Tell us your GOOD Tecfidera experiences

[erica1000]

I have been a Copaxone user for 3 years and want to move away from injections. I was interested in going to Tysabri and did blood work last week but have found that I am JC+ so no Tysabri.

Today I agreed to give Tecfidera a try. I was a little hesitant because I have read a lot about GI and flushing issues as well as just feeling as if a brick wall fell on you.

Right now I feel good and I want to try something different but don't want it to make me feel blah or yuck. Most times I handle new meds with little problem unless it is a pain med.

I know that sometimes there is a "break in" period for your body to adjust to new things and I would love to read some experiences that others have had.

So those of you that have had a positive experience, please share. I would also like to hear from folks that may have started out rough but have evolved to good.

[MsLatte]

I've been fine

On Tec about 2.5 months now and so far so good. Started on a Friday working at home just in case. I will admit I was somewhat nervous about starting. Had some MINIMAL short term (several hours) flushing the first day and that was it.

At times my digestive system can be a bit sensitive but it was that way BEFORE starting the med. I have the usual over the counter meds ready but really don't need them any more than usual.

I do make sure to eat a balanced meal with some protein and a little fat. Low fat turkey bacon muffin at Starbucks most mornings then whatever I can manage for dinner after working long days; for example, will put a little avocado on the salad, etc.

Every body is different and I wish you the best.

[sunshine008]

glad for you! keeping it positive is always a good thing, even when it isnt' soo bright

for me, it's the fact that i seem to look more like me again..i hadn't for quite sometime. the ms had progressed and i looked worn out, woke up each morning exhausted, fatigued swollen head in a cloud. that is def getting better everyday!

so as everyone else is doing, i'm trying to ride out the negative and stick with the positives

[winstonzoe]

Ok here goes... Starting 4th month next week. Yes these last few months have been a little rough, but I feel myself coming out the other side. Minimal side effects, fatigue, some stomach issues, but nothing I couldn't handle. No flushing, itching etc. Some changes in appetite, but that is also going away. I'm at the point that I just have a carton of yogurt with morning dose and a regular dinner before evening dose. I'm doing well enough that my neuro wants to see me next April or May... That's when they'll do a new MRI. A little advice, wait until after the holidays to start & make sure to pre-medicate at first just to be safe. Everyone will react differently to the drug, so expect something & just do everything you can to minimize it. You'll have some bad days, but doesn't everyone? Hope this helps and let us know how it's goes. Becky

[PositiveMS]

3 weeks in

I'm like MsLatte. I had a half hour of flushing my first day, then that's it for side effects. Well, there has been random running of my nose, but that is hardly a big deal.

I was nervous to start, then nervous again to start the full dose after a week of half dose, but there was no need to worry. I LOVE not injecting anymore!!!

I hope you have a positive experience too

[MallyCT]

5 months

I have been on Tec since early July. Like most, the first couple of weeks were a little dicey with "basic" GI issues; however, not bad enough to pre-medicate before or after. By the second month, those issues subsided significantly -- to the point it is "all business as usual."

I do have some flushing but sometimes it is hard to tell if it is Tec or menopause. I never missed a day of work from the Tec, never felt super tired, etc. I say all this as I knock on wood!

Bloodwork has been "normal" (nothing unusual). I have not changed my diet significantly nor have I changed my day to day. I do eat prior to taking the Tec -- although the amount can vary from "full" meal to a normal-sized bowl of cereal with milk.

I feel great, better than I did on Avonex. I also feel that I am more cognitively "with it" than I was on Avonex. While I am not bashing Avonex, it was obviously a bit more than I could handle after a number of years. My first Tec MRI will be sometime in early 2014 and I am anxious to see what that yields.

I hope this helps and I wish everyone well!!

** 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. **

[REG53]

I'm in my 5 month with little to no side affects.

Praise the Lord!

