As promised, I am carrying on with my fun journey of being diagnosed with Multiple Sclerosis. Unfortunately, when I was first diagnosed in 2002, there had not been oral medication approved or probably even thought of yet, so I did not have many choices. Like I had said in one my previous posts, my doctor strongly urged me to try Rebif because he had seen a lot of success with his other patients, so I did give him the benefit of the doubt.
I can remember the first time I gave myself the Rebif shot! It took me forever to get the needle into my skin only because I was so scared of what was going to happen and how it was going to feel. I remember I asking my mother to be at my apartment with me because I never thought I was not going to have the courage to do it by myself, especially the first time and I needed a little support. Shockingly enough I did manage to get the needle in but then had a hard time actually releasing the medicine because it was already burning like fire. All in all I think my first injection took me about 20 minutes to complete, but I was proud of myself when it was over because I actually did it myself! I can still remember how much the medicine burned as it was released from the syringe and told my mother I would never do it again because I hated every moment of it. That evening I woke up several times feeling like I had the flu because I was cold but sweating and my body ached all over. Even the next morning I felt like I was still sick so I called the doctor worried. My doctor told me it was very common to have flu-like symptoms with Rebif and before my next dose I should premedicate with Advil or Tylenol, as they would combat those negative side effects. Of course me being the patient I think every doctor dreads having had a lot of questions! I could not understand why a medicine that was supposed to be helping me would cause me to be even sicker and require more medicine. My goal was to take as little medicine as possible and they were only increasing what I had to take.
The next time I had to do the Rebif, I asked my mother to come over to my apartment and do the injection for me. I just could not handle pushing a needle into my skin knowing exactly how bad the medicine would burn and how I would feel the following day. Thankfully my mother was able to help me and do the injection for me. Afterwards, I did manage to do the injections myself for the most part. My husband knew what days I was supposed to do the injections and would remind me and encourage me to do what was needed.
Technically, I was prescribed Rebif for about two years but slowly stopped doing the injections on the days I was supposed to because I had too many bruises and ran out of injection sites that were the easiest for me to do. My doctor figured out that the medication was not working because I was having more issues arise but he did not know the real reason it was not working, so I finally told my doctor that I was not taking the medicine any longer and told him why. I explained to him that I was not good at doing an injection every other day, so he and I discussed different options. Unfortunately my options were limited to other injection based medications or IV medications and I was not comfortable with any of my options and needed time to think about what I would do next.
From my own personal experiences I know just how important it is to find the right disease modifying medication that works best for you. Back then, the diagnosis was still new to me and I was still being stubborn not wanting to face the facts that I needed to do something to slow the progression of the disease. I made bad decisions solely based on not wanting the illness to have any effects on my daily life and not wanting to admit that this illness was not going anywhere. It was a childlike mind thinking if I did not acknowledge it, there would not be any consequences. I went as far to tell my doctor he was wrong and I did not have MS and I was getting a second opinion. I did exactly what I said and got a second opinion from another specialist. Those were two bad decisions all in a matter of a few months. I stopped taking anything for the MS and went to another doctor that did not seem to have as much knowledge. I ended up having my first bad exacerbation which caused me a lot of weakness and dizziness and I ended up back with my first doctor. As terrified as I was about going back to the doctor I told was wrong, he was very understanding about my feelings. This was also the first time the exacerbation was bad enough to require IV steroids. There were a few other medications I tried before finding the one that was best for me, which I will get to in my next post. These posts are taking a little longer because they are all emotionally draining for me.
I do completely understand how hard it is when finding the right medication for MS, but it is really important to do your own research and give things a try with an open mind. I have tried a number of medications so please do not hesitate to reach out to me if there are any questions I can answer for you. Please keep in mind all my answers are only based on my own experiences as I do not have a medical degree. Considering I have gone without taking anything I do know it is not the best idea and I only want to help!
Thank you for visiting today and sharing any comments you may have. I will respond to all comments and emails as soon as I can! I hope y’all had a good Monday and I hope you are having a great evening! Much love and take care!!