Last reply 3 years ago
Tecfidera reviews wanted! Anyone else on this?

Just wondering if anyone else out there has made the switch to Tecfidera? I used to be on Copaxone but hated the needles so have switched to the pills! They’re not going so well at the moment! I’m on week 3 and have terrible cramping in my stomach, nausea, headaches, bloating, indigestion and reflux! Going to my GP today to get something for all of that! Hope it settles down soon or it will be back to Copaxone for me! I’m feeling awful all day and night!

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stumbler
4 years ago

This website details the side effects of Tecfidera and seems to suggest they should go away fairly quickly:- http://www.webmd.com/drugs/drug-163868-Tecfidera+Oral.aspx?drugid=163868&drugname=Tecfidera+Oral


aoife-2-2
4 years ago

I have not started Tecfidera yet as it is not available yet in Ireland but I intend to switch to it as soon as it is released here. From what my Neuro has told me, and as stumbler has said above, apparently it settles down after a short time. Your system just needs some time to adjust to the new medicine and once it does your side-effects should go away 🙂 I would love to hear about your experience with the drug as I am due to have the switch over mid-late 2014. I am planning on doing a masters in Septmeber but am not sure whether to hold off a year or not incase it is bad timing with starting a new drug. I would really appreciate if you could keep me posted! It all sounds good in theory, but I would like to have an opinion that is based on first hand knowledge and not just a bunch of statistics. Happy Christmas!! 🙂


muststopms
4 years ago

I am on the oral med Gilenya, but know many that have taken Tecfidera. The stomach issues usually go away after a month or so for most people. Hope you get relief!


miskovic75
4 years ago

I started DiMethylFumarate in January 2013 (while still on Copaxone until June 2013). Already several years ago, my digestion trouble started to intensify, so I was actually not looking forward to pills which can cause more belly-trouble… But as Copax was not helping me much and the studies on DMF (BG12/Tecfidera) were so good – I gave it a shot. I did not notice any further increase in stomach trouble, not once since I started DMF. After a few months on DMF, my digestion started to get better, as well as other MS-symptoms began to fade. I am very happy about this “old” pill (originally used/still in use for psoriasis), it is bringing my life back in small bits, but steadily.


mrshawk
4 years ago

I am on week 3 and other than some flushing here and there so far so good! fingers crossed the GI symptoms stay away from me!!


kylie1982
4 years ago

Update on my Tecfidera experience…

I lasted 3 weeks on it. I couldn’t keep going with it any longer. Each day that went by i was getting more and more nauseous and grumpy and irritable because of the nausea. I was also getting the flushing all the time, and feeling quite dizzy. I couldn’t eat properly and i couldn’t sleep either. All i wanted to do was sleep off the sick feeling but it was so hard to get to sleep. I did choose a terrible time to change over. It was Christmas / New Year and i was heading off on holiday overseas.

I went to the Dr to get some pills for the nausea which didn’t really help. I also got a proton pump inhibitor pill to take to ease the GI symptoms, but by that time i was already seriously over it and they weren’t working fast enough. I had been speaking daily with a Tecfidera support person who gave me such wonderful advice and let me contact her 24/7. She was amazing. But i just couldn’t stick it out.

I decided to stop taking Tecfidera on Christmas Eve. I still felt like crap on Christmas Day, but it wasn’t escalating anymore. It took about a week for me to get back to feeling ok again. I went straight back on Copaxone. I flew out to Singapore on the 28th December, so didn’t want to push through the nausea while i was on holiday. I may try it again some other time when i don’t have plans to travel etc.

I was really hoping it would work for me as i hate having the needles. I have been manually injecting since being back on Copaxone and it hurts A LOT less than when i use the autoject. I absolutely hate needles but have overcome a massive fear by having to give myself injections. I have been manually injecting for nearly a month now and it’s still not any easier for me. I still freak out every time i have to inject, but knowing that it’s a lot less painful gets me through it. It takes me about 5 minutes to mentally prepare myself to jab myself. Makes me shiver just thinking about it.

