Feeling discouraged and frustrated with Tecfidera

Question

Hey everyone,

Hoping to get some words of encouragement. I'm trying to slowly wean myself back onto Tecfidera- I had to stop during day 6 of the 240mg twice a day due to severe stomach pains. So right now I've been taking 120mg once a day for about three weeks and all of a sudden the stomach pains started again. I was supposed to up my dose and begin taking 120 mg twice a day this weekend but now I am feeling like giving up. For me, the side effects of this medicine have been worse then any of my MS symptoms and I kind of want to just hide in bed. Anyone else go through this and make it through? It's hard going to work feeling sick. I'm wondering if maybe the dose is too much for me (I weigh about 100lb) and my stomach just can't deal. 

Jokes or funny dog pictures for a raise in morale would be warmly welcomed!

Thanks
-Lauren

New_phase_inlife · Answer

I am seven days into the 240 mg dose and am feeling awful also--tomach cramps, my RA is much worse and I also feel like curling up in a ball.   I was fine the first week on the 120 mg dose.   This is my first venture into a DMD and I am really hoping this is just the 'rite of passage' because it is not fun.   Thanks for the words of encouragement and I hope the best for all.   By the way, does anyone know why the RA would be so much worse on this med?

Lor301 · Answer

Thanks so much for all of the support and encouraging comments.  They were really helpful to read over the past few days.  I am feeling a little better and have increased my dosage to 120mg in the morning and 120mg at night.  I have noticed that at times my heart seems to be beating faster than normal, but it only lasts for a few minutes and may just be a coincidence since I don't think any side effects of Tecfidera involve the heart.  Alex your dog, Fiona, is adorable, thank for you sharing that with me.  I am so lucky for having found this community.  Thanks again to everyone for the kind words :)

GrannyJo6 · Answer

I've been taking Tecfidera for almost a year now, and I am one of the fortunate ones who didn't have digestive problems. My neuro suggested taking it on a full stomach. Maybe that helped, or maybe that is just how I reacted. I hope you can get accustomed to it, because it is SO much better than the shots! I was on Avonex for 10 years, but it was doing damage to my liver, so tried Copaxone for a year. Not good! So, hang in there. My doc also said it is safe to take OTC remedies to help with the digestive symptoms.

mikeysmom1995 · Answer

So sorry to hear of your issues with Tecfidera. I too had horrible stomach issues, mainly very bad cramping. I could not even work. The pharmacist suggested a slower titration. Low dose 2 x a day for 2 weeks, then low dose in am and high dose in pm for 2 weeks. Then onto the high dose 2 x a day. I still had minor stomach issues but nothing like I did on the regular titration. I also made sure I ate before taking it and stuck to a bland diet.
Don't give up as it sure beats doing a shot. I sure hope it works out for you.
Regards, barb

HVAC · Answer

Posted a picture of my new Puppy Fiona on my photos

Alex

LoveMyBostons · Answer

Lauren,

I've been on Tecfidera for almost a year now. I love it! 

I did have stomach trouble the second week (first week on the full dose) but I didn't give up. Thankfully that went away soon afterward. 

I really do feel good on it. I hope that you can get through this because I do feel like it's a good medication. I feel stronger and have more energy than before I started it.

Corriel · Answer

Hi Lauren, I will be starting Tec today or tomorrow and did read somewhere that weight did not affect dosage. There was also mention of certain meds, depending on the symptoms, that were available in the short term to get over the initial phase when symptoms peak then taper off.

I would definitely call your neuro or your drug company to check and see what they have to say.

Hugs,
Corrie

karryon55 · Answer

Hi Lauren,

I am so sorry to hear you are having a rough time with your DMD. I have not personally tried Tec so hopefully someone who has can offer some advice to you. 

I have had Rheumatoid Arthritis since a very young age & I have been on DMD's one after the other & usually on two at any time. I also have MS & some of the DMD's are the same for both conditions. Regardless any DMD is a challenge to get used to particularly if your one of those people who tend to have the side effects. 

I remember some of my earlier DMD's were so harsh I would spend my days with a vomit bucket nearby & always close to the toilet. I learnt that I wasn't one to tolerate these Meds well at all so it took a lot of tweaking by my docs to get me more comfortable. I learnt that I was much better off with an injectable DMD as anything oral would cause problems with my stomach. This wasn't always possible though so often when introducing a new DMD I would have to drop down the dose again until the side effects settled & my body adjusted.

I can only suggest you make contact with your Neuro & ask him what you can do to help yourself right now. You may be right in saying the dose is too high for you petite size so ensure you check all of that out with your Neuro.

I certainly have a funny dog as mine is a Cavalier King Charles Spaniel with 3 legs & it is pretty funny when he tries to scratch his ear with the missing leg lol. I remember when I was on some pretty harsh DMD back in the 90's before some of the great new drugs became available & I was an absolute mess. I carried a collapsable vomit bag, had the chills all the time, lost a lot of hair & had to wear a mask because any bugs could be deadly now that was not a pretty sight to see but I got through it & I'm here to tell the story.

Give yourself a big hug & congratulate yourself for doing so well. If in the long run you can't tolerate this DMD then I would consider trying an injectable so it bypasses you tummy & hopefully reduces the side effects for you. 

Cyber Hugs coming your way today,

Karry.

Invida · Answer

Hi. I don't have any experience with the medication, but I just wanted you to know that I wish you the best of luck and I'm sure there will be lots of helpful information left for you here very soon. And maybe even some dog pictures. :)