Last reply 3 months ago
Medication advice

Hi all <3 So I was diagnosed in December. I chose Tecfidera to take. I have been on it for 5 weeks now. Some of the symptoms have subsided, but the weakness in the legs, the numbness in parts of my body, and the constant stumbling over myself has not gotten any better. Anyone else take Tecfidera and when did you start to see a difference? My goal is to walk without the walker, and I hope I get to that point. Has anyone tried Oceverus?

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mlgilber1
3 months ago

DMTs are only meant to slow progression, any symptom relief is just a bonus. I’m on ocrevus and doing really well so far. I was using a walker at all times and now I don’t need it at all and a lot of my symptoms have disappeared or lessened. I’m grateful it’s helped with my symptoms. I’d definitely give the Tec some more time because it takes awhile I believe. Also, have you tried physical therapy?


celena_foster
3 months ago

Hi mlgilber1. Thank you for the input. Yes, I do PT 2X a week there, and I do it at home the other days. So glad to hear the Ocrevus is working for you. I am really considering that one. I am going to give Tec a couple more months, which is when I see my DR again. We shall see!


mlgilber1
3 months ago

@celena_foster I hope it works for you! I was on Tec, but only for a little over 2 weeks. Then, I had a bad relapse and couldn’t feel or move my left leg and they told me I needed a more aggressive treatment because my MS was aggressive. The only sucky thing is that some people don’t feel well about a month before their next infusion because it’s wearing off and I’m starting to feel it. I’m still doing better than before treatment, but some symptoms are returning and last week I felt awful, but my symptoms are starting to calm back down. Only 3 more weeks till my infusion. Keep us updated on if the Tec helps!


smack
3 months ago

Go back to Nuevo. Ask for a three day course of steroids. Nip this beast while you can. Go with drug course after.


vivien
3 months ago

Hi @celena_foster and welcome to the tecfidera club!

I’ve been on it for 1 year and 1 week now.

You’ll notice more of a difference by week 8 – suddenly you’ll realise how bad the MS fatigue was when it goes Away and you have more energy!

You need to learn how to pace yourself to eke your energy ⛮ out for the day. Don’t get yourself in a rush to do anything, take an extra 30 minutes to get ready in the morning and have more frequent breaks throughout the day and you’ll find you get more done!

I’m sure the other Tecfidera club members will be along later with sage words of wisdom, @grandma, @highlander and @vixen to name a few!

Chin up, it does get better when we put the work in!

Vivien xxxx 🤗


kel62
3 months ago

Hi @celena_foster, I’m Kel, I’ve been on TECFIDERA for about 5 years now, it really made a big difference in my life. I was having the a lot of falls, numbness & tingling, there would be some days that I couldn’t walk because of it. I was also tired all the time & was having some cognitive issues too. Now a little background on me might help; I was diagnosed in 1991, and there were no meds at all for MS, the Doctors were still trying to figure out what the hell MS was, Lol. By the time they did start hitting the market, I had been in a wheelchair for 10years & was now out of one. My doctor put me Avonex, which almost destroyed my liver, then I was on Copaxone for about 2 1/2 to years. I was very excited when Tecfidera came out, no more shots! It has been working great for me. It got me back to steady ground, but it took about 6 months for me to really feel the difference. I would have friends or family members that I hadn’t seen in in a a couple of months tell me how great I looked, that I hadn’t looked that good since the MS diagnosis. But, as you may know, every single person with MS is different, in their MS & in their treatment, You still might want to give it some time to see if it’s going to be the best treatment for you, right now at this stage in your MS. Good luck, God Bless 😊🤗💜


grandma
3 months ago

Welcome to the Teccy club, I’ve even on it for nearly 14mths now, no relapses in that time so it must be doing something! Have had the beast for 26 years, was on Beta-Inferon for 23, one of the very first, in fact was on the trial for 3 years before NICE said yes, but it stopped being effective 18 mths ago hence the change. I chose Tecfidera cos I’d had 23 years of sticking a big needle in myself once a week for yrs and taking 2 tablets a day seemed like a pretty good deal. All the side effects were as listed, so we knew what might be coming, but as a rule it is only your body getting accustomed to the drug, and by wk 8 all was ok and has been since apart from the odd flushing which only lasts 15 mins and is easily dealt with. Good luck😜🥊


dominics
3 months ago

@celena_foster I was on Tec for 9 years (in the CONFIRM trial since the start). Have switched to Ocrelizumab in Jan.

I think others have mentioned, so I’ll just reiterate. The DMT’s do not and cannot treat symptoms. Steroids, perhaps painkillers, anti-depressants, anti-emetics etc etc are all for symptom management.

Put simply: DMTs increase the time between relapses and decrease the severity of future relapses. You have to have faith in the large scale data that proves this. Unlike the immediate correlation between a headache and paracetamol/ibuprofen on whatever your poison is, there is no discernible and immediate link. Some may claim this, I am happy their symptoms are alleviated, it is extremely unlikely that this was because of the DMT intervention though.

Many may claim this and certainly, the drug manufacturers allude to halting progression. They only have anecdotal and speculative data for this, nothing concrete.


highlander
3 months ago

Hi @celena_foster
I was in the process of replying to your question when @dominics beat me to it and worded it way better than I ever could.
I’ve been on TEC for a little under a year now, I have no way of knowing how well it’s working if at all until I have an MRI in a couple of months.
I still struggle to walk, talk and think to name but a few problems.
Every one is different as we all say, so what works for some may not work for others.
As for the side effects of TEC they do eventually calm down but they have a habit of popping back up again…at least you know its doing something I suppose.
Happy trails.

My doctor asked me to switch over Tec several years ago. I am so happy now! It has been years since I fell or lost use of my legs.


celena_foster
3 months ago

Oh wow thank you ALL for your input! I greatly appreciate all of your responses and words. It helps to know I am not alone 🙂 I am keeping as positive as I can to hope my symptoms will improve. I know it will never go away, but my goal is not to use a walker anymore. I understand I will have relapses, and I am coming to grips with that. I try to remember – I have MS. MS don’t have me! I thank you all so much and will be speaking to my DR when I go back, which is in a couple months. I am giving the Tec time to do its thing. I was told by the Biogen nurse it could take 2-3 months, and with the few symptoms subsiding I remain hopeful. God Bless you all <3


vixen
3 months ago

Hi @celena_foster. It’s almost 2 years for me now. My MS is still chugging along – boo! – but MRIs show no new lesions. Also, I think if you can get past the initial potential tummy troubles, I see it as one of the least invasive of the DMDs. I feel I’ve done the right thing by taking it. I always keep me eye on other developments, so who knows what other things might come along in the next 5 or 10 years to enhance our lives? All the best 🙂

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