Tecfidera

Hi everyone! Has anyone on here had bad reactions to Tecfidera that weren't documented by the manufacturer? It stressed my body out more and made my cognitive and fatigue worse.

[Jesmcd2 CommunityAmbassador]

Hi Hidden and welcome to the chat. I'm on copaxone. So can't help you with the tecfidera

[Jesmcd2 CommunityAmbassador in reply to Jesmcd2]

Lol pushed the button to soon. I have heard good things about it tho. Others on here will be able to answer you better. Welcome again

[Hidden in reply to Jesmcd2]

Thank you for your reply! Have you had any problems with kidney function being on Copaxone and how long have you been on Copaxone?

[Jesmcd2 CommunityAmbassador in reply to Hidden]

Hi, l was dx'ed last yr in feb. And my Dr put me on the 40mg 3x's a 2wk that day. I haven't had any problems with it at all. I have only had 1 relapse.

[CherieMSCN]

I took it for 6 weeks and felt horrible every single day of that time. I was continually nauseous, had almost daily diarrhea and when I had flushing from it, I would turn purple red, swell with bumpiness under the swelling and raise my temp from 96.8 degrees (yes, I have a normal temp well below the average 98.6) to 100.8. That ramped up my heat impacted symptoms (vision, elimination, gait, cognition) My doc , after seeing one of these "flushes" determined that I was having extreme reactions to the med and took me off it. It also seemed to raise both BP and blood sugar which went back into normal range when the Tecfidera was stopped. I called the Nurse at Biogen and this is all reported to the Medical Safety department already.

[Jesmcd2 CommunityAmbassador in reply to CherieMSCN]

Wow CherieMSCN sounds like it was a horrible experience. I think lm going to take back my comment on it. I hope they caught it pretty fast for you.

[Hidden in reply to CherieMSCN]

Wow I'm so sorry to hear that happened to you!! Thank you for sharing! I turned bright red. I also have cognition made much worse and balance/walking issues. It also made the fatigue much worse as well. Elimination; do you mean bladder issue? My now ex neurologist thought I was crazy or making it up how it effected me. I could not tolerate it either. I never thought to report it to the Medical Safety Department. How do I do that?

[CherieMSCN in reply to Hidden]

Call the MS Nurse at Biogen Used to be MS Active Source but the renamed themselves within the past year and tell them that you believe you have had serious side effects from Tecfidera. They have you in their system and can find you by name and birth date. Tell them how it affected you and for how long. For example, my "flushing" and temperature elevation lasted for about 3-4 hours with out benadryl and about an hour with so EVERY day was pretty much lost to me for productivity and comfort.

[KatB77]

Hi. Haven't tried tecfidera but just took myself off of gilenya for similar reasons. I went several years with no new lesions and within the 6 months of being on gilenya I developed 2 new lesions. My cognitive functions have severely declined & the fatigue is bad. I've tried several of the MS meds over the years & found I have done better with just diet & exercise & no steroids. I was diagnosed in 1995 so I'm kind of a veteran now haha. Best of luck to you on this crazy journey ❤

[JRootes]

I believe I have similar issues with it plus extremely low white blood cell counts. My mobility is getting worse, and my memory seems worse.

[Hidden in reply to JRootes]

Yes yes it made my mobility worse and cognitive/memory much worse too. Along with making fatigue worse.

[tnolan2006]

Haven't taken it, but from what I've read, tecfidera, gilenya & lemtrada are tough to tolerate. At least w/ lemtrada, you're only dosed for a week & it's effective. I've taken Betaseron & it was hard to tolerate for me. I've also taken rituximab, copaxone & cladribine, all of which were easy for me to tolerate, cladribine probably being most effective, more than tecfidera. I think it's better to take something to slow the damage, than not to do anything and let progression keep going. I have high hopes for oral cladribine to be approved soon. It's available now only off-label as an injectable, possible but difficult to get. It's relatively cheap also.

