Today, I want to share my experience with MS DMT's, Disease Modifying Therapies. My neurologist immediately chose to put me on Copaxone. Copaxone 40mg is a 3 times a week injection. I had some bad reactions from my first few injections. The 5th injection immediately caused a reaction. This reaction was worse than previous reactions. The injection site immediately welted up and was red and angry. It was so tender and spread to the size of soccer ball. My neurologist felt I was having an allergic reaction and ordered me to stop the Copaxone.
A washout period, then comes an oral medication, Tecfidera. This capsule is taken twice a day. My body reacted to Tecfidera by feeling fatigued ALL THE TIME. I could easily sleep 18 to 20 hours each day. My neurologist stopped Tecfidera after 2 months because of the excessive fatigue and tiredness.
My third DMT was Plegridy, an injection every 2 weeks. After my injection of Plegridy, I was sick for 3 weeks. My neurologist stopped the Plegridy and we regrouped.
The 4th attempt at slowing my MS progression was with Rebif. Rebif is a three times a week injection. During the 5th week, I was diagnosed with an aggressive form of squamous cell carcinoma on my elbow. My neurologist stopped the Rebif immediately.
My 5th DMT was considered the closest thing to a miracle drug for MSer's, Ocrevus. Ocrevus is an infusion given every 6 months. The first infusion is given in two half doses two weeks apart. My 2nd half dose took as long as a full dose and I slept through it for the most part...they had to give more Benadryl than normal. After the 1st full dose, I was so sick that I hardly left home. About the time I started to feel better, it was time for the next infusion. My neurologist determined that we had to find a DMT that I could tolerate without being sick.
On to DMT #6, Gilenya. I had to have a heart work up to be cleared for Gilenya. My (new) cardiologist cleared me for this drug. I had to take the 1st dose at the infusion center. An EKG was done and I was again cleared by my cardiologist, then I was given my first pill. I was observed and monitored for 6 hours. After 6 hours, another EKG was done and the cardiologist on call compared the before and after EKG's and cleared me to go home. Almost 2 weeks after beginning Gilenya, I was tired ALL the time and dizzy. I sent an email to my neurologist. His MA called me back 2 days later with his response, stop Gilenya immediately. The EKG's that were done on my observation day showed an AV BLOCK, which could potentially kill me.
I am now on my 7th DMT, Aubagio. I have been on Aubagio for almost 2 months. My labs are askew (white blood cells, platelets, protein and imm gran abs), so my neuro is referring me to a hematologist before he stops the Aubagio. My hair is thinning, which is not a big deal to me. I can wear wigs and look different everyday.
This has been my MS Disease Modifying Therapy journey, so far. There will be more to come, my story is far from over...
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