First time with Rebif

journey continuesAs 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. ThatRef 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 Unknownacknowledge 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!!

Love 2

Always, Alyssa

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About Positively Alyssa

I was diagnosed 16 years ago, when I was only 19 years old, with Relapsing Remitting Multiple Sclerosis. I had gone to my eye doctor because I had lost vision in my left eye. Prior to my appointment, I had prepared myself to have the doctor confirm that I would be blind in my left eye and that was all. Never in a million years did I expect to hear the doctor tell me that after consulting with his colleagues, that I need to go for an MRI that day because they were thinking that with my symptoms that I had MS. Just a couple hours later I went to get the life altering MRI. I remember that phone call like it was yesterday. My eye doctor called me from his home at 9:30 at night to confirm what they suspected, I in fact had MS. He immediately referred me to a specialist he knew and I was able to get in to see him that same week. Luckily, after a round of steroids, my vision came back in my eye just leaving me with leg pain that would continue to be part of my life. Through the years I have tried numerous different medications that are meant to slow the progression of the disease down. I was never good at the injections and it wasn't because of the needle, it was because the medication burned like fire going in. Still after all these years I still go through my battles of denial, anger, frustration and sadness. However, I have always said that I would NEVER allow MS to control my life but I would control the disease. For the most part, I have been pretty successful with that. I mean we all have our bad days but it doesn't make the situation any better. With this blog I am hoping that with my experiences, endless amounts of research and a powerful fight i me that I can not only help others going through this but that I can learn from others as well. Living with the ups and downs of MS can be challenging but the power of the mind can beat anything that is thrown our way!
This entry was posted in Healing, Medication, MS, Steroids. Bookmark the permalink.

15 Responses to First time with Rebif

  1. So, are you receiving any medication now?

    Liked by 1 person

  2. Very interesting reading Alyssa, I think it’s must be common for patients to query medication, I know I’ve done it myself only to regret it later. We have to surrender ourselves and trust sometimes. 🙂

    Liked by 1 person

  3. Survivors take another step! You’ve taken many in the past months. Only you can hold you down, Keep moving fordwad, you’re well on you way.
    Hugs

    Liked by 1 person

  4. Looking back on what you have been through and reliving those feelings is exhausting as hell isn’t it. I do think it’s healthy though and I am glad you are doing it. (I felt the same way while writing about my diagnosis) It did help me to relive the experiences because knowing that I was able to survive so much already, has made me feel stronger today.
    I don’t know much about Rebif. Is it every other night like Betaseron? and when they say mild flu like symptoms….MY ASS!!! I ran a fever of 103 with chills every other night for almost 10 years while on that. NO TY! I can remember “skipping” nights to, because I couldn’t find a non welted spot and I didnt have the energy to be up sick all night…..
    heh… I guess that makes us pretty damn strong huh?
    I am glad gilenya is working for you and that you are past you flare 🙂

    Liked by 1 person

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