So unfortunately, that’s the end of Tecfidera for me at the moment. I hope no one else has the same issues i had. I was really hoping that it would work for me but unfortunately it hasn’t.


giabean123
4 years ago

Been on since late November..first two weeks was like crap almost stopped but reading from a Tec group on FB everyone said push through it, symptoms do not last. Glad I stayed on it. Feel very well now..and alot easier than shots…


miskovic75
4 years ago

My tricks for Copaxone (was on it for 3years, before happily switching to DMF 13 months ago):
– the trick to less pain with autoject is finding the propper depth for You (takes more then 1 shot to confirm, that it is a good or bad setting)
– manually remove the cap from the needle and press out ALL the air, clean the needle with an alc-stripe, let it dry a minute before shooting (in my case this prevented skin-reactions, which were horrible with the extra air)
– rotate 8 injection areas (belly left and belly right as 2 areas, unlike just one), first take 4 areas on the left side, then 4 on the right side of Your body
– make sure never the hit exactly the same spot as before

BUT, I have to confirm one thing – while as was on Avonex for 5 years, it was crucial to have the injection pressed out as SLOWLY as possible – whole boring 60 seconds proved to be the right time. So maybe that the difference for You when injecting manually?

AND, I should also admit, that out ouf my 260 Avonex shots, I shot myself just about 30. Sharing Your hate for needles 🙂 I liked Copaxone-autoject, because I could do the shots myself.


miskovic75
4 years ago

Sorry, I forgot: cooling down the area after injection was a must for my Copaxone shots.
And, to be honest – during 3 years on Copaxone the pain was sometimes more intense, other times less, but the average pain level remained constant for me.
But, my pain lasted 10 minutes, that is 70 minutes a week in total. With Axonex I had flu-likes for 30 hours each week, so I called that a ‘good business’.


caterpillar
4 years ago

I wonder how you are doing and if you tried Tecfidera again. I have been struggling with it in the past few weeks ( the symptoms as described in your post). Stopped medication, got better. Started again, got a lot worse. Now I am starting again on a lower dose, but I got cramping pain after the first capsule already. Is there any hope?


wilf
4 years ago

I’m thinking of moving on to DMF soon. The Avonex is making me sad. Really hope my tummy likes it


graham100
4 years ago

Just started copaxone. 4 times so far, stings a bit for couple mins, think I will get bored soon. Would rather take a tablet I think?? Though when I let the wife stick a needle in me it will make her day. Lol


vmonger
3 years ago

I have been on Tecfidera for 3 yrs. I have a lot of cramping , Diarrhea , felt like flu for 7 months. Now I have tested positive for JC Virus. I had tried copaxon , beta Serbian , I see. Dr in Phoenix on March 24th. Not sure what they do. I keep thinking would it be better to get off this pill you need to talk please send me message.

PS e-mail address removed to protect your privacy. Personal Messaging should be used. 😉 Stumbler (Admin)


uka17
3 years ago

We don’t have any alternate solution for MS treatment except injections in Russia =(. But honestly speaking, I don’t know what is better – to suffer from side effects you’ve described or to injure yourself with needle everyday – quite hard to decide. Anyway, I think your Dr should advice how to deal with it.


adbhoy
3 years ago

I have been on it for a few months now and the only symptom I get is flushing, which I can’t stand!!! Other than that I haven’t noticed anything else.


katflowers
3 years ago

I’ve been on it since Thursday. First 2 pills gave me a 5 minute flush – both a few hours after taking Tecfidera. Last night in bed I felt like I had stayed out far too long in the sun – sure enough this morning I am like a spotty tomato on my face, chest and arms – attractive!


rose99
3 years ago

Hi All,

I am just starting Tec today and from what I have read, anything could happen! Yikes! Let’s hope that I don’t get all the side effects in one go! Is anyone still on this and how long did it take after you took the first tablet for anything to happen?

