Hello you amazing MS warriors.I was just diagnosed with RRMS and the neurologist prescribed tecfidera. I haven't gotten it yet because of the whole specialty pharmacy situation, I also I'm changing to an MS and neuroinflammation center at a university hospital. I don't know how long it's going to take to get referred there. This was my first episode and I'm recovering well generally speaking. Numbness and tingling is almost gone. I definitely feel tired and away I've never felt tired before and super emotional. (2 things that were not the case before this happened). I think in the house game of things my episode was mild.
Is tecfidera the only thing they try first in the US? I have had a few folks tell me Ocrevus.... But I honestly have no idea whether that would even be an option.
Just curious what you all w
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Most of the medications can be for first time use. I have not taken that one, but many here have. Setting up medication delivery through a specialty pharmacy does take longer than a regular prescription, but refills are usually scheduled and timely.
MSAA has good info on all the MS DMT's, how they are taken, possible side effects, etc. Read and become familiar with them so you can decide which route will work best for you, oral, injection, infusion, with your health situation, medical history, etc.
There are many choices available as a first time med. I would suggest one of the newer DMTs with a higher efficacy. Check with your insurance to confirm which MS meds are covered as a first tier med.
Is the change to the MS center a 2nd opinion? If so you may want to wait until the appointment before making a decision.
I have been on Ocrevus since 2O18. I find an infusion every 6 months easier then remembering pills or injections.
There are many options out there as a first line DMT. Different doctors have different opinions, but ultimately it's really up to you (and of course, your insurance). I think starlight5's suggestion about looking at the MSAA site is a great idea. Each of the drugs is listed with lots of detail. I will add one thing. Please keep in mind that the DMT's are not one size fits all. You may get lucky and find that the first drug therapy you pick works great for you, but sometimes it does take a bit of trial and error to find the right therapy. If you read enough posts on here, you'll see that many of us have been on a number of therapies. Wishing you all the best on your journey.
Well, heck. I am sorry about your diagnosis. But you already knew, right? Here's a link from YouTube for the newly diagnosed. I love this guy. Wish I lived closer to his clinic. youtu.be/CNeSLhjhlxc?si=fge...
Tecfidera is a good med, just the side effects can be annoying... hot flashes, even for a guy. Tecfidera is one of the first ones they will try before Ocrevus or any other. I have been on Tecfidera for a few years, then they switched me to Ocrevus which has much higher infection risks. Both worked for me, but it is different for different people. ps. Going for my Ocrevus infusion this morning.
My neurologist put me on Tecfidera when I was first diagnosed 9 years ago and I’m still on it. The only real side effect I’ve had was the hot flashes, but I find that it only occurs if I take my tablet without eating first. It seems to be keeping the demons at bay though, for me at least. Good luck!
Tecfidera was my first med about 10 years ago. Unfortunately it tanked my WBC count and I couldn’t continue with it. It is a pretty strong choice to start with - I would definitely get that second opinion before starting anything. There might be a more “mellow” choice for you at the start.
I was recently diagnosed and my MS specialist put me on Vumerity which is taken orally twice a day. I’ve been on it 6 weeks without any significant side effects. Time will tell if it helps me.
If you trust your MS neurologist try what he recommends first you may have to try several DMT'S before you find one that works for you good luck and trust your doctor
The decision of 1st, 2nd, 3rd...meds can be anything. Tecfidera was my first medicine, then Copaxone, the Aubagio. The first two caused bad reactions so I had to change. All the meds have good and bad sides, depending on the person taking them. Keep trying until you land on one that works for you.
I have been on 3 DMTs, none of which was Tecfidera. That doesn't mean there is anything wrong with it being someone's first DMT. It just means it isn't always the first (or second or third) that is prescribed.
There are now many choices for ms and it can be overwhelming. I like how my neuro put it:
1. First he said that the choice of treatment is mine, not his;
2. He suggested 3 different drugs to choose from and gave me lots to read about each;
3. He asked me to evaluate which one would fit better with my lifestyle (daily pill, weekly injection, infusion every 6 months);
4. He recommended to go with the most aggressive treatment available. (I love this one, because it's our brain under attack; you don't want to waste time on drugs that are not "efficient" enough).
Ocrevus it was and 5 years later, I am stable with no progression, no relapse, no active lesion and no new lesion.
My first medication was Tecfidera. I was on it for five years with no side effects or relapses. But my neurologist checked my blood work regularly and decided I need to change because of my wbc counts. I tried Copaxone, Aubagio, and Avonex but either had side effects or relapses that required a change. I’m back on Tecfidera (now the generic of it due to insurance) and have not had any issues. I love it, but it’s not for everyone. You may have to make several attempts at trying different medications before you find what works for you. Hope it works for you so that your MS journey is a little easier.
I had bad reaction to Tecfidera but it works for some. I've done Aubagio, Tysabri infusions, & now Mavenclad. I take prescriptions for walking, fatigue, numbness, & now anxiety. Good luck to you.
I was started on Tecfidera, then had problems with it, than Aubagio, had problems with it, then Copaxone, lasted longer but went in the hospital for 6 days, then the last one was Mayzent, 3 days in a coma and 10 days with doctors (cardiac doctors ) not having a clue, my wife a CNA said I was going home because she and I were tired of the Stupid doctors playing the doctor game. So I am done with the meds, the cardiac doctors put me on meds that damaged my ability to walk well or far. So when getting an MS doctor get a true MS doctor. For me my MS doctor was mad. I am partially crippled now and it was the MS that did it. Meds and Stupid doctors.
I would go to the Dr/clinic you want to see, and get their opinion. You never know there could be some great clinical trial you can be a part of.
Do research, I remember my Dr in Tx tell me, that some of these meds have had really bad side effects like cancer or brain infections. University Hospital clinics are the best.
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