I've been on Copaxone, Avonex, and then we put a port in my chest and did monthly infusions of solumedrol 3 days first month, then 1 day next then 1 day then back to 3 days. I have been on nothing for the past year until I started the Tecfidera. I've been around the block for awhile and have learned from some great doctors and mentors about MS as well as the side effects of different drugs.
The things I have learned and passed on I will offer here. It is up to you what you like or not like what I say, but here goes:
1. While taking any MS drug(s) or treatments, my doctors have told me to not partake in any herbs, vitamin regimens, bizarre diets, without talking to them. Since we don't know what causes MS and we don't have a cure yet, we also don't know how things we eat or take will react with the medication regimens we are put on by our MS doctors. When it comes to our brain, we need to know this is relevant and important advice. Many well-meaning friends, relatives and collegues have heard of and suggest this that and the other thing to take, or some Kabuki juice and we have to politely decline!
2. If you do not have a Board Certified Neurologist whose specialty is MS connected with an MS center, get one! You can guarantee that you will get the latest and greatest information and advice and connections. My Center is about 1 hour drive away (without traffic
) But you can work with your PCP to work with your specialist for things locally, but the Driver of your Bus needs to be their specialty!
3. Not everything, every symptom, reaction, etc., is MS. With that said, some things that are not MS (like a urinary tract infection) can affect your MS if not diagnosed quickly and treated aggressively. Back to #2 above, a partnership with an MS specialist and a Primary Care Physician who is willing to work with you and your specialist is very key to having great care.
4. When we go on new medication of any kind, it is hard with having MS and any of the complications from MS to not be looking under every rock to find something wrong or to blame it on MS or the drug. Researching your medication, like Tecfidera is easy with the Internet. You can read the papers from the drug trials as well as the information that is available from the drug company and the FDA and talk to your MS specialist. My docs told me right from the beginning to stay away from unsubstantiated claims that are put out there on the internet that causes needless stress. For those that didn't know, one of the other drug companies tried to stop Tecfidera from passing the FDA! A competitor....As patients, we want to be informed, but we can also be our worst enemy by believing things that are not officially substantiated. All adverse reactions have to be reported to the FDA, and they have in the past taken meds off the market and then put them back on with warnings. Tecfidera did not come out with a "black box" warning. The side effects are mild and go away in time and I am dealing with them like many others by making sure that I am not messing up my program by not following the advice and tips from my doctors by taking other things he doesn't know about or going on some crazy diet or something.
5. Tecfidera has a website where you can sign up and get a login for the latest information and can also call a number to talk to a special advice nurse if you have any questions. http://www.tecfidera.com
6. Five years ago while on the other ABC meds for MS, I was also suffering with depression and trying to figure out what this meant for me and my life. The best suggestion I got, and I did, was, I found a Psychologist who worked with me as a "life coach" to not make my life as MS. Every 6 months or so we get together for a catch-up, but I have used this as an opportunity to learn how to say "no" to doing things I think will wear me out, and to say "yes" to planning new activities and interests that I have never done before and to reach out to others to look at this new Medication as a golden opportunity to move ahead and to have HOPE!
Finally, I am very grateful that in my lifetime we can take a pill and the studies are amazing compared to anything before this med. I dreaded every shot, infusion, etc. every day, week and month and am going to suck it up and deal with the side-effects as long as I don't have some allergic reaction like any med. I am waking up every day with the same routine (earlier message from me gives my routine as recommended by my MS Neurologist at the MS Center of Atlanta) and then I am living my life the best I can and giving myself the rest when I need it and enjoying life instead of consuming it with this crappy disease.
Blessings to everyone,