Thanks
Rose


stumbler
3 years ago

@rose99 , make sure you follow the advice to always take your Tecfidera shortly after a meal. 😉


rose99
3 years ago

Will do thanks! Fingers crossed and I will let you know how I get on.


vmonger
3 years ago

I have been on Tecfidera for 3 years. First 6-7 months I was sick. Now I find out I tested positives for JC Virus so I’m thinking what next!


rose99
3 years ago

Sorry to hear that, I have heard that they do need to do bloods regularly to check your white blood cell levels etc as there is a risk of PML developing. I hope you find something new to take that suits you, be well xxxx


johnathanmac
3 years ago

Well I have been on it for 11 weeks. I obviously can’t say if it’s working or not as I haven’t had another MRI to see if my brain still looks like the Battle of the Somme. My personal views is that it is not for me. After 11 weeks I still flush, burn & itch twice daily regardless of how much I time after a meal, what the meal is, ect. I have tried almost all combinations of food from more fat, to more protein, heavier to lighter meals, ect. I just seem to be the unlucky prize winner. I have had two UTI’s since starting Tec and I have never had one prior to taking Tec. I’ve had numbness return but in places that I never had it before and with an intensity much higher then previous relapses I’ve had. I have found myself more fatigued and irritable than usual as well.

So my review is not going to be a greatly positive one but I will say that obviously everyone is different. Some will like it, some won’t and some will bare through the side effects while others will abandon it for a different option. As for the PML risk, my biggest worry, I have an appointment with my MS nurse coming up in April to take bloods and a urine sample to test them so it is well monitored and when a risk is high enough your nurse and neurologist will discuss at the time what to do.

I would say to anyone that has not got an elevated risk of PML to give it a go. The vast majority of people lose the major symptoms within a month of use. My body just hates me a little more than most. Give it a try and if it is not for you discuss an alternative treatment 🙂


rose99
3 years ago

Thanks JohnathanMac, that seems like a fair review to me! My bloods were good starting off and so I am going to give it a go and see what happens! Sounds like Tec has put you through the wars already. Are you going to stick with it or try and find an alternative? be well xx


Anonymous
3 years ago

I had very similar results. The difference was that I was in a clinical trial taking it 3 times per day! I could never adjust to it in 17 months and in fact my symptoms became intolerable and I had to quit. I am sensitive to most drugs and Tec is a billion $ drug for Biogen, so obviously most people can live with it and I would not discourage patients from trying it for those reasons. Just confirming your observations.


johnathanmac
3 years ago

@rose99 Well thats the Million Dollar Question now isn’t it! Do you stick with it, do you change or do you stop everything altogether. I’ve already had Avonex that did nothing so that has removed all Interferon based meds for me. That leaves me with Fingolimod, Tysabri or Lemtrada. Each have risks and Lemtrada I have already ruled out entirely. The annoying thing is that when I stopped taking Avonex and before starting Tecfidera I felt human again, I don’t know how else to describe it but you will hopefully understand what I mean, that medicated feeling that slows you down in mind, body & spirit. It was nice to feel like I did before I ever had MS. When I was on Avonex I would hesitate to inject, I knew it wouldn’t hurt much at all but every time I hesitated. The same happens with Tecfidera, I hold the pill and stare at it, if only for 30 seconds, but I do it every single time and just wonder what would happen it I didn’t take it, put it back and walk away. No doubt I will be allowed to have a minor nervous breakdown when I see my Nurse in April but till then I’ll just sit and stare at the pills :/

@mbrsinc It would sound awfully macabre if I said I was happy someone else experiences medications like I do, list the symptoms and check off 90% of them as being ‘full on’, but at least someone knows the drain it puts on you every day so I appreciate your understanding 🙂


Anonymous
3 years ago

John,
I know that I have a hard time with most new meds and tec caused an allergic reaction by the time I quit. I was red from head to toe at half dose and could hardly move when that would happen. I was desperate to have it work out and stuck with it much longer than I should have. The trial results were impressive which is why I would recommend new patients try it if they were afraid of Lemtrada. I think the PML risk is worse than anything Lem could give you. I am finishing up Gilenya now in favor of Lem, but fyi, it was the easiest drug to take and I think would get you out of that drugged effect you are experiencing. I think after the first dose, which even for me, was easy, it is a great advance and more effective and easier to take than anything else. (Just 1 tiny pill a day). I don’t think it would cause you a break down or leave you staring at it. 🙂 Best Wishes!


andyc67
3 years ago

Tec or Gilenya?

