Tecfidera from hell
 

I did the first week of 120mg with absolutely no effects at all. Figured what a breeze. The second week, 240mg, shut my mouth and slap me silly. Nausea, upset stomach, the big D, all constant, reprieve.

With my swallowing difficulties I am already down to just eating rice pudding, yogurt, mashed potatoes and forcing liquids. I never take the tec on an empty stomach. I feel miserable since the increase in the dosage.

Have to wait to call neuro since he has such convenient hours of wed and thru 8-4 and fri 8-12. I tried calling the numbers provided with the drug and they said 'No can help you, you have to call you doc that rx you the med'. Yeah, thanx. Plus you add all the pain and spasms, Guess Im doing alright. Sarcasm is great ain't it :rolleyes:

Sorry you are going through such side effects and can't seem to get any advice until Wednesday :eek:.

Yes, sarcasm IS great...but suffering is NOT.
Hoping and praying that you get this sorted out and find a medication that works for you straight away.

Maybe try calling a pharmacist for advice until you can get through to your doctor?

With love, Erika

Oh my gosh, this medicine isn't sounding too good right now from most accounts that I read. I hope the symptoms settle down and you can stay with it. Can you cut it down to the lesser dose until you hear from the doctor?

I felt your pain. I made it on tec for 3 weeks before my neuro had me stop. The nausea, diarrhea, fatique, and 24/7 stomach cramps were just too much to deal with. All my functions decreased on tec. My walking declined, and had to use walker or scooter to get around. Not impressed with tec.

I am supposed to start again in a couple of days, 1 240 mg a day. I don't know if I am brave enough to go thru that again. I am just starting to feel better.

Many TEC users feel this drug needs to be increased more slowly than it is now. I made it through without the usual side effects until about day 19 when I got a headache/head pressure/ringing in the ears/dizzy that just got worse and worse until I gave it up on day 25. Doc called it an adverse reaction.

I noticed on some sites that 60% of TEC users sail through it but the other 40% really have some issues. I was really hoping to be in that 60%.
You can't take a lesser dose of this drug because it is a filled capsule. Perhaps you can ask your doc about a different dosing schedule, but I think only the MS specialists are really on top of this.

Sorry that you are in the 40% :hug: If you get the side effects pretty bad, the drug is a drag!!!!

sorry you feel like ****, I hope it is only temporary. I have heard/read that for some patients this is a temp thing until the body adjusts. For others it means they are in the "cannot tolerate" category.

Regardless of which, I hope you get relief from this and fast!

hi kitty,
i'm very sorry you're going thru all this. i would 2nd the advice to cut back the dose or stop til you can talk to your dr.

your MS sx's sound devastating. i really feel for you. i'm sorry about what MS is doing to you.

Some filled capsules can be taken apart. I do this often as I like small doses of some supplements. I put part of the filler into about an inch and a half of liquid which is half water and half juice, and swallow that, keeping the rest of the capsule on top of the bottle until the next dose.
This drug sounds so awful I can't understand what its purpose is. What does it do?

Suppose to do what all the others are suppose to do, slow down progression. It better start to ease up soon or Im calling it quits. Theres only so much a body can take. I'll see if I can hang in there a few months. Maybe things will calm down.

My new and wonderful neuro at the Cleveland Clinic in Vegas is leaning toward putting me on Tecfidera. She explained the side effects and said if you can get through the first couple of months usually the side affects subside and the medication begins to work. I had gone in to this adventure with the new an improved MS doctor with a completely open mind and willing to do what I was asked to do. So I am very nervous reading about your experience with this medication. but, I will give it a try should she make that decision.

I hope that you either become tolerant of the meds and it works for you or your doctor finds another better med for you. it sounds just awful to go through what you are going through. so sorry. this M/S stuff is a wobbly road indeed.

but at least you have us! lol....