lw2208 20/11/17
Last reply 7 months ago
Want to hear reviews of tecfidera!

Please help. Im due to see neurologist on 19th dec to let him know what DMT i am wanting to take. It has been suggested i start Tec and the not relapsing rate is 50% compared to others around 30%. This at time sounded great but having been doing my own research its seems that it maybe isnt the best due to awful side effects and i have read lots of people having to stop iy due to relapses and generally their MS taking a dip. Has anyone actually taken this and been relapse free? Im quite scared to take it now for fear it makes my MS worse. Thank you 😚

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


wjgregg
7 months ago

I have recently started on Tysabri, on the recommendation of my consultant. Two infusions in, I am glad to say that I have suffered neither side-effects (save for tiredness and joint pain, which I can live with) nor a relapse. I see that you are from Stirling, Scotland I presume. Again, I’m presuming N.H.S.? Doesn’t your consultant have their own recommendation for you? Surely it is their job to let you know what is best for you?


lw2208
7 months ago

Thanks for reply. That was their recommendation for me. They won’t do infusions as they arent first line treatment. I know tec can be goof but just wanted to see of anyone had positives of it. I had totally made my mins up that tec was for me, maybe now im just having doubts.


wjgregg
7 months ago

I guess we have to trust our consultant. I am fortunate, in that I have a brilliant chap in Leeds. it was quite a struggle to get him though (I am very grateful to my wife for all the work she put in to make it happen). When I was in hospital following a major relapse, I was finally diagnosed. The neurologist didn’t specialise in multiple sclerosis, however, and was a little stumped by my case. Due to our location (which falls neatly between Yorkshire and Lancashire N.H.S. areas) I was almost sent to Preston. When we learned that there was a THIRTY week waiting list to even see a neurologist, and that they had no multiple sclerosis specialists, my wife swung into action. It pays to research the doctor. A general neurologist just won’t do in many cases. Good luck, and I hope you find a treatment that suits you. All the best. Jon


vixen
7 months ago

Hi there. I have been taking Tec for seven months with no side effects, so have been lucky. For me, the tablets fitted in nicely with lifestyle. I have had no relapses so far. But the thing to remember with DMTs is that there is no way of knowing whether or not I would have had a relapse had I not taken Tec. It’s impossible to assess individual efficacy, only when control groups are done on a large scale can we see general patterns.

The good news is twofold; first, we have access to range of options that simply weren’t there twenty years ago, and second, you can change if Tec doesn’t suit you. There are many more, plus lots bubbling in the pipeline too. We’re all in this together and can support one another 🙂


lw2208
7 months ago

Thanks for replying. Its true i can change it if it doesnt agree with me. Suppose its just nerves before starting. Im willing to take the side effects whatever they throw at me as long as i remain relapse free 😊 its all quite new to me and im finding a lot of negative stuff regarding tec online. Maybe i should stay off the sites! My Neuro is good and sure this is best plan for me.


potter
7 months ago

I have been on Tecfidera now for 4 years and haven’t had any relapses. I had some trouble with upset stomach when I first started but my body got use to it and haven’t had any problems since. It is unrealistic to not expect a few problems when you start any DMT. Your body has to adapt to them, I took Rebif shots for 5 years and always felt like I was just getting over the flu. I had to quit because of skin rejection, my insurance had just started paying for Tecfidera. There is lots of help on the forum to help minimize the side effects. There is a new drug coming on the market that is like Tecfidera but without the side effects, you might want to do some research on it. Potter


heatheranddizzy
7 months ago

I have just started on tecfidera and so far hardly no side effects. 🙂 I followed peoples advice about starting on just one tablet and then making sure to eat a good sized meal with protein before taking the tablet.
I had put of taking any DMD’s for nearly 3 years but it’s important to remember that you can come off it at any time. Also the internet is not good for these things at all! I did a lot of research into nearly all of them when I was first diagnosed and people had awful stories for all of them. But it’s important to remember that’s not the norm, and until we try them ourselves there’s just no way of knowing. Any concerns though I would ask about at your next appointment. They’ll be able to give you a proper idea of the proportion of people that do badly on tecfidera and other drugs you may be considering.
Good luck with deciding. 🙂 xxx


californiadreamin
7 months ago

@lw2208

My wife started it a year ago. The first week was great. The second week became really really bad. We pushed through for a few more weeks and then gave up. We stopped and started again and had much more success. Even though she did all the eating before she had serious pain. It turns out that a super common medication (given to kids as well) called montelukast solved it for her. It took 48 hours for it to start helping and she is fine when she takes it with the Tecfidera (she has mostly tappered off the montelukast but still takes like a quarter tablet).

