A New Chapter Begins
After writing my first blog about multiple sclerosis I had intended on writing my experiences with this disease in a chronological order. And just as I was about to sit down and write the next edition I got a phone call informing me that I had been approved for funding for Copaxone therapy. And though the idea of taking daily injections does not appeal to me I guess you do what you have to do. Copaxone was the first FDA approved treatment for (RRMS) Relapsing/Remitting Multiple Sclerosis. It is considered to be the safest of all the MS drugs on the market at this time, as it has been studied for nearly twenty years, with very few serious side effects.
However Copaxone is not the first MS modifying treatment that I have used. Five years ago I was part of a clinical trial for Betaseron which is an approved drug as well but the clinical trial was trying to determine if a larger dose would be more effective then the already approved dosage. It was a double blind study where forty percent of the patients got the normal dose, forty percent got the higher dose, and the remaining twenty percent were put on Copaxone as the control group. I was assigned to a group and began my participation with high hopes. The study lasted for two years and then I continued using Betaseron for another year after that. At the conclusion of the study I was informed that I had been in the group using the smaller dose which in the end was fine by me because it was determined that the larger dose was no more effective then the smaller one in the treatment of MS.
After those three years I asked my Neurologist to remove me from Betaseron all together as I was very unhappy with the overall benefit that I felt that I was getting. I had been told that I might not see any improvement in my general and overall symptoms but that I should expect a reduction in exacerbations/attacks and their severity. As far as I was concerned neither of those outcomes happened though I was promised a copy of my personal study results which now two years later I still have not received though I admit to only half heartedly trying to obtain them, perhaps now I will so I can write about those results here.
I also should mention that I do a number of other things that are thought to perhaps slow this diseases progression. I take between five and ten thousand units of vitamin D3 daily along with a fish oil tablet day and night. When taking large doses of vitamin D always ask your doctor to add a vitamin D blood level whenever you’re getting other blood work. It’s not a good idea to have a super high amount of vitamin D cruising around your blood stream however most people with MS have very low levels to start with. Even at the higher dose that I take my blood levels have remained right at normal. And I take the statin drug Lovastatin which some studies suggest might have a positive effect on MS though I also have a borderline high cholesterol level which is what it’s prescribed to treat in my case.
And then finally, I also was put on Lisinopril by my doctor about a year and a half ago for the treatment of borderline high blood pressure. Lisinopril has also been mentioned in a small study as possibly having a disease modifying effect on multiple sclerosis. And what I will say here is since being on the Lisinopril my flare ups have been much less severe then they were at any time in the past eleven years since I was diagnosed. I won’t swear it’s the Lisinopril, it could be that my disease might just be transitioning into a secondary progressive stage which is the next, albeit slower, level of nerve degeneration after RRMS.
In the weeks and months ahead I’ll see if I can catch you up to speed on how I got here over the past eleven years as well as keep you informed about my progress after I start on the Copaxone therapy.
Please remember, if you have multiple sclerosis, never give up or give in to this disease. We will beat it, have faith!