The Merry-go-Round of Hope

“There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow.” – Orison Swett Marden

Although I try to rely heavily on holistic healing, I also have used pharmaceutical medication over the years.  During my 18-year journey with my MS diagnosis, I have tried several disease modifying drugs.   My first one was Copaxone, a daily injection that I used for 12 years.  It allowed me to have a fairly benign experience with the disease.  No relapses for 8 years and then just one in the next 4.  It is a very safe drug which is why my neurologist suggested it I am sure.  Many times, I thought about stopping the drug.  There were times when I thought “Do I even really have MS?”  I had no symptoms and of course wondered if maybe I was diagnosed mistakenly.  However, I always went back to my thought that if I found out I did not have MS and had been taking a drug for years that I did not need to, I would be angry at the doctors for that.  If I stopped the drug and had a relapse that I did not recover from, I would be angry at me.  I decided I would rather be mad at doctors than myself.  So, I just trudged on taking a needle every day and lived my life with MS being a small part of it.  Taking the needle was like brushing my teeth.  I don’t brush my teeth and consciously think I am doing this, so I don’t get cavities.  I just brush.  The needle was the same.  I didn’t think about taking the needle because I have MS.  I just injected the needle.

The drug worked great for me until I started having atypical reactions to it.  I ended up having to stop it due to the reactions and that my MRI showed activity, so it appeared to not be working anymore.  I then tried a drug Rebif that did not stop disease activity at all, so I stopped after a year.  The last drug I was on was Tecfidera which was an oral pill that I took twice a day.  Yes, taking a pill instead of an injection was lovely, but nothing comes without a price.  This new drug had several deaths associated with it.  12 years before, I never would have considered experimenting with my life that way.  But when disease rages on, we change what risk we are willing to take.  The hope that this might be the drug to slow down progression is too great to not try.  The good thing with Tecfidera, is that they know what puts you at risk of PML, basically brain leukemia.  I had blood work done once a month to monitor my lymphocyte counts because they knew that if the went below 0.6 you had to stop.  So, a few months ago mine reached 0.6.  Hope for improvement did not override my fear of death.  For that reason, I stopped taking Tecfidera in April.

That brings me to my next journey with medications.  There is a brand-new drug for MS out that is approved for RRMS (what I have) as well as PPMS a more aggressive type and it is the first drug ever approved for that type of MS.  Want to talk about hope?  Take a look at that demographic of people with MS for this drug.  It is a brand-new drug for MS, but it has been used for Chemo patients with cancer for 15 years in Canada.  So far, there are no deaths associated with it, but like I said, it is new.  The positives for it are that you only need to have an infusion once every 6 months and the results for efficacy of the drug are triple what they are for the other 15 MS approved drugs.  For that reason, I am jumping in with both feet.

I am scheduled for my first infusion on June 26th.  It will be a half dose, so they see how you respond to it and then the next half on July 9th.  After that, I don’t have to think about it for 6 months again.  The hope that this medication will improve, or at least slow down advancement, is what keeps me going on this medication merry-go-round.  Here’s hoping we can all find the combination of treatments that works for us.   Hope is a precious commodity when you are dealing with disease.  I aim to always canter on with the ride of hope.

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