My nursey is going to give me the option , I have thrown lemtrada at her but that seemed to bounce of her tough exterior. I’m on Rebif atm but so fed up with being a pin cushion for er indoors.

Any sensible comments lol..

Andy C


Anonymous
3 years ago

One last thing John, I know what you mean by wondering about stopping the drugs altogether as the same feeling of being human again returned to me after quitting Tysabri. I learned the hard way and without warning that it sets you up for a relapse as a result of the DMD withdrawal. I felt great until I had maybe the worse relapse ever about 8 weeks after quitting Tysabri. It is a very strong drug and they now warn you against quitting it without having a strong DMD to replace it. They even named it Tysabri withdrawal syndrome. Cool to have been a pioneer in helping to uncover that info! 🙂


melimo
3 years ago

I am 45 and have been on Rebif( auto inject) for 2 years and I am so fed up with needles that I asked my Neuro to put me on pills to try. I started taking Tecfidera this morning. Holy crap Batman I did not expect that reaction! I went a surnburn color of red all over my body. I read the pamphlet on side effects and thought “Flushing” meant a slight red color on my face.I took the tablet with breakfast and proceeded to get the kids ready for school. After about 40 mins I felt warm and then I felt like my skin was burning and my face was really hot. I went to the mirror and yikes..I could have been an oompa loompa except I was red not orange. Well after about another hour my redness began to fade slightly and now at 2hrs I am almost back to normal. I tried to ring the Tecfidera (MS Alliance) help line for advice but it was an answering machine…I hate that! So I guess now all the excitement is over I can get on with my day and look forward to tonight when I have my second pill! I will try to ring my MS nurse late today to check in with her and get her opinion whether I had a average reaction or if it was more than that. So ironic that I had this type of reaction because my main complaint with Rebif needle was I had red and bruising site marks all the time and now I have had my whole body red I am beginning to wonder if this trial of pills is going to work after all…ah the trials and tribulations of a pushy patient 🙂 Happy St Patricks day (Its 17/3 here already lol!)


Anonymous
3 years ago

Andy,

Put me firmly in the no pin cushion camp! I took both drugs and have to go with Gi. Too many SEs for me to continue Tec. But everybody’s different. Most people have some digestive issues with Tec. You take it twice a day instead of once with Gi. Gi never bothered my stomach in 4 years but I did sometimes have back and hip pains as was reported in the trials. Both drugs were clinically efficacious but bear in mind that they both have only been proven to slow the progression of the disease. I have steadily worsened which is why lem is so important to me and I would continue to seek it or watch for the next big thing. Don’t get complacent and believe that either of those oral drugs are more than interim treatments.


laurabeebee
3 years ago

Hi @melimo I read on here that taking an aspirin 30 mins prior to tec can help with the flushing – maybe someone with experience can verify if this works? 🙂

Happy St.Patricks Day, I’m in Northern Ireland so 40 mins to go here lol


Anonymous
3 years ago

Melimo,

That is what my experience was. Sometimes better, other times worse. After 1.5 years in the BG-12 (Tec) clinical trial, I got so sensitive that I would turn red all over from head to toe and have mini relapses. Most people do not experience that obviously as it literally is a $1 billion drug for Biogen. I was really happy when Gilenya became available. After the first few days it was hard to know if you were even taking something. There were some problems along the way but a very big advance if you ask me for 2010! Now after 4 years I am moving on.


