27
Feb 2015

Thanks and an Update!

Thanks and an Update!
2 comments
First of all, I would like to say thank you to everyone for their notes of love and encouragement for me! I am so blessed to have such an amazing group of family, friends and acquaintances in my life!

This morning Casey and I met with my doctor for just over an hour. (Side note - how awesome is it that he would take that much time to talk to us and on a day that he doesn't usually see patients?!) I misunderstood the other day, but found out today that the 6 lesions that I have now are ALL active! Yes, I'm a little taken back by that, too! Anyway, I did get my steroids pills and oh my, I am taking a lot!! The doctor was going to give me IV steroids for the 5 days, but we are scheduled to go on a mini vacation this weekend so I can't do those this time. (Great timing on the vacation though!) Taking that medicine should get me better faster in regards to the symptoms that I have now.

As far as the next treatment, because I obviously stopped Copaxone, we talked about 3 different options. Tysabri, Lemtrada and chemo! Here's the short version on each one:

Tysabri- this is the monthly infusion that I was on before that made me feel like a normal person! I wasn't as tired and I had no lesions for the 18 months I was on it. Risks: PML (fatal brain infection), but don't freak out! The longer you are on the medicine the greater your chances for developing this. I took it for 18 months and if I would start again, I would basically pick up where I left off (starting at 19 months). It's a very serious concern. However, I would still be getting an MRI done every 3 months and if anything hints at PML I will immediately stop the medicine and they have something that will flush out my system getting rid of Tysabri. My doctor has not had any of his Tysabri patients develop PML. He did tell us about a colleague that has had 6 patients get PML, but after flushing their systems they have all been fine. So, there's some good news about it.

Lemtrada- this was recently approved by the FDA although it has been used on MS patients for years now. It was actually initially developed to treat some kind of leukemia, but has worked well for people with MS. The cool thing about this one is the first year you have an infusion for 5 straight days and you are done. The second year, you do 3 days and you are done! After that you are pretty much done taking the medicine and people have usually been relapse free for 3-5 years after stopping treatment. However, I was way overwhelmed with the side effects on this one! Could cause problems with your kidneys so blood work is needed every 3 months, could cause thyroid problems so blood work every 3 months, could cause bleeding issues so steroids would be given if needed, the majority of patients get itching and hives during treatment so steroids would be given as a pretreatment, and I don't remember what it was, but because of something I would need to do a blood test every month for an indefinite amount of time. We haven't made an definite decisions, but I can say I have my reservations on this one!

Chemo- I don't remember the exact schedule, but I would be given a high dose for several months, take a break, another several months, take a break, not as many months, break, etc for the rest of my life. I won't even go into the risks for this because we have basically tucked this one away in our back pocket for a time, if needed, way, way down the road. ;)

Keep in mind, none of these therapies are first choices for MS patients. These are extremely powerful treatments with some potentially serious side effects that are taken when all the other treatments have failed to work.

My stance is still the same as yesterday. I am trusting in The Lord for His guidance with a smile on my face! Again, I will keep y'all up to date on the days to come!

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