Making Difficult Decisions: DMT
Living with Multiple Sclerosis is a difficult journey to be on already, just from the symptoms, possibilities from exacerbation, and more. A lot of people (outsiders) don’t understand that those are just some of the difficult things we deal with.
However, there are some things that you don’t see a lot of in the graphics on Pinterest, quotes spread around Social Media, etc. And there isn’t a lot of ‘education/awareness’ on what I’m about to discuss either.
So, what am I talking about? I’m talking about making the difficult decision on medicating with a DMT (Disease Modifying Therapy). It’s not like it used to be, where there was 3-4 medications to choose between. Now we have close to a dozen different medications to choose from, varying from shots, infusions and/or oral therapy. These are one of the hard decisions I’m talking about. How are we supposed to know which medication to choose from?
Most of the information out there will really tell you how the medication is administered and how often. One thing that bothers me, is that there isn’t something that patients can actually look up, without having to dig… to see how these medications work, what their relapse reduction rate is, etc.
Now let me just tell you that I have always decided to medicate, rather than not. Because, I did take a ‘medication holiday’ when I was waiting for a new medication (Tecfidera) to be approved, and that turned out to be really bad. Even though it was only for a few months, I had a lot of new lesions come up from that little ‘med vacation/holiday’ that I took.
Now there isn’t just the ‘which medication should I take based off of how it’s administered and how often’ question… but there is also the factor of each medications side-effects that we have to take into account too.
That’s something I think that a lot of people that don’t have MS, don’t understand. That yes, even though we are medicating and trying to slow the progression of our MS, we’re still dealing with our symptoms caused by MS, and then the side effects of medications of the DMT’s as well as the symptom management medication. So as you can see, it’s not as easy as most people think.
So I thought I would share some personal insight on my journey being on DMT’s and how I chose what medication to be on, etc.
I started off on Avonex, which didn’t have an auto-injector when I was on it, like it does now. It is a once-a-week muscular injection that brings on flu-like symptoms. Avonex is considered an ‘interferon’ medication as well. I did very well on Avonex, in regards to handling the medication, flu-like symptom side effects, etc. However, after receiving an MRI, we came to find out that it wasn’t slowing down my MS the way it needed to.
So from there, I went on Tysabri aka natalizumab, which is a monthly IV Infusion. Now when I started on Tysabri, my testing for the JC Virus was negative, so I felt comfortable being on this medication, because there wasn’t really any side effects to it either. However, after 6-months I found out that I was JC Virus positive, which gave me a higher chance of contracting PML.
That was just something that really freaked me out at the time, so I decided to get off of it, and try out Copaxone (glatiramer acetate), a daily shot given subcutaneously (under the skin). I did really well taking Copaxone for a little while, but then after about 6 months, I seemed to have developed injection site reaction. Not just a ‘normal’ reaction, of just skin irritation, but it was a reaction I had that lasted over a week. I so decided to discontinue Copaxone. (By the way, this was before Copaxone was available in the less frequent dosing.)
So, after Copaxone, was when I had my little ‘med vacation’ that I mentioned before. I was waiting on Tecfidera (dimethyl fumarate/BG12) to be approved by the FDA. Once it was finally available, I got on Tecfidera and did very well on it. The side effects that I had only lasted maybe 3 weeks. I really enjoyed the medication, especially since it was an oral medication, because it didn’t give me any lasting/major side effects. However when I had my MRI check-up, it seemed that Tecfidera wasn’t the drug for me, because it didn’t slow my progression at all.
So after a long talk with my neurologist, and my family members, and really going over for the ‘risks & benefits’ for each medication, I decided to get back onto Tysabri. But why? I had already been on it, and I’m JC Virus positive, so why would I get back on Tysabri? Well, as many of you have heard, they have come out with a JC Virus Index Test. By getting your blood drawn, it will also test your certain ‘level’ of the JC Antibody, and that can correlate to your ‘risk level’ of contracting PML. Which, when I had my JC Virus Index Test done, I was below a 1, and that’s a very low chance of contracting PML.
However, we are still monitoring closely for PML. MRIs every 6-months instead of annually, as well as getting the JC Virus Index Testing done… There are a lot of precautions being taken in order to make sure that I do not contract PML. (Now, remember… nothing is 100% guaranteed). However, it’s better to have some sort of idea of the risk, rather than not know completely.
You can read more about Tysabri and it’s side effects by clicking here.
So I’ve been on Tysabri now for a little over a year, and I have had NO new progression. When my JC Virus levels started to rise, we kinda spaced out my infusion times. They were every 4 weeks, like most people do. Then we went to 6-week intervals for two times… and now I’m on every 8 weeks. And it’s still working well. I will for sure keep everyone updated on this as time goes on.
But I just really wanted to point out that for one, not one medication works for ALL patients living with MS. For another, when you are looking at the differences in medications, trying to make a choice. When I do this, I don’t just look at the convenience and administration of it, I also look at the relapse-reduction rate of each medication.
If you want to learn more about each medication, you can ask your Neurologist for some information comparing the medication. MSAA also has a “S.E.A.R.C.H. Program, in regards to DMT’s for Multiple Sclerosis. To find out more, click here. You can also view the MSAA Treatment Chart, as well.
I also found a PDF posted by the National MS Society, along with many other MS organizations a part of the MS Coalition. So if you want to look at this document in full detail, click here. (The chart I’m referring to begins on pg.14) But let me give you a run-down. I’ve also listed below the branded names, not the scientific names that are listed in the chart. (These percentages are based off of an annualized relapse rate vs. Placebo – for a two-year period.)
- Self Inject
- Intravenous (IV)
Alright, that’s enough science talk with me for now. I’ll try to give more insight on this topic of difficult decisions, not just for medication though. So stay tuned for that.
Have you ever experienced a "weird" symptom and wondered if others with MS have experienced it too?