Anonymous
3 years ago

That is true about the aspirin. I cannot take aspirin so forgot about it. Give it a try and report back!


caterpillar
3 years ago

I took aspirin before taking Tecfidera and flushing was not a problem at all. There were other issues, though ( abdominal cramps and other gastrointestinal problems). In the end I had to stop Tecfidera after about a month as I got an allergic reaction ( hives/ urticaria all over my body).
I am on Gilenya now.
Tecfidera, like everything, works for some people and does not work for others 🙂


rose99
3 years ago

@johnathanmac I totally sympathise, I was on Avonex first but most of my hair fell out and I could not cope with the deep injections. Then I moved on to Rebiff which ruined me and I wish they had warned me it would give me permanent rhinitis, which along with my hayfever is like having flu…all the time! The rebiff also gave me inexplicable hip and knee pain. The knee recovered but the hip never did and the pain is so bad at night I cant lie or sleep on it. When I then did have a relapse the clinic brushed it off as ‘but you have a weak hip on one side don’t you?’ rather than realising that if I cant walk for 3-5 days then surely it was a relapse and not just a weak hip! It took 6 months to fully heal as I missed the window to take steroids and instead relied on my trusty cane to get me through the tough days. I then tried Copaxone….have to say, not that bad but I am also in the ‘don’t wanna be a pin cushion’ camp as I cant stand needles and it became a chore each day that got dragged out more and more till the stress of having to do it, was affecting my health. So here we are on Tec and hoping it is not too bad or that I can at least overcome the side effects. The first day I was red and scratchy and itchy but it was not as bad as I thought and so here is hoping day 2 is not any worse! I think we owe it to ourselves to give everything a go in the hopes we can slow down this horrible disease. Be well xx


melissa-g
3 years ago

I’m currently being offered tecfidera after stopping gilenya a few weeks ago due to low lymphocyte counts. I’m nervous to start it after reading everyones side effects and almost would rather go back on the gilenya.. not even sure if they would let me do that though. So confused!


Anonymous
3 years ago

I agree with you. Suggest going to every other day dosing. Others have done that including myself. Seems a shame to totally abandon a good option for a symptom that can be managed.


adbhoy
3 years ago

I am as red as a fecking lobster right now because of this. It is getting to the point that I would rather not take it anymore so the flushing stops 🙁


Anonymous
3 years ago

My whole body would react sometimes. My abdomen would turn red and get super sensitive. It never went away for 1.5 years while I felt compelled to continue using it. I eventually started having massive reactions where I would not be able to hardly move. I never heard anyone else complain of that but I am sensitive to most drugs at first and I was in a trial taking 3 pills 3 times a day. I used to hold my breath every time a dose was due. I guess they figured out that it was too much of a dose! Most people get past SEs after 1 month. It is Biogen’s biggest selling drug.. a blockbuster! I am grateful to have different options to try now. Everybody is different and we need the options! Thank goodness for the people willing to try these drugs during the trials!:-)


rose99
3 years ago

Well it is day 2 and so far I have had a bit of flushing, redness and was itchy as well. It wore off after 2 hours although the fatigue has gone through the roof. I was stuck in my chair for 2 hours as I could not move and was half asleep…..that said I think I am getting off lightly and so lets see what the rest of the week brings and indeed what a full dose does as I am only on a half dose for the first week.


rebeccalowe
3 years ago

@melimo sounds like you’ve had a similar reaction to me when I started. I was assured by anyone I spoke to that that was pretty normal and would less over the next few months. It took about 6 months for that to stop being a regular occurance for me and now it happens very occasionally. I stuck with the drug and it’s been 14 months now. For the most part I’m happy with it and it seems to be doing the job. I hope it works out for you!


melimo
3 years ago

Thanks for all the advice! I am on day 2 and no more symptoms which is great for the moment but the pesky rash I reckon will turn up again. I will try aspirin next time 🙂


rose99
3 years ago

Has anyone had any back pain on Tec? I had awful lower back pain last night and for the whole night. It really disrupted my sleep and I hope it is not a regular thing……


katflowers
3 years ago

Update – day 9 of tecfidera. The rash on my arms has gone and I am no longer flushing a couple of hours after taking it. Tummy is fine (so far).

