I am drug free!!!!

I am officially drug free.  Over the years, I have been on a steady regime of different drugs to slow the progression of my disease.  Notice I said slow the progression, not cure.  There was no cure offered.  The funny thing I have come to learn is, even with the drugs available, scientists really don’t know how they work to help stop relapses in MS patients and can’t prove that they actually slow the progression of this disease.  So good riddance to all the drugs and drug companies who peddle them.  I am off on a journey to hopefully stop this dreaded disease and if I am successful, I won’t need them anymore.  But there was a time I did or at least thought I did.

When I was first diagnosed with MS, there were not a lot of treatment options.  There were basically three drugs being used to “treat” Relapsing Remitting Multiple Sclerosis and none of them were very pleasant.  In fact all three of them were injection based medications.  Two were subcutaneous injections and one was intramuscular.  There was no way I could see myself being able to inject a drug deep into my muscles.  Thankfully I did not have to.

I was given the “latest and greatest” option Rebif.  Rebif is an interferon based drug given subcutaneously (under the skin)  three times a week.  I was told it would help to “manage my disease.  It would not cure me,  but would hopefully slow down the progression of disability.  Given the limited options, I really had no choice.  I either took the drug and hoped to slow this disease, or I did nothing.  I did not see doing nothing as an option.

I really wasn’t sure I would be able to “stick” myself.  Because the drug companies want you to take their drugs, they make it easy for you.  This company has an army of nurses they dispatch to your house to teach you how to take their medication.  In my case, the nurse even walked me down the street to the drug store to purchase some Tylenol to take prior to my first injection to help with any side effects.

When we got back to my house, she had me practice jabbing an orange with the syringe.  I really was terrible at it and wanted to give up.  It turns out, I was not alone because the drug company had developed an auto injector to help people more easily take this medication.  You simply place the syringe inside the device and remove the cap.  Place the tube on your skin and push the button.

The auto injector seemed simple enough, but it was not without its drawbacks. It was automatic but, you could not adjust the flow of the medication.  This particular medication has a tendency to burn when you take it fast.  I later learned that if I just jabbed myself with the syringe, I could dispense the drug as fast or slow as I wanted.  So after years of taking this medication with the auto injector, I did learn how to “stick” myself.

It happened one night when I did not have my auto injector with me.    I now had to decide if I was going to take my medication the old fashioned way or skip it completely.   I took out the syringe and starred at it.  I choose to skip it for the night.  However, when   I went to put the cap back on it fell on the floor!  I now had two options, 1) I could  suck it up and stick myself or 2) I could throw out the medication.  Since this stuff was very, and I do mean very expensive, (at $50,000 per year), I opted not to waste it.  After I got used to doing this it really wasn’t a big deal but it did take years for me to get there.

After years of taking this medication, I started to have relapses.  I went to my neurologist and was tested for possible antibody development against this drug.  Sure enough, I had developed antibodies against it and it was not working for me.  Thankfully, in the years since I was diagnosed, there were many new options on the market.  One was an oral medication.  I was thrilled at the prospect of not having to use a needle and did my research.  I was given a choice and I chose Techfidera.

Three years ago I started taking Techfidera.  This is a pill and I took it twice a day.  Seems simple enough right?  You would think that the girl who used to have to stab herself with a needle three times a week would be vigilant about taking this little pill twice a day.  Well I’m here to tell you that it really is easy to forget.  Again, the drug company has anticipated this problem and came to the rescue.  They give you a pill box with 14 slots. It is marked for each day of the week and has two slots for each day.  This box is designed to help you remember if you have taken your pills and it is solid so no light gets in.  Light is bad when it comes to Techfidera as it will ruin this medication.

I have to say, it really was liberating not having to stick myself all the time and I really was excited for this new therapy.  It did however have some issues.  I was told to expect things like flushing, bowel issues and vomiting.  Fun right?  I really didn’t have any issues at first, and even when I did get sick (and I did get very very sick to my stomach) those episodes were rare.  But this drug like the others was designed to slow the progression of the disease not cure me.  And like all the other drugs, there really is NO PROOF that it actually works!

HSCT is the only scientifically proven treatment to stop Multiple Sclerosis in its tracks.  I wish it was available here in the United States outside of clinical trials but it’s not.  So now I am just two weeks from my HSCT adventure which I hope will give me a new chance at life.  As of today, I have completely stopped taking any MS medications.  I don’t miss them and I hope to never see them again.