Today, I want to start by thanking my family, friends and fellow bloggers for reading my posts and following my site. I truly appreciate all the support while starting this new adventure in my life. While my goal is to post positive and inspiring entries, I do also plan to over time, share my continued fight with Multiple Sclerosis. Granted, this is a daily battle of ups and downs but I never plan to allow this disease to defeat me! This entry is very personal, heartfelt and a little difficult to share. Please let me also tell you I am not a Physician nor do I do anything with the medical field, all the information I share is only from my personal experiences.
There are already so many different types of medications that are available to slow down the progression of MS. These medications now do vary from subcutaneous injection to intramuscular injection to infusions to an oral pill form. It can definitely be a very frustrating and overwhelming process trying to find the disease modifying treatment that works best for you. Each individual has a different body chemistry, different tolerance levels and different challenges all together, so it almost seems like a trial and error situation with medicine.
I will be honest to say, I wasn’t the best patient when I was first diagnosed going on 16 years ago. But, I was so young, stubborn (which I still am that), scared of what my future held and in complete denial. I didn’t want to have to inject myself with a needle at all. However, my doctor at that time, who I did have trust and have faith in his abilities, wanted me to try Rebif. Rebif is a subcutaneous injection to be administered three times a week. I was on Rebif for several years but I always complained that after doing the injection I felt like I had the flu, plus the medication itself burned like fire while going in. My doctor did suggest that I try “pre-medicating” with things like Advil to counter the symptoms I was experiencing, which I did follow his instructions. But in the end, I started missing a lot of doses, so my doctor suggested we try something different that may not have “as many” side effects.
I went along with my doctor’s advice and switched to Copaxone. Copaxone is again another subcutaneous injection to be administered three times a week. I know you are probably wondering why in the world I would switch to another injection medication but I did this because my options were very limited at that time. I ended up having issues with this one as well. See, I told you I was a difficult patient! For starters, it was very obvious that I just was horrible at giving myself a shot but Copaxone also gave me bruises at each of the injection sites. I bruise easily on a good day and bruises take forever to heal for me. I told my doctor that I continued to run out of injection sites because they all had huge bruises on or near them so I was skipping doses. Needless to say, my doctor was becoming concerned because he wanted me to take something to slow the progression down, so again he suggested trying something different where I didn’t have to inject myself.
At the time of all of this, there had not been any oral medications available yet so he suggested I try Tysabri. Tysabri is a monthly infusion that requires going to a specialty clinic so nurses are able to monitor you while the medication is administered through an IV. I thought this was going to be great because I was still getting the medicine that was needed but I didn’t have to stick myself with a needle! But again, I didn’t tolerate this medicine well as it made me very sick for several days after the infusion. I only remained on Tysabri for two months when my doctor agreed that this was not a good option for me. It is pretty clear that I do not tolerate medication well.
Finally, at this time oral medications were being released. Again, trusting my Specialists expertise on this subject, I started Gilenya. Honestly after sharing possible side effects with my family, they were concerned but I decided to try this anyways. Gilenya is an oral medication that is “normally” taken once daily. Now there are several things to do prior to starting Gilenya, like getting blood work, getting an MRI done and doing an EKG to test your heart function. The first dose of this medicine must be taken at the doctor’s office so you can be monitored for any complications for six hours. I was also informed that protocol for Gilenya stated you could only be on this medicine for two years then would have to come off of it for a short time, I guess this is to give your body a break from the strong medicine. This was all six years ago and now protocols continue to change!
During my first blood test a few months after starting the Gilenya it appeared that my white blood cell count had dropped to a dangerously low-level. I was very nervous because I was getting sick a lot and was planning my wedding! Instead of just taking me off of this medicine my doctor suggested that I only take it four times a week, which I did. After several months, my white blood cell count became as normal as it can be while taking Gilenya. Technically, they want the white blood cell count to be low but there is a limit they allow. I am currently ordered to take Gilenya five times a week.
