I am wondering if we could post things that have helped us get over stomach issues from Tecfidera. I know I would find it helpful. I am going back down to 120 twice a day as well as adding Zofran for the next two weeks. I will not start this till Thurs. and I will let people know how it is going. I look forward from hearing from others on how they are dealing or dealt with stomach issues. It is good to have company through this journey
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Overcoming Tecfidera
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I started OTC prilosec every morning for a week prior to starting Tecfidera. Then have continued ever since. Also, I always take the Tecfidera with food - with breakfast in the morning and with icecream or graham crackers (sometimes with a little peanut butter) in the evening. I think it helps.
Eventually, I plan to try weaning off the prilosec - after I've been on the Tec for a couple months. Overall, I've been pleasantly surprised. Generally, if someone is going to have stomach issues it will be me!Symptoms 8/09. Dx 1/10. Avonex 2/10 - 1/11. Copaxone 2/11 to 5/13. Tecfidera 5/13 to 2/15. Gilenya 12/15 to current.
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Tecfidera symptom management
I started 5 weeks ago on the approved regimen (120 2x/day for 1 wk, then 240 2x/day). I try to take my pills roughly 11-13 hours apart. Following the first dose, I had issues with heartburn- and at that point I started to take my MD's advice seriously, so I took Tagamet ~15-30 minutes prior to each dose subsequent to the first dose.
After ~4 days I developed an ugly looking rash on my arms and thighs that went away over the following 4 days, although it didn't itch or otherwise annoy me. Worst for me was that starting at roughly 9 days my stomach just felt unsettled, despite the Tagamet, I had some GI issues (a little gas, some loose stools, and an overall feeling like I was trying to digest a lead weight).
It seemed to me that Pepto Bismol helped these symptoms a bit, but I never found a perfect solution for the stomach "unsettled" problem. It wasn't enough to keep me from working or sleeping, so I powered through. On day 19, all remaining symptoms vanished completely and I've been trouble-free since then. I may have had one brief flushing incident sometime in the first week, but it was so minor I barely registered it.
My neuro suggested I take the Tagamet (it seemed that a minimum of 15 min before the Tecfidera worked best) and that I take the Tecfidera on a full stomach.
My suggestion is that everyone having troubles take full advantage of supporting symptom treatments as necessary-- Tagamet, Pepto, Gas-X, anti-nausea meds, etc. Waiting out the symptoms seems to work for some. The prescribing info sheet (assuming you have a magnifier to read it) appears to indicate the Tecfidera is absorbed more slowly if you take it on a fatty meal (e.g. ice cream, bacon, beef brisket, etc.)- which suggests to me that side effects could potentially be mitigated by taking pills on a fat-heavy meal.
From my perspective, the Tecfidera is way better than the Betaseron injection site reactions (roughly 11 years of Betaseron, ~10 of which were rife with site reactions to which my previous neuro was entirely unsympathetic- on a side note, I strongly recommend firing docs who don't take your concerns seriously).
I tried Gilenya, but threw in the towel after 6 months of feeling like I was on beta blockers- tired, slow, and terrible hives from contact with allergens which were evidently residue from my dry cleaners' process. I'm a huge Tecfidera fan, and the maracas sound the pills make is just an added bonus- I'm ready to join the next Mariachi band to swing through town.
Best of luck to everyone-
j
** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **
j
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Originally posted by ewizabeth View PostWhen I was very thin I had worse side effects from treatments. When I gained weight, the symptoms lessened. I wonder if those who are thin or underweight have worse side effects?
http://www.msworld.org/forum/showthread.php?t=126704
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I am on week 4 and I didn't have side effects till last night. My stomach burned so bad and it does today also. I really thought I was in the clear with side effects. I just wonder how long this side effect will last. Right now my stomach is on fire and have nothing to take so I hope it goes away soon.
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Originally posted by Teddy123 View PostI am on week 4 and I didn't have side effects till last night. My stomach burned so bad and it does today also. I really thought I was in the clear with side effects. I just wonder how long this side effect will last. Right now my stomach is on fire and have nothing to take so I hope it goes away soon.
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