I take a 75mg asprin 1/2 hour prior to tec. Breakfast my MS nurse advised has to be cereal with full fat milk, 2 pieces of toast and then full fat yogurt (quite hard when you’re not used to having that size breakkie) but it seems to work. Then asprin again in the evening, a normal meal and more full fat yogurt.

x


mybrainhurts
3 years ago

30 years of Tecfidera/fumaric acid experience here!
“WTF?!?” 🙂
Okay, rewind 30 years ago, I was one of the first ones in Germany who was treated as a little boy with fumaric acid due to hefty psoriasis.
What most of you are describing there (flushes, stomach ache, etc.) is exactly what I remember. I used to take it twice daily for about 2 years or so and most days I had no choice but curl up on the couch and wait for the heat and nausea wave to roll over – not pleasant, but like most things you get used to or work around it at least!
In about 3 weeks time I’ll find out if Tecfidera is the weapon of choice again, so let’s see if I’m still as shy as ever (red flushes!) 🙂


jujubee
3 years ago

I too am on Tecfidera, I was just diagnosed in December 2014 and have only been on it for a month (first meds for it) I’m not too sure of how I feel about it. Tingleyness-ness wise it has dulled my numbness. BUT it seems to sometimes make me nauseous, almost always have GI issues and flushing symptoms. but honestly I still will deal with the symptoms to avoid the numbness that I had.


Anonymous
3 years ago

Hi I started tec in February after years on rebif so happy no more injections I have had flushings, itchy skin but no stomach cramps I think I seem to have got off lightly so far after reading some of the other stories as I only get these reactions occasionally so fingers crossed.


Anonymous
3 years ago

I think Biogen refined the drug during the trials to try to minimize SEs and make the formular proprietary. In other words it is different from the straight up fumeric acid used by Germany 30 years ago for psoriasis. I find it interesting that they advise taking aspirin before taking a drug that can cause GI symptoms. Aspirin can cause GI problems alone including bleeding especially when taken regularly. if you notice GI problems after starting aspirin, you may want to rethink it. Hopefully you have no problems and don’t need aspirin.


gemmat2014
3 years ago

I tried tecfidera before Xmas got into my 2nd week as I couldn’t handle the really bad cramps and diarrhoea,but I am on medication for colitis too so I couldn’t put my already bad stomach through that and I couldnt take aspirin the flushing was bad at times but bearable.so much happier with copaxone even though it’s an injection it’s nothing major x


darkangellis
3 years ago

Hi folks! This is my first time on the site so hello! *waves*.

Really interested in this feed as I’ve recently decided to give Tecfidera a whirl so am waiting to go back to the neurology dept to be kitted out. It’s my first lot of treatment (I was diagnosed with RR in 2013 but it was pretty sluggish at the start so we left it alone, but scans last year showed it was doing stuff again so thought it was about time we did something) so I’m part apprehensive part excited (which I’m sure I’ll retract if I end up bloated and vommy…!). Anyway lovely to meet y’all, good to see so many tips on here for how to manage symptoms, and it’s encouraging to hear that the symptoms tend to go after a relatively short time. I’m sure I’ll be back once Im actually on it…

CTS x


gemmat2014
3 years ago

Hello I was on tecfidera but it didn’t agree with me I lasted about a week and a half from starting but once the dose went up it gave me awful tummy cramps and diarrhoea,I have ulcerative colitis so I have a bad stomach that I take tablets for and I thought I’m UN doing what they are doing,by inflaming my bowels so I was at work felt terrible so I had to stop if I didn’t have tummy troubles to begin with I still doubt I could have kept on but I think some people can take aspirin which lessens symptoms but I couldn’t take that due to my stomach either so I’m on copaxone no side effects so far so unfortunately the table ts weren’t for me.but you have to give it a go or you will never know


melaniemann
3 years ago

Hi all. I’ve been on Tecfidera now for 8 weeks and the flushing is now sporadic and less severe. I decided not to take aspirin as, for me, the flushing lasts about an hour and I didn’t want to add any potential problems associated with it. GI was never great but hasn’t worsened either. I remember a conference in Oxford I went to 18 months ago and a leading specialist , after listening to patients comments about their symptoms, said “don’t look for pain/symptom free, but look for manageable”, so that is my yard stick. Everyone’s different and pain thresholds are different too and I’m lucky to have a high one.
It says on the info that symptoms will last about 3-4 months so I feel I would need to at least see that time span through, although my consultant said I could have the odd bout of flushing always.
I’ve never had to inject, but think that the side effects I’m having are worth not having to, so far.
Good luck to those of you who are starting it for the first time.


