Me Without Gilenya!

hope 2It has been a few days since I have posted anything. My body has been adjusting to the changes in my medicine. All in all things are going pretty well. I am still dealing with the pseudo relapse issues but I am remaining positive that everything will ease up soon!

First let me start by saying that I do not want anything in this post to influence anyone’s views of any medication. Each person tolerates everything from over the counter to prescription medication in different ways. The following has just my personal experience. 

After several failed attempts with finding a disease modifying medication (medicine that is designed to slow the progression the disease), oral medications were finally being released. Before I was able to start Gilenya, six years ago, I was required to do an EKG to make sure my heart was healthy enough to handle the Gilenya. I was also required to do blood tests as your white blood cell count is monitored carefully while on this medicine. My doctor explained to me that protocol was to only be on this medicine for two years continuously with no break, then come off of it for six months to give my body a break. I also had to have my blood work done every six months to ensure my white blood cell count did not drop too low. White blood count is supposed to be low while taking Gilenya but at that time could not be below 300. After two years, protocol increased the time limit to four years. Now my new doctor has informed me recently that it is safe to be on Gilenya indefinitely. cropped-believe

Please allow me to share my experience with Gilenya. Before starting Gilenya, I was dealing with leg and feet pain with the occasional “MS Hug”. I never dealt with severe back pain, sinus issues year round, elevated blood pressure all the time and trouble taking in a full deep breath. I went on Gilenya’s website just to see if there was any time limit to taking this medicine. Instead I discovered that everything I had been dealing with were possible side effects to the medicine. Of course when I voiced my concerns my first time at my new doctor’s office, my thoughts were pretty much dismissed. I am only seeing this new doctor because my other two doctors that knew my situation better have retired. During this appointment I wasn’t even supposed to meet the doctor just one of her Nurse Practitioners because the doctor had a full schedule. However, when I became adamant that the Gilenya was the cause of my issues the Nurse Practitioner brought the doctor in to meet me, basically she just needed reinforcements. They both said that side effects typically occur within the first few months, so it wasn’t likely the Gilenya that was causing my issues. It wasn’t until a few hours after my appointment when my mind was clear, I remembered that all the issues I shared with them did start shortly after I started the Gilenya. 

I went into my appointment knowing that I wanted to change my medicine and had an idea of what I wanted to switch to. I knew I wanted to stay on an oral medication so I did my own research prior to my appointment. I clearly said that I wanted to switch to Tecfidera but they told me it wasn’t strong enough for me. That alone didn’t make any sense to me because I am not even able to take the normal dose of Gilenya, which is daily, because it makes my white blood cell count drop too low. Now I completely understand doctors have a medical degree and  know what has been researched on slowing the progression of the disease but I know my body better than they do. I know my tolerance and comfort level with certain types of medication. So, even after I said that I wanted to try Tecfidera and do not want to do any infusion type therapy, the doctor was still pushing me more towards the new infusion medicine and deterring me from Tecfidera. Needless to say I left my appointment without making a final decision and way more confused than I was beforehand. 122311342.1 (1)

After about a month and a half of getting myself stressed and weighing all my options, I decided to discontinue taking the Gileyna. It has been two weeks since I stopped taking Gileyna and I have noticed some changes. The weather has not changed at all but my sinus issues have improved. I do not need to take sinus medicine every 4-6 hours. Plus, I am now able to take a full deep breath in without any struggle. I am still battling the back pain but I do hope that will end as well or at least ease up some. I suppose my back pain could be a result of lesions on my spinal cord but I prefer to have  a more positive outlook and think that pain will end!

Moving forward, the first week of September I will be starting Tecfidera. Considering I have done a lot of research, I know that if for some reason this medicine does not work I have other options. I am able to go back on Gileyna if I choose that route. But at this point, I am going to have an open mind with my new treatment plan!

As always I like to end my post with a few questions. Your comments are appreciated and very helpful. Is there anyone reading this that is currently on Tecfidera or has taken it in the past? Did you experience any side effects and if so what were they? Has anyone switched from Gileyna to Tecfidera and if so what were your reasons? Thank you so much for reading this and I hope you have a great weekend!

Hope for cureAlways, Alyssa

2 thoughts on “Me Without Gilenya!

  1. I enjoyed reading your blog. I don’t write as often but I hope you will take the time to stop by and read my thoughts sometimes. I look forward to sharing with you on this journey.


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