I decided to check the site out again for any interesting conversations and realized that a further dose of reality might help all interested in taking Lemtrada or more importantly considering not taking anything at all. It is a safe bet that I am older than most of you and was in better shape (won 3 national racquetball championships in the years leading up to my diagnosis in ’05) so let me confirm for the doubters that MS is a deadly serious disease and don’t let anyone gloss over that fact talking about fad diets and supplements. The very nature of RRMS make it an easy disease for people to become confused about so called “remedies” and even legitimate Disease Modifying Drugs. Google “MS” and “nerve pain” and you will see that at least 50% of MSers experience chronic severe pain at some point during their disease course. It’s hard to imagine that there would not be pain given the nature of MS leaving plaque covered lesions on your brain and spinal cord. You don’t necessarily just end up with a limp and need a cane or something. I am living with all of the problems that others discussing the virtues of Lemtrada have lived with and more. Chronic and severe pain is a constant companion of mine that started about 4 years ago. I have taken Tysabri and Tecfidera (during the trial) and have been on Gilenya since it was introduced in 2010. I subsequently researched available therapies and learned about Lemtrada. I tried then to enter a Lemtrada trial and missed out. I met a patient who was fortunate enough to be in the trial that experienced the same kind of remarkable results that have been shared here in this blog. Everybody that she knew experienced the same. The question has been asked here why isn’t everyone on Lemtrada. I have learned that 1) There is a lot of money involved 2) Subsequently and cynically there are a lot of politics involved. 3) Choosing MS drugs is an exercise in weighing risks and rewards. You can reduce the risk by taking a less effective drug with the hopes that it buys time to take something better that may be in the drug pipeline. The problem with that approach is the erratic and sometimes silent course that MS can take leaving sudden major disabilities, not necessarily incremental and predictable damage.
The FDA has finally approved Lemtrada here in the US and I am scheduled to receive therapy in a few weeks. I did not choose to go offshore for treatment and blow through $100K with the FDA approval imminent here. I signed up tonight for this blog as a civic duty to dispel thoughts that Lemtrada is not safe and that no treatment at all is a plan. I am horrified at the thought that an essentially able bodied patient would choose no DMD to combat an illness that most certainly will overtake your body’s recuperative powers at some point. What sudden disability are you prepared to live with? I read all of this talk about “fear of needles” and other nonsense that revealed the necessity for a “Bull in a china shop” like myself to shed more light on a frightening subject. The truth is the safest drugs are the oldest and least effective injectibles. The oral drugs are great innovations and come with varying degrees of effectiveness and side effects. Tecfidera has been linked to pml just as Tysabri which is the monthly IV. I found Tysabri to be very effective at halting my MS and even reversing symptoms. The thinking here is that if you use a strong immune suppressing drug like Tysabri, then the body has a better chance of recovering. I unfortunately could not tolerate Tysabri very well, and I (like you are now) was not certain where MS would lead me without something strong enough to stop the creeping and sometimes unnoticeable damage that continues with MS. I had always been healthy and did not like the sound of needles either. I had no clue the seriousness of MS, much less the consequences of no action. I lived in a world of only taking vitamins if anything and being extremely fit was a priority. My world now is no career (was a software engineer and entrepreneur), 10 different medications a day, 5 of which I take every 3 to 5 hours depending on ridiculous factors like the weather, Sometimes I am bedridden with severe fatigue. Other times I cannot sleep at all. I always only sleep 3 to 5 hours before awakening in pain needing more medication. Sometimes the pain is crushing like a truck has run over me. Other times, I wake up feeling like my legs are on fire. I take 3 meds for just nerve pain and have tried many others and different combinations looking for better results. This is my life now and I know it can get worse. I experience worse intermittently. Lemtrada by all accounts is the best treatment currently available that was described by one of the trial investigators as being the closest thing to a cure that we will see for years, and that the trial comparator drug (Rebif) looked like a placebo next to it Lemtrada comes with no greater risks than many of the other DMDs that are available and I have taken and gladly take given what I have learned about MS. I will gladly take 8 days of Lemtrada for a chance at not ever needing another MS DMD and potentially halting and even reversing my disease. If me being “harsh” in this blog convinces even one of you to seek out adequate treatment so that you don’t have to learn what I learned about MS, then tonight has been a raging success!
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