As you can tell I have tried numerous medications to help slow down the progression of this disease. To say the least it has been extremely discouraging and frustrating at times but I refuse to give up hope! Considering initially the protocol for Gilenya was only two years and everything seems to have changed to a case by case basis, I might be getting a little concerned. Over the six years I have been on the Gilenya, I have noticed several changes and issues that are actually listed on the Gilenya website as potential side effects. I have voiced my concerns with my Specialist that it might be time to try something different with the hope that my additional issues will cease to exist but I am not sure what to switch to. The options I was given do not seem like good options as side effects are extremely dangerous. Please leave a comment or send me a message as to what medicines you have tried and what has worked and what hasn’t. I sincerely appreciate your opinions and suggestions especially considering right now I am not sure what to do……
For anyone reading this that is not following my blog already, please follow this as I am trying to build my site so I have additional abilities to reach people and hopefully help them and learn from their experiences. I want to be able to make a positive difference with the struggles people are going through. I will continue to try to make an entry every other day with updates as to how I am doing, different things I have experienced, motivational topics and so much more….
Thank you for visiting and thank you for your support!
Staying positive and strong, Alyssa
I’d been putting off taking medication for years but have just decided to try tecfidera. Mainly because it is in tablet form. Most people I’ve talked to seem to do ok on it after the first couple of weeks so I’m going to see how I get on with it! xxx
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Do you mind if I ask, how long have you had MS? When you were not taking any medication did you have a lot of flare ups? I am asking because I am thinking about coming off of medicine for a little while to give myself a break. I am a little scared because I don’t want to have flare ups and any additional damage. I really appreciate your comment!
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Just over 3 years now. It was very active for the first 6 months leading up to my diagnosis but I then had 2 years of no relapses or progression at all. I did do a lot to manage stress, really healthy eating etc. I then got stressed and over tired at work over a couple of months which led to a relapse at the end of last year, so I know what caused it but it’s made me reconsider medication. It’s all such hard decisions though! xxx
Managing stress is where I have a hard time. I am the type that worries about everything and have a great deal of stress. I do not know how to manage stress most of the time. Doing this blog has helped because I have a strong passion for writing. Truth is I would like to be able to manage my stress and eat healthy and not take medication! I think life and work can be SO stressful and it is hard to eliminate it sometimes. I can’t thank you enough for your response! I actually asked my doctor about tecfidera and I am considering that. Will you let me know how this makes you feel and if there are any crazy side effects, please?
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I’m a worrier too. And it’s just completely impossible to live life without stress. I would prefer to carry on without medication but it’s something I feel I need to try. Just to see how I get along with it. 🙂 I will let you know. It won’t be for a few weeks as I’ve just told the nurse and she said about 4 weeks, but I will let you know then. 🙂 xxx
I couldn’t agree more that it is impossible to live life without stress. I really appreciate you communicating with me. I am still learning about blogging and really liked your site. Is there a way to chat with you about how you have managed your site and this medicine thing that isn’t on this site? Like can I send just you a message? Thank you so much for your help! It is amazing how helpful it can be to communicate with someone that has MS and understands the struggles!
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Your sites really good. WordPress in itself confused me for weeks though! It does help so much connecting with other people who understand. One of the amazing things about the internet. 🙂 My email is email@example.com xxx
Thank you so much. I agree WordPress was kind of confusing. I will probably email you shortly! You have been very helpful! !!
I have been working with people who have many different kinds of movements disorders including MS. They are getting good results from using THC (cannabis) to control their muscle spasms and CBD to control their stress and anxiety. To a person, they have declared they have gotten better results using cannabis instead of traditional medications.
Thank you for your comment! I have actually heard great things about going that route. The only issue is the legal side. It unfortunately isn’t legal in my state. I do know that doesn’t really stop people though!
I just started my blog a month ago. I really want to be able to help others as well as learn from people, especially those with knowledge as you have. I am still working on building my network and building more followers. Your comment really was fantastic!