The other thing that helped we believe when she started again, she started on 120’s once a day for a week. then 120’s twice. Then 120 in the morning and 240 at night for a week. It took 4 weeks to ramp up fully, but it helped her body adjust.

Here is the thing about tecfidera which we have gather from now a number of people and dr’s. Your first 8 weeks are mostly your body getting used to it and then it magically gets better for many many people that have problems. You might not have any issues, but even if you do, its 2 months and then it could be clear sailing.

I do not think i have seen any studies that show it making MS worse. I would use it with confidence that it is only going to make things better. It may not be good enough for everyone, but given the safety and flexibility to change its a pretty good start choice in my unprofessional but researched view.

Here is a detailed report/comparison of a lot of DMTS:
https://icer-review.org/wp-content/uploads/2016/08/CTAF_MS_Evidence_Report_012617.pdf


lw2208
7 months ago

Thanks guys for all replies. Your all right and suppose yest i was just having a wobble. I know taking the DMT is the best solution and the side effects arent really concerning me at all if it means that i hopefully have fewer relapses. I think its time to stop reading all the negative reviews of it online! They clearly arent helping me. My nurse says Tec is the best fitting for me and i agree. Ive read lots of tips to help make the side effects work and will work it around my job. I am always keen to learn about new medication coming out and willing to try anything. MS wont beat me 🤞. Thank you for taking the time out to reply, its good knowing you can always ask questions here!


mermaidia11
7 months ago

Don’t mean to confuse you Chick – but On the flipside, I was diagnosed, had a bad relapse 2 years later and then went 15 years without any symptoms, but tiredness – but who doesn’t get tired? . I have never taken any DMDs
I’m glad I didn’t mar the beat years of my life with medication, which could have happened if I’d have had an adverse reaction, seems like a sledgehammer to crack a nut?
Why don’t u wait a little before you decide?


Anonymous
7 months ago

So far, for myself, Tecfidera has been great for me. When I took the lower/smaller dose, I initially had some flushing in the beginning. After that, I went up to the 240mg. and took a little food with it 30 mins. prior to taking it and was fine. I’m about 3 months in and now I take it with/without food-no issues. I am just so glad I don’t have to inject Copaxone 3x’s/wk! Seriously, I have no complaints thus far. I know there are potential side-effects, but I think it comes with the territory.


freya
7 months ago

I’ve been on Tec for almost a year now and seem not to have had any relapses – at least nothing major! 1 year MRI showed no new lesions at all and the old ones shrunk. Have some issues with side effects – flushing – but no gastro issues at all and it’s relatively well controlled. The side effects with Tec are very temporary and will stop if you stop taking it. And on’t forget that you’re likely to see a lot more negative reviews online as those who struggle with it are more likely to post something than people with no problems — just like bad reviews of hotels & products!


shep
7 months ago

I’ve been on Tecfidera since April 17 and I’ve not had any relapses. I only had a wee bit of flushing at the start and no other side effects at all. I make sure I have my food with the pill in two stages i.e eat half of my breakfast, take the pill with a large glass of water and then finish off breakfast. Same with dinner. Breakfast I usually have porridge with berries and to finish off I have some toast. I can usually tell if I haven’t had enough to eat as I might get a small flush a few hours later but nothing to worry about and not often. I would rather pop a couple of pills a day than have to do injections etc.

I also follow the OMS recovery program as well and would recommend checking it out. Get the free book and read it and then make up your mind. I have always been very active so the exercise part of it was a breeze and after being on the diet since January 17 I have never felt better.
Good luck

Post Comment

You must be logged in to reply to this topic.