless of how I’m feeling. So just keep it real, an keep moving, as you inspire others to #nevergiveup. #MSRunnerDude
Nicole,
Please let me know how you find Lemtrada. My neurologist is suggesting it for me…
Thank you for sharing Nicole. I encourage you to fight the discouragement. Remember how much you are helping all of us with your advice and depiction of your own struggles. You are a light for us all.
Hi Nicole,
I have just ‘stumbled’ across your blog and read your latest post – it is eerie to ‘see’ my own story and current situation reflected in your words but I am finding comfort in knowing that I’m not alone in feeling frustrated, discouraged and apprehensive about the future. All the best
Your story resounds in my psyche…… I have failed 3 therapies…. I have had no new MRI activity in 3 years (thankful) but debate constantly yes or no to go on another DMT. Probably Tysabri would be my next step but ….. so hard to decide. I send you a big hug……. best of results with whatever decision you make.
Nicole, Im sorry to hear this. I can only imagine how this feels, holding out for the next and the next.. I have a slightly different story to tell. I have been on 1 dmd since diagnosis,just about 5 years, Betaseron and am in the process of preparing for an appeal to my insurance company of a decision that I be placed on a generic form which was tried last year January. I switched to Extavia and within 1 mo. I had 5 serious nosebleeds, the last of which sent me to the ER, where I had yet another one. The reason the insurance co. wants me to switch is purely for the cost. So far, I have had no new lesions, which clearly means that the Betaseron is working. I would have no problem switching my dmd if it were for reasons associated with efficacy and I am not apologetic for the cost either, or I am I being penalized for having MS? I hold on to hope for a cure, only hearing the news of yet another FDA approved med. Its fair to say that I am skeptical of all things Big Pharma. Nicole I wish you well with Lemtrada , I hope this is the one for you.
My heart goes out to you. I don’t wonder that all of us MSers don’t, in our own way, keep poking at things that must might work. The sad truth is that nobody knows anything about what might work for YOU… trying a “one size fits all” solution is doomed to failure from the start, as “one size fits all” actually means “one size fits all badly.”
Keep trying, but as the Hippocratic Oath says, “First: Do no harm.” If whatever-it-is is alleged to be a good idea but for the harm… don’t do it. As an operational rule, it has worked for millennia.
Robert,
I haven’t felt like responding lately but couldn’t pass you up this time. I Must be feeling better.
Nicole,
I will pray that this drug will work for you and that only kind people will cross your path . It seems that the little things can add up to happiness and MS definitely makes us take one day at a time. You keep on blogging and looking for an answer! Strategize!! Make your mistakes , take your chances, look silly , just don’t freeze up. From Thomas Wolfe
Vivian
Nicole, I enjoy your posts and I look forward to reading. Yes, I am nervous about Lemtrada but more neurologists seem to be gaining comfort around this treatment. I would always say that I have found user experiences to be incredibly helpful too because they are on the actual treatment. I am on Tysabri right now and I am still always worried about the risk. Sending you hugs and prayers as you seek to make the right decision for your treatment.
Nicole,
I pray this one works for you.
I have heard some people are having great results with Lemtrada. Good luck, my friend.
Sincerely,
Faye
That does suck my friend-so sorry… Sending you hugs and prayers.
Hi Nicole. I pray this new drug brings positive results for you. I know it gets exhausting but you have come a long way. I get frustrated because although my MRI was stable(and I’m grateful) my symptoms are getting worse. Like you, I’m learning to adapt and adjust. Take good care!
Best of luck on your new medication. I hope that this one will slow down your progression. (fingers crossed)
Hi Nicole and yet again the best of luck to you with this drug. I have not tried it yet but like you, I too am running out of drugs to try. And I too have been depressed as this past week has brought on a worsening of current symptoms and it’s difficult not to think of the future and what will happen. Again you’re always in my thoughts and prayers and I am hopeful this new drug will bring you some relief.