Today I wanted to talk about an important part of life as a person living with multiple sclerosis, choosing your disease modifying, long-term, medication. Till recently, there were 3 types of medications to choose from, each of which work in slightly different ways. They include Beta-Interferons (Avonex, Betaseron, and Rebif), Glatiramer Acetate (Copaxone), and Natalizumab (Tysabri). As of September of 2010 a new type of medication, Fingolimod (Gilenya), was approved by the FDA and is the first oral form of a disease modifying medication for multiple sclerosis
So What Are These Medications? How do They Work?
Actually I want to take one step backwards really quick, because you’re probably asking, “why do I need to take these medications?” In order to answer this question I’m going to have to do a little recapping: with relapsing remitting multiple sclerosis (RRMS) you will experience periods of exacerbations and periods of remission. When first dealing with an exacerbation you will most likely be placed on steroids, the goal here is to eliminate your exacerbation. Now that you have gone into remission this is where the disease modifying medications come into play. The role of the disease modifying medications is to prevent you from having another relapse or to at least prolong the amount of time between relapses. They do not cure the disease, they simply modify the course of it.
There are three Beta-Interferon medications to choose from, Avonex, Betaseron, and Rebif, each of which have to be injected. These medications work at the “Blood Brain Barrier” level by strengthening the layer of cells that act as a filter to prevent harmful substances from entering the brain and spinal cord. This helps MS patients by allowing fewer harmful T cells (which cause damage to myelin) to enter the central nervous system (CNS).
Pros – Avonex only has to be injected once a week. Rebif is injected three times a week, and Betaseron is injected every other day.
Cons – Can cause flu like symptoms for first few months and are deep muscle injections meaning, they are injected into the muscle, which also means a longer needle…
Also known as Copaxone, Glatiramer Acetate works by making the immune response less inflammatory reducing the amount of damage that activated T cells cause to myelin.
Pros – No flulike symptoms and injections are subcutaneous meaning the medication is injected just under the skin or in other words, a much shorter needle!
Cons – Copaxone is a daily injection and can cause light skin irritation and possibly light scaring over time.
Known as Tysabri
, Natalizumab works by blocking T cells from adhering to the blood brain barrier so fewer T cells can enter the central nervous system (CNS). This medication is typically used as a last resort for patients who do not respond to Glatiramer Acetate or Beta-Interferon treatments.
Pros – Only injected once every four weeks intravenously.
Cons – Increases your chances of getting a rare brain infection that usually causes death or severe disability called progressive multifocal leukoencephalopathy (PML).
Gilenya is the first orally administered disease modifying medication for multiple sclerosis approved by the FDA. Gilenya works by decreasing the number of lymphocytes (T Cells) in the body by preventing them from leaving the lymph nodes.
Pros – Comes in the form of a capsule not a needle!
Cons – Because this is a new drug there are many side effects you may encounter but some of the major ones include increased chances of heart attack, lung, liver, and eye toxicity and increased risk of infection.
Which Medication is Best?
The answer to this question lies with the individual, before choosing a medication your doctor will most likely supply you with much reading material regarding these medications. Take the time to study each medication, their side effects, their clinical study results, etc.
But in the end what it usually comes down to for most people is a decision between the basic pros and cons listed above for each medication. Do you want to inject with a smaller needle more often or would you rather inject less often with a bigger needle? Would you rather deal with flulike symptoms or possible skin irritation?
How Did I Make My Decision?
For those of you who don’t know already, I chose Copaxone and have been taking the medication since September 16, 2010. It’s obviously way too soon for me to tell you how it’s working because I technically have not even got 100% through my first exacerbation so the steroids are still doing their job.
Anyways, at first I was a little scared of the idea of injecting myself everyday, so naturally I looked into the Beta-Interferons. I was immediately turned off by the flulike symptoms and deep muscle injections. I’ve always been very sickly growing up and I hate nothing more than flulike symptoms! The long needle sounded painful and scared me away as well… The trade-off of pros and cons just didn’t seem worth it to me.
I Then focused my research on Glatiramer Acetate, or, Copaxone. As I said before, I didn’t like the idea of injecting daily because I had no idea what it would be like but I did like the fact that there were no flulike symptoms associated with the medication. I’ve always had tough skin so I was not too worried about dealing with skin irritation.
At this point I was leaning towards Copaxone but I needed a tiebreaker, so I started researching how each medication actually worked “behind the scenes”. Because I had heard of an anti-inflammatory diet being good for MS patients, I liked the idea that Copaxone had a lot to do with the anti-inflammatory process. I felt like I could attack my multiple sclerosis with a stronger force if I had two “anti-inflammatory armies” working together rather than trying to use two separate methods at once (i.e. Beta-Interferon and anti-inflammatory diet which would both work for two different immediate causes).
The way I think of it in my head is like this: I would rather have one big army of men with guns defending my base than have half an army with guns and half an army with swords, it just seems more efficient to focus one or the other against my enemy, not a little bit of both. Now this is not based on any scientific evidence, this is simply my own common sense based hypothesis, so I don’t know how accurate or realistic this concept really is, the bottom line is that this is how I made my final decision.
Am I Happy With My Decision?
Yes, without trying to be bias, I’m very happy with my decision! The daily injections are not that bad at all! I have made it a daily, morning, habit, it only takes about 20 minutes of my day, and they really don’t hurt, in fact, in most my injection sites I can’t even feel the needle! The absolute only downside I have noticed so far is that my thighs tend to be sore for a day or two after injecting but that is only because I am so skinny! I have zero fat on my thighs so the medication is probably making it into my muscles… This might easily be solved by adjusting the depth of my needle, something I have to talk to my doctor about.
Which reminds me, I almost forgot to mention that when taking Copaxone you have the option of using an injection device known as the “AutoJect 2 Device”, this is a self injection device that makes injecting easy! You don’t even have to see the needle! You just push the button, wait 5-10 seconds, and you’re done! I’m sure most the other medications have similar devices as well but that is something you should double check before choosing a medication if you are nervous about manually self injecting.
to watch me inject myself for the first time or CLICK HERE
to watch my educational tutorial on self injecting.
What is My Personal Opinion on Fingolimod (Gilenya)?
I think the idea of an oral medication as an alternative to daily injections is awesome! However, this is a brand-new medication, I would not personally consider trying this medication for at least five years or so to give the medical world some time to do more testing and to learn more about the medication. By then I might have grown completely content with self injecting and if I am having good luck with my current medication then I probably would not risk switching to a new medication and risking it working less than my current medication. I just want whatever works best for me but if you are someone who is terrified of needles or reacts poorly to the currently available medications, than this might be your best bet! I would just recommend signing up for some kind of clinical trial so they can monitor you and so that they can use your information to help benefit the progression of learning about this medication, how it works, and how it affects people.
NOTE: As always I’m not a medical professional and hold no medical degree of any kind, I am simply a researcher with the intention of spreading knowledge, so please, always talk to your doctor regarding any medical decisions you are contemplating and if you come across any information you believe to be incorrect throughout my article please contact me at Mattalleng@yahoo.com so I can make whatever corrections are necessary.
Thanks for reading and I hope you enjoyed!