Hello,
I was recently diagnosed with RRMS after 9 years of limbo. While the diagnosis was not too much of a surprise it was nevertheless upsetting. Over the last 9 years I have come on this forum to learn more and have felt reassured by the posts on here, so thank you for informative reading during very uncertain times and thank you for support from a far.
My neuro has recommended I start taking tecfidera. I am waiting for a referral to see the nurse (I saw Neuro privately) I have done a bit of research on tecfidera and just wondering how people manage the side effects. I have read good and bad stories. I was hoping to start the drugs without telling work of my diagnosis and see how I get on. I have minimal problems at the moment so nobody would realise anything is wrong. For me I would prefer to get my head around the reality of MS before everyone else learns of it.
Sorry if there is repetition here re tecfidera. I am really panicking today and so v grateful for any advice.
Thank you
If you have a look on the Everyday Living page there are often new posts about the possible side effects. Use the search tool to find post on Tecfidera as there are plenty to choose from. The other thing to remember is that lots of people take these meds and not everyone suffers from the side effects. I’m currently waiting to see my neurologist and I want to start DMDs - I was diagnosed 10 years ago so I’m lucky my progression is slow but I eagerly search looking at new post so when I do see him I will be armed with all the facts. Has your appointment come through yet?
Hi there. I was really apprehensive about starting tec after reading all the horror stories. I found a Facebook support group that really helpful and I was completely reassured. I’ve been on tecfidera 4 months and rarely have any side effects apart from the occasional flushing if I don’t take my tablet with a proper meal. The best piece of advice I was given was to take my tablet with a meal based around protein then to take my tablet with a spoon of peanut butter I swear this is what kept my symptoms away.
Best of luck
Thank you very much for your comments. Really reassuring and I appreciate your support. I have had a crazy week at work so I’m sorry for only just replying.
i am still waiting to see the nurse, ridiculous! At least I have had a bit of time to get my thoughts together and feel semi prepared!
thank you again and I wish you both well xx
Hi Smile81,
I was diagnosed in April came as a complete shock, had no major symptoms apart from slight numbness to my right torso. Neuro originally said he didnt think it was Ms so was a real shock when he said it was RRMS.
Since April i have been living a nightmare, feel poorly all the time with various things, tingly legs all the time, fatigue, depression, the works !!! I mention it to doctors/nurses who all say “its not the ms”. Well what the hell is it, no one is helping me. I am suffering chronic back pain and have had to seek help privately.
In June i was offered Tecfidera which i am still thinking about, scary isnt it ??!!
I finally decided to put aside the possibility of PML, side affects and feeling crap for 2 months and looked at it as help for the future. Phoned hospital to book the tablets last week and havent heard anything since.
If it helps i did speak to a lady who started it in Jan she had a rough 3 months but now feels great, the best she has ever felt and slimmer than ever !!
Good luck with your choices, just look at it that it could help you perhaps 10 or 20 years time from not being in a wheelchair or struggling walking.
Linda
Hello, thanks for your comment Linda. I hope you are having a better start to the week? I am sorry that you are struggling.
I have my appointment with the nurse next week, have a very long list of questions but am feeling much better about it all.
Trying to keep positive xx
Picked up tablets today , still very unsure.
back is killing me !!
linda
Hello, I tried Tecfidera for nearly 4 months this year. Unfortunately, they wasn’t for me but there are many people that have found them very successful. I did have side effects from them and only stopped taking them as my MS was still active so neuro decided Gilenya might be better for me which I’m waiting to start. I did have side effects from Tecfidera i.e stomach issues and flushing but they did lesson overtime. I was nervous to start with but after being on copaxone I was just glad to not be injecting everyday! Good luck and I hope it’s the right med for you 
Hello everyone.
I am in my first week of starting Tecfidera and so far all is ok. Only minor flushing on day 3 and 5 but nobody noticed apart from me!
I am starting the higher dose on Saturday. I am anxious that my good run is about to stop.
can anyone share how they felt when moving to the higher dose?
thanks
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Hi Smiles, how’s it going? After commenting on your post in July, I started tec in December so probably a month before you. How are you getting on with it? I seem to be fine most days as longtosstocasionally as I take my 1st tablet with porridge or peanut butter on and only occasionally have the tingling & flush now. I had my 1 month check in Jan and my results werent too good showing low levels - but I hear many people have this problem & hoping for an increase on 28th of April when I have my next appointment with my ms nurse. Let me know how you’re getting on Sharon x