melissa-g
3 years ago

I’m due to start on tecfidera soon, and I’m a bit nervous about the side effects, but I’m really hoping its worth it in the long run!

To those who have been it for some time now, have you noticed any positives from it so far?


rose99
3 years ago

@melissa.g I have only been on it three weeks and have had a few side effects. At this stage I cant tell you benefits as I am still getting used to it, but it sure beats being a pin cushion! I find taking a tablet each day has helped my mood no end and I am soooo glad to be off the injections. Best of luck on Tec and let us know how you get on! Be well!
Rosa
x


galecapps
3 years ago

I’m not one of the positive cases for tec. I’ve been on it for now 9 months. At first with the full dose I had all kinds of problems including stomach issues and wanting to sleep all day. Stopped taking it for about a month during a move from Cali to Mi but as soon as i was settled nine months ago resumed. I have been fighting the daily nausia which never stopped and the then issue with extreme fatigue. Took aspirin daily but didnt help. I was diagnosed in 96 and am 54 years old. Never once did I have a major issue with loss of function in my legs or arms but three days ago I lost 100 percent of my leg use, 70 percent of my arm and hand use and the fatigue was soo much worse. I did feel out of it to the point its like having a high fever and you just want to sleep to get better only I wasn’t hot and did not have a fever.
I decided it was time to stop taking tec. I haven’t been back to a nuero yet but will be soon with new mri’s and I just bet there is a bunch of new white spots on my brain since taking tec.
For me, it was no good.
Today, 8 hours after not taking my last tec pill I feel a little more alert and am able to walk to the bathroom myself. Big improvement.
I wont be going back on tec, For me, its dangerous. I do feel it hurt me more then helped me in the long run.

Good luck everyone and make sure you see your neurologist regularly.


Anonymous
3 years ago

I’m now in my third month of tecfidera and had been feeling quite smug. My troubles were nearly all to do with flushing. While it’s not a great look, the nuclear tomato feeling was bearable. This week however the GI symptoms started. I’ll admit to being a complete wuss about pain, but this just floored me. It is awful. Paracetamol does nothing. I’ve been at work when it starts. I had to spend more time in the loo than at my desk. Nausea is awful, but I just can’t be sick, and I think that would help so much.
The great thing is when colleagues comment, “you look like shit” is a common theme. Cold, sweaty and grey. I can’t afford to keep taking time off sick for this, I’ll lose my job. Alternatives looking likely.


stumbler
3 years ago

@Spudnik46 , make sure you read this publication. It may help you to avoid issues at work.

http://www.mstrust.org.uk/shop/product.jsp?prodid=246


Anonymous
3 years ago

Thanks Stumbler, I’ll be parking a copy of the work info document on my manager’s desk.


pudding11
3 years ago

Hi everyone. I am new to the site 🙂 I was diagnosed with MS just over 2 years ago. I was not put on any medication as I was told by the nurse at the time the side effects would be worse than any symptoms I have. To date I have been incredibly lucky and my only symptoms have been numbness/tingles in hands etc and of course the dreaded fatigue. My neurologist started pushing the idea of medication last year as she said I should start it early but I resisted as I was waiting for tecfidera to be approved in Ireland and didnt want to start injections if it could be avoided. I am considering starting it in a few months as it has now been approved here but I am still wary. My symptoms have not gotten worse, if anything exercise etc has made them even less frequent. I worry that if I start this and the side effects become too much I will be forced onto another medication that I dont want. Has anyone had a decent experience overall with tecfidera? I see alot of people experienced a good few issues to begin with but wondering for those who stuck with it, how did it turn out?


