“The oldest and strongest emotion of mankind is fear, and the oldest and strongest kind of fear is fear of the unknown.” ~ H. P. Lovecraft
This week I continue with the next phase of tests in order to qualify to start taking the MS drug Lemtrada. I need to have blood work done monthly and the results monitored. A part of the monitoring involves observing if the last MS drug I was using, Rituxan, is completely “washed out” or eliminated from my body. Thus, all effects of the Rituxan must be assumed purged before I can start taking Lemtrada. Apparently, being on two powerful drugs at once would dangerously weaken my already vulnerable immune system.
The more I think about it, the more the process of initiating Lemtrada scares me. I’m not afraid of the side effects or the small amount of people currently on the drug. My fear is due to the idea of this being the last mainstream MS medicine available to me. Unfortunately, I have unsuccessfully tried almost all of the disease-modifying therapies and this looks to be my last hope for a conventional treatment.
Not taking medicine for my MS is something I have never considered. But if Lemtrada fells to stop my progression I may find myself, battling MS without the help of an MS drug.
The idea is so foreign to me I can’t even bring myself to do research on successful non-pharmaceutical options. I don’t even know if there is such a thing. So for right now, I’ll hope for the best and perhaps Lemtrada will be the answer I have been looking for.
It just sucks that I am always “hoping for the best”. I know that’s not the case for the majority of people. Most have a medicine that meets their needs. But for me, since my transition to Secondary-Progressive MS (SPMS), I have jumped from one medication to the next. So maybe if these subsequent phases of testing work, all that jumping will finally be over.
Praying for good results with this drug Nicole! We luv ya and are always hoping for the best results! Much love and prayers to everyone posting on this blog going through similar struggles. Call us if you need anything!
Aunt Pam&Uncle Clifford
Thanks and your invited any time
I wish you the best. Love
Your heart knows you better than Big Pharma. If you’re being battered by “I really don’t know about this….” LISTEN to it. I’ve never gone the DMD route; my Chinese-medicine guy takes good care of me and ***never*** gives me side-effects. And his formulas address things that the West are really bad at helping me with. We on the MS Highway, we don’t get to wave magic wands and make the MS go away… we’re called upon to deal with it in other ways. What those are, are the world’s special gift to each of us. Just like, y’know, life. You’re going to make it because that’s your nature. Remember THAT!
Nicole,
I will pray for the drug to work for you and also for peace and contentment. God Bless You and they all said AMEN!!!! Remember the power of music to remedy our soul .”It is well , it is well with my soul!” I love your blog !!
Nicole, the biotin trials (300 mg./day) have shown benefit for some with progressive MS. There’s no immunosuppressive effect. You could certain take it with any other MS drug. The MedDay trial results can be found on-line, if you are interested. Please keep telling it like it is.
i hope Lemtrada works for you! I have no idea how you always seem so positive in your blog. I know I’m struggling right now. I can’t imagine how I’d work through the struggle of finding a medicine that works on top of it all. I know this fight is not easy for any of us. I wish you the best of luck!
Hi Nicole, I am on my third DMD. I am now taking
Aubagio. Is it working? Not sure until I have another MRI scan. However, I continue to remain hopeful. I’m hoping that third time is the charm. I will also remain hopeful for you as well. This may be the one for you! Best wishes to you and everyone who is dealing with this thing they call MS.
i think we’ve all contemplated going meds free. i am down to symptomatic treatment – baclofen for spasticity, ampyra to gait, mycofenelate for immune modulation. not very intrusive, not difficult to manage, but i wonder how effective any of it is. good luck and keep in touch!
I am SPMS and have been for over 12 years. I do not take any of the MS drugs as they were not developed for at least 10 years after I became aware of my MS. I was alergic to steroids, so I learned my episodes would go away on their own…just take a little longer. I learned to manage around MS by avoiding what aggravated and brought on episodes. I was very bothered by heat, so I avoided heat as much as possible. I couldn’t handle aerobic exercise as it would raise my internal temp and I would pass out. When I started feeling heaviness or clumsiness when walking, I would get off work and go straight to bed…sleep helped me to avoid episodes. I did very well for 20 years…worked and even worked 2 jobs for about 9 years. Then I crossed into SP…no more episodes…just became gradually worse.
I am bringing this up because I have realized improvements even though in SP…and I know of nothing that is capable of giving people with SPMS abilities back that they have lost in this stage of the disease. I joined an MS study with Dr. Raymond Damadian and Dr. Scott Rosa almost 4 years ago. At the time my greatest disability was the loss of my eyesight. I could no longer drive because of loss of peripheral vision and kaleidoscope vision when I even slightly turned my head, blinding me. I had several other issues as well at the time. These doctors gave me back my eyesight as well as correcting several other issues…and it was done without medications. You can go to “fonar.com” and click on new developments with MS to find out more. Also, there is a documentary that will show on Jan. 28th on ESPN describing help that is being given to NFL football players because of the science involved.
Fingers crossed that your progression ends with this new drug.
I hope that you are able to take Lemtrada and that it works out for you! Hugs!
I too am spms. I have had a hard time with meds working, until my neuro put me on cytoxan. A chemo drug, used off label for autoimmune diseases. I have actually seen very positive results.
My neuro is very excited about this he’s drug, that will hopefully be Fda approved very soon
http://www.techtimes.com/articles/93370/20151009/roches-ms-drug-ocrelizumab-shows-promising-results-after-late-stage-trials.htm
What are your positive results?
I give you credit for hanging in there with doctors and drugs. I gave up on all that after 6 years on 3 different drugs. I’d just had enough of people “messing with me.” Haven’t been to a doctor or taken in 6 years and have no current plan to do so. I wish you much success with your new course of therapy.
Laurie I also have not taken any MS medications for 5 years and haven’t been to a neurologist in about 4. After having MS for 24 years and being on 4 diff shot therapies and never feeling better and having monthly solumedrol prescribed and a cancer treatment too I just had enough! To me and for my life…Less has been the best. I rely heavily on my relationship with God and my Faith is my number one priority. I do not trust the drug industry and I do not believe that the neurologists always have our best interests in mind. I have too have been used for clinical studies and prescribed orphan drugs and at one time took about 12 diff daily meds to manage my MS. I felt depressed, defeated overmedicated and sick. Today I take a med for fatigue…Nuvigil and one for depression/neuropathy Effexor. When I have fatigue I rest and the remainder of my symptoms I manage by eating clean, doing yoga or walking or trying to stay active and although my comment may not be well received…I deeply deeply trust my Father to deal with the rest as He promises He will throughout scripture. My relationship with Him has done more good for managing my MS and the fear than any other modern medicine has even remotely come close to doing. He tells us Not to worry about anything and To cast all our fears onto Him…so I have learned to do just that. I believe that when we chsnge our words and our thoughts that we can change our lives. Nicole we have to hang out soon. I think of you often and am adding you to my daily prayers.