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Old 08-23-2013, 03:09 PM #11
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Well Have not been here for awhile, but wanted to see how other people are fairing on this new drug Tec. I see a few on other sites doing ok and some not so ok.

I started Tec on July 28TH, the 1st week was easy no side effects. When I went to the 240mg dose then a few side effects started to appear. So far just the flushing which lasts about 20-40 minutes, occasional runny nose and very minor nausea.

So I shall see what the future holds for this journey. Anything is better than the shot for me. Good luck!
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Old 08-23-2013, 07:12 PM #12
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Good luck to you jmiller..
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Old 08-29-2013, 09:18 PM #13
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Oh man, I also had a Tecfidera reaction from hell! Same thing, lose dose - perfectly fine. Two days after switching to the higher dose I start to get intense stomach cramping and nausea and two days after day I vomiting every four hours after I take the pills. Stuck with it for three days hoping it would go away (with help from every anti-nausea med in the book) but no dice. Discontinued and back on Copaxone. Don't like the needles too much but they are a hell of a lot better than vomiting and needing to make up excusing for quickly leaving work and friends!

Hang in there!!!
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Old 08-30-2013, 10:07 AM #14
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Neuro had me stop for one week. Now Im taking one 240mg once a day for 3 weeks then Im to start taking 2 tabs a day. I took my first dose last night and I had the most INTENSE itching Ive ever had since I was pregnant. My arms and hands are so red and look like they were bleeding. I had to roll up my sleeves to itch because I couldn't itch thru the material. My dh had to force my sleeves down and he sat there and held my arms down so I couldn't scratch. I clawed myself so bad. The nurse called me today to see how I was doing and I told her all this and she is checking with neuro to see what to do. Im so tired of meds.. ugh!
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Dx RRMS April 1992
Yearly flares from 92 to 11
MS induced seizures 2002
Flare Oct 2011
Flare Dec 2011
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Betaseron '02, Copaxone '12, Tecfidera '13
(allergic reaction to all)
No longer taking any MS therapy meds
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Old 08-30-2013, 10:47 AM #15
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KL - I am so sorry that you are going thru this. It makes me mad that medicine to help us makes us so unwell.

It seems that your body is telling you in every way possible - out both ends and thru the skin- that it does not want it.

I do remember your situation and why you need this to work and I do hope that it does but soon!

Best to you,
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Old 08-30-2013, 01:08 PM #16
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Kitty, so sorry you're having such adverse side effects. I do hope they improve soon.

I stopped Tysabri because it was not helping me at all. I spoke to my neurologist about going on Tecfidera. I have to be off Tysabri for four months, then I'll be starting Tecfidera.

I didn't realize that so many people got such bad side effects from the drug. I'm still up to trying it, though.

After having had MS for over 20 years, things are speeding up instead of leveling off or going away (lol). I've been falling a lot, and we got an hydraulic lift since my hubby isn't able to get me off the floor and neither is Monty. My legs are too weak to help. I don't want to give up on MS drugs. I want to keep trying until something hopefully actually works for me.

BTW, Monty is doing great. He's full of life, playing and going for walks, and enjoying life.
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Old 08-30-2013, 02:26 PM #17
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Yeaaaaaa for Monty!!!

Sorry Mair, you can't seem to find your cup of med yet. Monty's not
giving up and neither are you..
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Old 08-30-2013, 05:21 PM #18
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Well neuro called back and Im to take 2 aspirins and 1 benedryl before I take the tec and if needed get some lano something cream for the itching, and if the big D shows up again, take the lovely pink drink. I tell ya, I gotta sit back and laugh or I am gonna kill someone.

Take this med so that med wont give you side effects, take this med so that med will work, if that doesn't work we'll put you on this med which could cause a brain infection, but don't worry, we'll watch you. WHAT!?!?! Im so done sometimes. I made sure to tell my neuro that if tec doesn't work for me, this is it. NO MORE!

Stick a fork in me IM DONE!! My body is doing enough damage, I really don't need any more help damaging it. Who knows what all these chemicals are really doing. We're all really going on blind faith that this is it! This is the miracle we all been waiting for! Whether its one of the shots, or one of the pills, its all blind faith.