[ReitaEvans]

I have been on Tec for just over a year. I developed joint pain (jaw, elbow , ankles) which I never had before. I told the nurse & dr but they didn't think it was related to the med. also hair loss is getting bad now. None of those are listed as side effects in any of the literature or web sites that I can find. The dizziness & nausea got worse and has stayed that way since I've been on the Tec. Well.. Mobility due to ankles (feels like sudden tendinitis ) is worse than before. For sure the cog fog & fatigue is horrible. I'm sorry I'm all for the oral med but quality of life should be important as well 😞 I've learned to deal with the flushing which is very uncomfortable but pales in comparison to knots from shots to me.

[CherieMSCN in reply to ReitaEvans]

ReitaEvans Is Tecfidera the only med you are currently on? Do you also take a Statin like Lipator or Crestor? What you are describing with the joint and tendon pain is a fairly common side effect with that class of drugs used to lower cholesterol.

[ReitaEvans in reply to CherieMSCN]

No only Tec . My cholesterol is great so I don't or have never taken any med for that (so far). I keep hoping that it will pass but so far nope 😞

[CherieMSCN in reply to ReitaEvans]

The other class of drugs recently disclosed to cause tendon and muscle pain is the Fluroquinolone antibiotics like Cipro or Levaquin that you might have taken for a UTI

[ReitaEvans in reply to CherieMSCN]

Nope I have been on any antibiotics since last year. Then dr took me back to one dose of Tec when it first happened and the jaw & elbow pain went away just like that . I was shocked. After a week they put me back on two dose and witching a week jaw elbow & then the ankles started. Jaw & elebow are not as painful.. Just on some days . If it gets unbearable , to the point of not walking or eating I will complain loudly to my dr. But like I said I already told them & they believe it's a side effect and we're ready to throw shots at me if I didn't want to take this med. really? I chose this med because I did Not want shots.. Lol oh well..

[CherieMSCN in reply to ReitaEvans]

Shots , in general are a whole lot more effective with fewer side effects.

[Sukie427]

I have to say that I consider myself lucky because had any untoward effects from this medicine and it seems to be doing what it's supposed to do. However on a prior medication when it was new and it caused horrible abdominal pain which was not be reported symptom for that medication. These meds are all still new and I don't think that all the data are in yet, so people may have different reactions. If tecfidera is not working for you then talk with your doctor about trying something else that may be a better fit. Good luck

[Miriade]

Yes, I have my white cells down after 2years of medication, and I had a very bad skin reaction , cappilar, vaculitis all over my body with high intense purpure legs with pink red dots during more than 8 months. My arms still have some capilar exacerbations. I guess I will need to go to Dermatologist for treatment. My Cd3, Cd4, Cd8, plateletes, all went down very below the minimum for couple months. Plus I was exausted, not eating etc.

[Juleigh21]

I was on Tecfidera for a short time. I was so nauseous to the point where I was dry heaving. My gait became much worse and I felt very unbalanced while on it. However, cognitively I was much sharper. I loved that aspect of the drug.

[ReitaEvans]

I think my fear is switching mess & the others being worse and insurance not letting me go back to the lesser evil 😞 So I try not to whine & keep on trying.

[cloudbear]

i was on it for 3 months and it felt as if i was having a flare up the whole time i was more sore and in pain

[cloudbear]

im back on aubagio and lovin it

[ReitaEvans in reply to cloudbear]

Never tried that I'm glad you are doing better 😊

[cloudbear]

see if you can get aubagio

[Lucille3]

I have been in it for 8 weeks. My hair has been thinning and I feel more symptoms are happening. When I spoke to my dr she said it takes time to build ur system up to 6 mths to start notice remission. Hope that helps u

[Terrie7755]

I started Tecfidera in 2014. Within 6 months, I lost two teeth. Tecfidera can kill the nerves in your teeth and dissolve the enamal on your teeth. After I lost 8 teeth, I quit Tecfidera. That was 5 months ago a d the nerves in my teeth are good again. I belong to an online worldwide support group for people taking Tecfidera. We had many people reporting loss of teeth. It's currently being investigated by the FDA, yet Biogen refuses to list it as a side effect.