If it Ain't Broke, Don't Fix it
You may have heard the term before, “if it ain’t broke, don’t fix it.” Usually it’s pertaining to something in our lifestyle, home, etc. Basically meaning, if there is nothing wrong with it, don’t change it. So why am I saying this phrase now? And how does it have ANY relation to MS?
As a lot of you may have seen, heard and/or read, there have been a lot of new medications made available in recent years. For example, when I was diagnosed in August 2010, there was Avonex, Betaseron, Copaxone, Rebif & Tysabri. Now, there were probably some other medications used to treat multiple sclerosis, but I named the top ones that I heard about after being diagnosed. Used to be, there was just the “ABC’s” meaning Avonex, Betaseron & Copaxone. Since I was diagnosed in late 2010… There have been 5 new medications approved by the FDA, but there have also been changes in administration of an existing medication, dosing changes, etc.
As some of you may know, I’ve tried a handful of MS medications… but I wanted to make it clear as to why I have had multiple changes in my disease modifying therapy. So let me just say that, I started off on Avonex… and I did well on it, but it wasn’t slowing my progression in any way, so I went to Tysabri. This was in 2011… and the JC Virus Index testing was not available at that time. So when I came up JC Virus positive on my routine labs, I decided to try a different medication, where I was more comfortable with the risks, side effects etc. (For more info about the JC Virus and PML, click here. To view more info about Tysabri, click here.)
I then went to Copaxone… and at that time, the only available dosing for Copaxone was once-a-day injections. I did well on Copaxone as well, but a few months into the treatment, I developed a reaction to it, and had to discontinue Copaxone. I decided to just wait for Tecfidera to be approved, because it was going to be happening very soon, and I didn’t want to have to worry about doing a “clean-out”… flushing my symptoms of drugs, which is basically waiting a period of time to make sure the medication is out of your system.
So I went on Tecfidera once it was FINALLY approved… and I did very well on it. I didn’t have severe side effects. The side effects I did have, pretty much went away after the first month of taking it. I was finally very happy about the medication I was on, with little to no side-effects once my body adjusted and then studies had shown that it did really well in slowing MS progression. (Article Post: Taking Tecfidera)
I went in for my routine MRI, and it seemed that Tecfidera wasn’t working for me the way it should have… so I made the decision to return to Tysabri, seeing as they now had the JC Virus Index Testing, which monitors your JC Virus ‘level’ that correlates to the chances in getting PML while on Tysabri.
So, as you can see from my in-depth explanation, every time that I made a medication change, there was something wrong with how I responded to the medication or the risks (at the time) were greater than the benefits, for me personally
But my point here is, I didn’t change medications at any time, just because there was something new out there. While it’s exciting that there are more and more medication options becoming available to those with MS, there isn’t just ONE medication that works for ALL of those with Multiple Sclerosis. (Read more about my article describing how no two patients are the same, MS Snowflake.)
As you may know, I attend major MS conferences with MSWorld and Dr. Daniel Kantor, and I get to speak with numerous medical professionals while I’m attending these conferences. And it seems to me that most of them believe that if there is nothing wrong with the medication the patient is currently taking and it is managing their disease positively, then there shouldn’t be a reason to change. Now, when I talked to some neurologists that were from the South like myself they pretty much said or directly quoted, “If it ain’t broke, don’t fix it.”
The way I see it, if you have something that is keeping your MS progression under control, is it worth the risk to change to something else, just because? I know that the answer is different for everyone. A lot of people want to go to an oral medication because they’re tired of injections, or something like that. I can completely understand that.
But if you’re comfortable on the medication you are taking to help slow your MS progression and have no problems with the administration of it, why would you want to change? It has been said by numerous medical professionals that they have not found ONE specific MS disease modifying therapy, that works with the whole entire Multiple Sclerosis Population.
If you aren't on any medication for your MS, I completely understand. Some people do well managing their MS without medications, others don't have any medication options left unfortunately. But for me, personally, I've had a "Drug Holiday" as I like to call it, and it wasn't good for me AT ALL.
So why am I rambling on about this? Because I know that a lot of us living with MS reach out to others that are living with MS for opinions, insight, etc. So I want everyone to keep in mind that, just because one person you speak to had a horrible time with one certain medication, doesn’t mean that YOU will. We are all different; MS affects each and every one of us differently. Yes, we have a lot in common symptom wise, but our MRIs are not all identical.
I understand that we all want to discuss certain medications, treatment options, etc. with one another and that’s amazing. We need to be there for each other. But I’m not going to make a decision about my MS care based on another MS patient’s experience. I will, however, keep their opinion in mind when I discuss things with my neurologist, nurse, etc.
I know that not everyone will have the same viewpoint as I do about this, and that’s okay. We are each our own person and we each have our own circumstances surrounding the decisions we make in regards to our plan to battle MS.
Anyways, I wish everyone the best! Until next time…
How many specialists did you see before finding "The One"?