I heard someone call us "sheep" before. Not on this site, but another site that I no longer belong to. I am not a sheep, but willing to try something to slow this disease down. I don't think that anyone who is trying to live and willing to do anything to do it, should be called a sheep! Ok, off that soapbox again. Maybe tec isn't for me. I'll be finding that out in a few weeks. If not, that's ok, its not the first drug, but it will be the last drug.
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(allergic reaction to all)
No longer taking any MS therapy meds
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Old 09-09-2013, 08:45 AM #19
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Default I had to re-start Tecfidera

I felt great on the Starter Dose, but when I hit the full dose I got stomach cramps, heartburn from hell, and all fuzzy. By day four, after what my husband and I call the "Exorcist Hour" I was done.

But after a few days, I remembered how good I felt on the starter dose I wanted to try again. And this is how I did it.

I re-started with 240 mg a day until I felt good. But, to get to that point I did the following:

1. I went on a bland, almost liquid diet. (Toast, tea instead of coffee, potato soup, jello etc.)

2. I ate every two hours whether I was hungry or not.

3. I treated every symptom aggressively for a few days then backed off to see if my body had adjusted. I took diazepam an hour before the pill for the stomach cramps. Benadryl for the itchy flush. Maalox for the heartburn etc.

By day four, I eliminated the Benadryl with no problems. The next day I tried a pill without the diazepam. That worked. I had to take the Maalox for about ten days, (and still need one every now and then.)

4. On day ten, I felt really good, so I started all over again with the almost liquid diet, the diazepam, etc. This time, it only took 3 days to "adjust."

If you think this method will help, give it a try. If you've found something that works for a side effect, please share! For those who feel good on the drug, anything that will help you get past the first couple of weeks is worth it.

And personally, I think if you can't take the starter dose, this is not the drug for your disease. Any other opinions on that?
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Old 09-09-2013, 01:34 PM #20
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Quote:
Originally Posted by jfcincy56 View Post
I felt great on the Starter Dose, but when I hit the full dose I got stomach cramps, heartburn from hell, and all fuzzy. By day four, after what my husband and I call the "Exorcist Hour" I was done.

But after a few days, I remembered how good I felt on the starter dose I wanted to try again. And this is how I did it.

I re-started with 240 mg a day until I felt good. But, to get to that point I did the following:

1. I went on a bland, almost liquid diet. (Toast, tea instead of coffee, potato soup, jello etc.)

2. I ate every two hours whether I was hungry or not.

3. I treated every symptom aggressively for a few days then backed off to see if my body had adjusted. I took diazepam an hour before the pill for the stomach cramps. Benadryl for the itchy flush. Maalox for the heartburn etc.

By day four, I eliminated the Benadryl with no problems. The next day I tried a pill without the diazepam. That worked. I had to take the Maalox for about ten days, (and still need one every now and then.)

4. On day ten, I felt really good, so I started all over again with the almost liquid diet, the diazepam, etc. This time, it only took 3 days to "adjust."

If you think this method will help, give it a try. If you've found something that works for a side effect, please share! For those who feel good on the drug, anything that will help you get past the first couple of weeks is worth it.

And personally, I think if you can't take the starter dose, this is not the drug for your disease. Any other opinions on that?

Thank you for this. I have such a hard time swallowing that Im the only things that I eat are mashed potatoes, yogurt, and pudding. I been choking taking my pills and that tecfidera is one big pill, at least to me it is. I think I am down week one of just one pill a day. I have 2 more weeks of one pill a day. I dropped the Benadryl last night and no itchies!! yea! I did develop the heart burn tho so I am taking something for that. Everynight I open my pill box and anymore I feel like a drug addict with all the pills in it.
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Dx RRMS April 1992
Yearly flares from 92 to 11
MS induced seizures 2002
Flare Oct 2011
Flare Dec 2011
Left disabled after 2 previous flares
Betaseron '02, Copaxone '12, Tecfidera '13
(allergic reaction to all)
No longer taking any MS therapy meds
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