To Take Meds or Not To Take Meds....
New medications can make a world of difference in the treatment of any disease. There are scientific breakthroughs every day and they are learning how to better treat illnesses all the time. MS is unique because unlike many other illnesses, there is no cure, and the medications given to patients are only to help slow progression and treat symptoms such as fatigue, vision issues, and pain. While there are often incredible benefits from medications, both DMD’s (Disease Modifying Drugs) and medications to treat symptoms, there can be some pretty nasty side effects as well. As a patient you have to always be your own advocate. It was something that took me a while to understand, that I was in charge of my own health and that no doctor could make me take something that I felt made things worse on a day-to-day basis. Ideally, you and your doctor (and anybody else involved in your treatment such as a significant other or caregiver – who are often one in the same) will work out a treatment plan together that can change based on your tolerance to each medication and treatment you choose for your MS.
Varying types of DMDs
There are varying types of DMD. There are injections, monthly infusions and pills. They are coming up with more all the time, and with the help of generous donations as well as ongoing fundraising efforts, groups like the National Multiple Sclerosis Society are bringing more funding in for these important discoveries as well as much-needed awareness. We all hope that someday there will be a medication that not only prevents progression, but that will help to cure this horrible disease we all live with.
I have been through the gamut on DMD’s. I first tried Copaxone, which is a once-daily injection. My almost immediate reaction to it was a welt at the injection site. After a few days of trying different sites, and getting the same welts, as well as big red hot spots, I talked to my MS nurse about it and we decided together that it was not the right course of action for me.
Next I tried Avonex, another injection. Similar results. I apparently wasn’t handling these injections well. Which, by the way, was fine by me, as I hated giving myself a shot. I had to talk myself into it every time.
Next my neurologist and I discussed my options and he suggested that I should try a once-monthly infusion, Tysabri. First, however you have to get tested for PML (Progressive multifocal leukoencephalopathy), a rare disease that is typically fatal, affecting the white matter of the brain. I tested positive, meaning I was more at risk to get PML if I took Tysabri, so I opted not to try it, as I didn’t feel the risk was worth the potential reward.
After that test I tried Gilenya, which was the latest and greatest of the DMD world, a pill at last! There were, of course, possible side effects that come along with this drug as well. Some were manageable, flu-like symptoms, headaches, the norm of medication side effects. Some however, such as swelling of the optic nerve, were not quite so livable. So I have been on DMD hiatus for a while at this point.
Just recently I had to switch to a new neurologist and he has put me on Tecfidera, or as I had known it up until recently, BG-12. It is a twice-daily pill, and the most recent on the market. I can’t speak to its effectiveness on a personal level as it is only my second week, but so far I’ll take these side effects over any others I’ve had with any of the other medications I have tried in the past.
Medication is a personal choice
It’ll take some more time to decide if I will stick with Tecfidera or not, but either way, I will keep working with my MS Specialist to treat both the progression of my disease and the symptoms that come along with it. And I will continue to hope that there is someday a cure, or even a medication to stop progression. How many of you are on a DMD? If not, is it a personal choice or is it due to medical reasoning? What do you think of the current treatments out for handling your MS?
How many specialists did you see before finding "The One"?