Has anyone started on Lemtrada? I was so happy when it got approved but at Dec. neuro appt Doc said they were only using it as a last ditch effort, even though they participated in the trials. I saw the head Doc today and after going through the pro's and con's, percentages of this and that, he said he would leave it up to me to decide. I've been reading everything on can from people who have done it but I haven't seen anyone on here so just curious.
sorry I don't recall what other therapies you have tried for your MS to date. Lemtrada is a drug with some serious life-threatening side effects that can extend beyond the treatment, such as melonama, bleeding disorders, thyroid issues including cancer as well as, according tho the prescribing information insert, 71% of patients on the drug have infections with some having the potential to be fatal.
I hate to sound so negative about this drug but the above comments are based on the prescribing information. Granted all therapies have some risk of side effects, but this drug seems to have more than the usual risk of harmful side effects.
I don't mean to discourage you if this is what you and your doctor decide this is the best course of treatment. I wish you luck trying to make this tough decision.
Has rituxain been considered? It is used in the treatment of rheumatoid arthritis as well as hard to treat MS. It too is a chemotherapy agent but seems to have a safer side effect profile.
I have researched the heck out of this drug since before it was approved. Ive done Copaxone, Gilenya, and currently Tysabri, and nothing works. I'm on discussion boards of people who were in the trials and ones who have done it since Dec. and the results have been amazing so far. There have only been a couple who posted that were less than thrilled, mostly due to side effects or not seeing any changes yet, but 98% of the posters have nothing but positives so far.
My clinic was part of the trials and when I met with the doc on Tues. we went thru everything. Yes the risks are there, as with any drug, but you are required to do monthly lab work for at least 4 years, and skin checks yearly. As long as you can commit to that, any platelet, kidney or thyroid problem can be caught AND treated. Sure it would suck to develop a thyroid problem, but what's one more pill? Skin cancer -I live in Florida, its already increased, I dont know how many patients my clinic had in the trial, but my doc stated that 100% of their patients that have done Lemtrada so far (trial and after) have seen an improvement in their existing symptoms.
Now the goal of the drug is to completely wipe out the immune system and let it rebuild to rid itself of the myelin attacking cells, which yes will leave you open to infection for a while if not careful, but if this can stop MS in its tracks, even if it didn't improve any of my symptoms, I'll take the risks.
I did ask my doc if any of the chemo drugs were a better option, or if there was anything in the works that I should consider instead, and he said there was nothing better than Lemtrada and nothing in the foreseeable future that could compare. He said they didn't start putting people on it in the beginning unless an absolute necessity because infusion sites were limited since they have to be certified to administer it.
I'm currently reading up on it all. I've failed on Copaxone, rebif, tecfidera, steroids, Tysabri, and now gilenya.
I'm really concerned with the possibility of cancer, and kidney disease. I'm only 38, but I wasn't exactly an angel in my younger years. My body has had so many drugs pumped through it... How much more can my poor organs take!?
I'm considering going dmd free, but want to make the best informed decision I can. Looking for people who have done it or currently on it.
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