My first day has given me some not so nice side effects, I thought I was going to be sick as I was feeling so dizzy but I wasnt thankfully and the flushing is quite bad and I feel like somebody is jabbing pins into me in my back, arms and the top of my legs. Not been a very good day but I will just see what happens for the next six days then it will be the full dose. Dont think I will be driving for a few days unless the symptoms calm down a lot billy
Billy & may. You both have similar symptoms to what I’ve had. My legs don’t feel normal, a bit weak but they aren’t really bothering me in comparison. A part of me is convinced it’s a relapse, but it’s too much of a coincidence as this all started the same day I started on Tecfidera. The only pains in my back were at the bottom of my back but that hasn’t happened to often. I was never on the injections, thus is my 1st medication for ms. I have felt sick a couple of times but haven’t been sick. It’s feeling light headed is what is really bothering me.
Thankfully the tablet I took at 8pm has been a bit better same symptoms but never lasted so long maybe just over 2 hours compared to a good 6 hours from my first tablet. Hopefully it does get a lot better, I was on Extavia injections but I came off them just over a week ago and I felt a lot better just like cookiemonster stated aswell. I have a friend with MS and they have been on it for about a month and they have said they do feel a benefit with tecfidera so I guess I will just have to keep going because it will get better and its worth it if it means less relapses
I find sucking a mint helps me when i get the sickly feeling.
2nd day has been a lot better as the side effects have been much milder I just had 4 slices of wholemeal toast and a yoghurt drink before I had my tablet. Hopefully I have had the worst of my side effects but I will just have to wait and see, hope everything turns out ok Minnie_mouse and hopefully it’s not a relapse but I can see how you think it might be one and hope you start feeling better soon, I know the side effects aren’t the same for everyone. Thanks Irons I will ask my wife to gete some mints today in case the sicky feeling happens again. Thanls everyone it makes you feel better when you know you are not alone and the side effects are quite normal…Billy
Dear Minnie,
if you suspect that tecfidera is giving you some side issues, why have you gone to the full dose already? if you have some sensitivity to the drug, ease yourself into it more gradually.
I see from other threads, that you do a great deal of research into tecfidera and related topics; good for you! But if find that few others suffer the head and bladder issues you are reporting, you should perhaps consider the likelihood that what you suffer, is not actually caused by the tecfidera?
stick with it and good luck.
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if you are open to advice, i have three suggestions for you to consider:
- take aspirin and anti-histamine / allergy drugs to combat the prickles and flushing.
- ensure a mostly full stomach to avoid nausea
- don’t rush into taking the full dose
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I’m trying to eat a reasonable amount for tea before I take my tablet. That thought did cross my mind about the full dose but I only had enough of the half dose to last me for one week. But to be honest I don’t feel any worse today than I did a week ago, that’s one thing. I just hate the way my head is feeling. My nurse thinks it’s 2 much of a coincidence for it not to be my tablets, but I’m not convinced. I know I’m definitely having some side effects from the tablets ie the sun burn flush but knowing my luck sods law springs to mind! !!! GP has given me a sick note, hopefully this time will give my body time to settle down. I hope
My neurologist started me on Tecfidera, I had my first tablet at 9am on Monday by 10.45 I was having a major allergic reaction, all over body rash, I knew I would get a bit of facial flushing and would probably feel hot. I upper arms started to swell and my mouth did as well. I ended up having a panic attack as I felt like I was being slapped 1000 times and could not control it. My doctors gave me medication to stop it and after 2 hours I felt better but extremely shattered. I spoke with my MS nurse and she told me she had not heard of such a major reaction, she is speaking with my neurologist to find out what I should try next. I have since been left with right ear tinnitus! My body obviously does not like something in this tablet!
Hey Minnie_mouse,
You are not alone. I felt absolutely awful on it. I had all the physical symptoms; distended stomach, absolutely pregnant with wind, flushing and nausea. I could deal with the physical symptoms but the feeling of being completely not with it was horrible. On top of that I couldn’t type, I kept on hitting the wrong key and my balance was severely effected. I had to give up within the first week, I just couldn’t function. I feel a lot better now. I have told the neurologist that I will only take it on the lowest dose until my body gets used to it. So, yes, there are other people, like you who are hyper sensitive to some of these medications.
It is a pretty tough, as I just want to pop the pill, take the precautions i.e. eat, take aspirin, antihistamines and everything is relatively fine. Unfortunately, this wasn’t the case. I was pretty disgruntled as I came on here to get some advice and support and I felt that some people were very unsupportive, patronising and even condescending as to how I was feeling. I was extremely annoyed and upset. I have to admit, that most people, like Paola were fantastic and very supportive.
For me, It’s like having a severe relapse, saying that you have this rare but debilitating symptom and people suggesting that this isn’t the case. I suggest that this wouldn’t happen.
Anyway, Minnie, I hope that things get better for you. I don’t really know what to suggest. I have had this problem with both Rebif and Copaxone. I persevered with those fro to months but things did not improve. So, it would seem that I am very sensitive to medication in general. As I said, if I go back on it again, I have suggested that I go on the lower dose until my body becomes used to it or not, as the case may be.
Good luck with it, whatever you decide. 
I don’t have reactions that often but yesterday evening I turned purple(really hot head) and my whole skin was “prickly” and i popped a couple of paracetmol and it eased…
Yup me too, walking round next looking like a bleedin beetroot. Still luckily that the only side effect I get with Tecfidera. You must take it with food thought, preferably during the meal. Worth noting.
Trev
Hi, I have been on Tecfidera now for 3 months and it does get better. started on half dose for 4 weeks before going on full dose which really helped. I agree about feeling drunk in the morning even though i dont drink after having breakfast then 1st tablet sometimes i fall back to sleep when watching tv. my hot flashes are less and less dont have them everyday now as long as i eat enough. sometimes i an have a hit flash around lunchtime even though i take my tablet at breakfast and teatime meal. sometimes i feel nauseous so lie down for a while. stick with it it really got easier for me after a couple of weeks.
I started taking tecfidera on Monday, half dose for the first 7 days but today (day 5) I’m struggling to walk normally. Well normal for me anyway!
Is anyone else taking this and noticed anything similar? 