Anonymous
3 years ago

Hi been on this now since Feb had a few flushings at the beginning but just an odd one now and the occasional itchy skin I just take an antihistamine tablet and it disappeared quickly so far so good no complaints.


pudding11
3 years ago

Thanks yasmel its good to see a fairly positive experience with it. Have to admit when I read flushing as a side effect I had no idea it could be as bad until I read some of peoples posts here so its good to be aware! Also good to know it isnt always that bad and antihistamines can help it.


jrdiddle
3 years ago

I switched from Copaxone to Tecfidera in December and it’s the best switch for me.
I still get a dry mouth, runny nose, occasional BRIGHT red flush and my stomach is a bit ‘tumberly’ now and then but it is so much better than injecting 3 times a week. after 3 years on Copaxone, I came to dread injecting!
I feel a lot better with myself too.
it did take a few months for my body to settle in with Tec but it is definitely worth it.

just seen the post date, lol. how you getting on? did you stick with it?


rosedayle
3 years ago

Hello,

I was on Tecfidera for 12 days. (Copaxone
for 14 yrs). It started out to be fine.
Three days into the 240 mg x 2 hit me hard.
I was really sick for 3 days. My Dr offered no
assistance with perscription meds to counteract
all of the really terrible side effects. I am off Tec
and on nothing until I decide. I WANT to be on this
pill. I don’t know ??? I may try Copaxone 3x per week.


melissa-g
3 years ago

@rosedayle did they have you taper up to the full dose or was it pretty fast to get on it. I think it makes it harder to adjust to when not doing it slowly, though I’m still having a bit of trouble even though I did it over 6 weeks!


Anonymous
3 years ago

Restarted tecfidera after the digestive tract horrors, working on a slow increase in doses. Without wishing to tempt fate things seem to be ok. I’m taking aspirin too, which my hiatus hernia objects to, as I’m told it can help with the side effects. Just have to wait and see. Fingers crossed.


rosedayle
3 years ago

Hi, I started with the starter pack, 120 mg twice per day for
seven days. Then 240 mg twice per day. The first 3 days on the
240×2 were ok, then, craziness. So sick. I want to stay on this pill
but I do not want to put my body thru that anymore, plus, I had to put
my entire life on hold. That is hard to do. Rose


graham100
3 years ago

OMG. So pleased my ms nurse told me not to go on it. It’s about the only thing she has actually ever told me that I’ve agreed with, and reading all of your crap experiences (no pun intended) lol. Pleased I took her advice. But good luck if you stick with it, and hope it gets easier. Got to be better to just pop a pill???


blueskys
3 years ago

Hi! I started on this medication and I didn’t have a good experience. You may not have my or anyone else experience. I’m experiencing disability and dispute my knowledge it didn’t keep me from going here. I am currently on Tysabri, although I’m not changing, I’m newly diagnosed so I have little experience. Please do your research before you take any med


blueskys
3 years ago

Take an aspirin each time before you take this med. It really helps.


blueskys
3 years ago

Hi!I enjoyed reading your post but I’m very curious. How long did your bodily functions continue to be down? So far I’ve been down for close to a year after taking this med. Once I started to feel and notice a change I stopped taking it but the damage was done. I would really love to get more information on how you overcame it.


wilf
3 years ago

I’ve been on tecfidera since February and it’s brilliant. I’m never going back to injections. I was on avonex for 9months which was good, no relapses but a depressant. I’m now much happier, just pop a pill twice a day, most ms symptoms have gone and occasional hot flushes are easy to manage.
@blueskys – ms tends to be really active when new but in my experience does calm down and settle with time. If I overdo things it does let me know though!


blueskys
3 years ago

@wilf..thanks for the information,I was diagnosed last year and I’m learning new things each day. This may be a good drug but for my first medication I feel I should have started something else. This disease is very unpredictable so I don’t know what to expect. I am depressed majority of my days and my sleep pattern has changed significantly

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