[hope32]

Two months in (as of tomorrow) and I'm happy with it! Other than some increased fatigue/drowsiness, I'm doing pretty well. I had *some* GI symptoms but overall not that bad. I had flushing twice but only when I did not premedicate with aspirin. Definitely better for me than Copaxone or Beta!

[tl-tr3]

Only 3 weeks so far

but it's going well. Even though I am premedicating with baby aspirin , I have some flushing .... infrequently though. But I feel on fire when it does happen , mostly my scalp/head.

I also premedicate with Pepcid for the GI problems and I've had none.

In three weeks I've felt fatigued worse than usual only on 1 day.
I'm happy with how things are going and glad so far I made the change.

Good luck to you.

[OrangeMetal]

I'm still a newbie here. Was DXed in May as total surprise at 41. Went to a public hospital as I didn't have health insurance for the five day body numbness in hospital episode. About a month after that had a follow up and was rx'ed Tecfidera from choices I was presented. Got it in July and started in Late July.

I have had no symptoms since then (well, super major symptoms) as far as MS goes. And no Tec-type symptoms. It almost feels like I don't have MS if not for the Lehrmite's sign I got in June.

I did totally change my diet and following the Ann Boroch diet, and posted elsewhere on this, but not hearing much from the list serv. I really want to know if drinking coffee or beer will actually cause a relapse and the other foods that she suggests to stay off of.

But for now, I'm not sure if it's the Tecfidera that is helping, or the diet (sugar, gluten, corn, dairy, potato, the list goes on - Free) and the supplements that is helping me or a mix? Or just the mystery that I could perhaps not be doing all those things and the relapses will just happen when they do. I am also taking LDN at night.

My doc said I would have a "mild prognosis". I am unsure what this really means as I don't think he would get my hopes up like that as he is very common sense. I know it's controversial to say "benign" MS, but I still see it listed in the four stages / types of MS.

Anyone have what they think is benign, which is 1-2 attacks and more or less "normal"? Maybe I have to post this question somewhere else and maybe moderator could tell me where it could go.

[Don2480]

I am only on day one but anything beats the flu symptoms of interferon's and after three years on copaxone I developed an allergy to it.

I read a lot of people got flushing day one. I did not have any flushing but face itched a lot today. it was no big deal. I obsessively read posts and information on the drug before going with it. I did take an aspirin and eat prior to both doses.

[SEAMSGUY]

Hi All- I've been on Tec since early April so it's been a little over 8 months for me.

As some here have noted, taking it with food (and definitely something with some fat in it) seems to be essential to help counter any stomach/GI issues.

But I haven't really had any of the redness and/or flushing issues that many describe. I've maybe felt the flushing a dozen or so times since I started Tec and even then it was very mild.

My neuro recently told me that taking a baby aspirin (81 mg) will also help with the reactions.

Hope this helps Erica!

[hparks]

Aspirin

I noticed that the literature put out by Biogen says that the medication can be taken with or without food. That may be true, but the flushing, itching, redness, or whatever else is so much less when I eat before taking it! I'll have to try the aspirin too!

I am only on day one but anything beats the flu symptoms of interferon's and after three years on copaxone I developed an allergy to it.

I read a lot of people got flushing day one. I did not have any flushing but face itched a lot today. it was no big deal. I obsessively read posts and information on the drug before going with it. I did take an aspirin and eat prior to both doses.

[Don2480]

Low dose coated aspirin generic up brand to be exact...Seems like it prevents flushing for what others have said...I also asked my neuro when prescribed this dmd and he agreed that his other patients have found success with it. hope it helps

[erica1000]

Thanks to all

Guys,

Thank you for responding to this thread. It is good to hear the positive experiences that folks are having.

I got a letter today from my insurance company saying they have approved the drug and then within an hour got a call from the specialty pharmacy. Frankly I was surprised the approval happened so quickly since it took a couple months for Copaxone. There will be a delay because my co-pay would be over $900 so the pharmacy is going to work on getting the $10 program.

I am looking forward to getting started and have made some notes on things to use to pre-medicate. Thanks again for the contributions to the thread.