Dr ordered some blood work, asked me to continue taking it for now as these symptoms are not known to be associated with Tecfidera (the fever and body aches). Will resume tonight, still hopeful!

Sally, thanks for thinking of me! :hug:

I didn't get my meds until late on Wednesday. I had two appointments yesterday. I wanted to begin on a day when I could take my first dose mid morning so I started today.

Took my first pill at 10 AM and have felt fine since. Wasn't really expecting much of a reaction being my first dose. I hope I tolerate this med well and we'll see what the coming days are like!

I keep looking in the mirror to see if I'm flushing! :o

Wow. About 1 PM I noticed that my face felt hot. I got continually hotter and felt like I had a bad sunburn. I looked in the mirror and sure enough I was flushed. It felt swollen but didn't appear swollen.

For about five minutes I felt prickly and itchy all over. It's subsided now.....after about 15 minutes......but it was intense.

I have to take another pill tonight so at least I'll know what to expect.

No too bad. Nothing I can't tolerate. Just a strange sensation.

I took my second dose about 7:30 PM last night but I ate right before I took it. If I had a reaction I didn't feel it.

So....this morning, before I take my pill, I'm going to eat something and see if that helps.

I also took 2 Aleve before I took the Tec pill so that might have helped some.

Not sure if this will all work for me but I'm going to give it an honest try. So far so good!

Kell, are you on a low starting dose?
I've heard that the bad sides usually come, when you up your dose.:confused:
I hope not. in your case.

Second day. Took first pill about 9 AM but ate before I took it. Also took 1 Aleve at the same time.

It's 10:45 AM now and I haven't felt anything. Maybe eating with the meds is going to be a requirement for me. Mandatory eating......I think I can handle that!! ;) It was about 3 hours after the first dose yesterday that I had the intense flushing.

Yes, right now it's the low dose twice a day. I take that for a week then the double dose begins. I anticipate some side effects with that but will wait and see what happens. :)

I took mine with breakfast (tall glass of 2% milk) & a half dozen other meds, the other after dinner with a bunch of other meds. The mild flushing was nothing compared to MS. Don't be one of those that read all side effects & imagine you're having them. Get a grip, enjoy the lack of shots, feel happy cause the stuff works :)

Kelly -- Hoping that that you are able to tolerate the tecfidera and that it helps. I have been considering it.

Thanks! So far the only reaction I had was after the very first initial dose and that one I took without eating first. I've had two more doses since that first one and have eaten with those and had no flushing, itching or other side effects.

I anticipate some with the higher dosage but I'll deal with those as they come. Eddie is right......it's nothing like what we put up with with MS.

If I have them then I have them and I know they won't last forever. I'm just going to keep a positive attitude and be thankful I have the opportunity to receive these meds.

Barb, it was very easy to get started. I have a Medicare supplement with Humana and between that, Medicare and the patient assistance it has not cost me anything.

I had to have some blood tests before my Neuro cleared me to begin. There was some initial ppwk done at his office but after all that was done it was easy.

The meds were shipped to me here at home.

So far it's been good. I do anticipate some s/e with the higher dosage but will deal with those as they happen....if they happen. :)

I just passed the third week with occasional mild side effects that others have mentioned here. The thing I don't understand is why, if this drug is only for halting the progression of MS, some people talk about feeling better. Is it supposed to have other benefits besides just slowing down further damage?

Joan, I'm under the impression it's just for halting progression. I haven't really felt any different except for that first dose, when I didn't eat before taking it, and had the intense flushing reaction.

Once you started on the full dose did you notice an increase in the side effects? I'm still on the first week dosage and as long as I eat first I get no flushing or any other side effects. I'm kind of apprehensive to begin taking two pills at a time next week. :o

Filled out my application for Tec co-pay assistance Tuesday. No phone call or letter from Biogen yet (crossing fingers, praying and hoping for approval:o).

Can anybody let me know approx how long it took to hear back from drug company? I did get a fancy pill holder yesterday from Tec - perhaps this is marketing or perhaps it bodes well??

Jane, I filled out some initial ppwk at the Neuro's office. Someone called me about a week later stating that my blood work had "passed" and the financial assistance dept. would need to talk to me. They asked what my yearly income was....put me on hold for about three seconds......then came back on the line to tell me I was approved. Gave me the date I should expect my meds to be delivered and a phone number in case I had any questions after I received it.

I think alot of it has to do with your insurance company, too.

I got the fancy pill holder, too! :)

Kitty, I had some stomach pain when I started taking the higher dose, but not too bad, and occasional flushing, again, not too bad. I've even taken it on an empty stomach, which is stupid, but I did it and paid for it.:rolleyes:

I think it took about two weeks for the paperwork to go through for me too, and I also got the fancy pill holder. Tec is very sensitive to light, so you don't want to store it in any container that's clear or translucent. It doesn't have to be the one they send but it has to be airtight.

thanks for the heads up about pills and light/airtight needs - you learn something new every day, eh? Neuro's nurse said I would need to take an aspirin and eat 6ou. of fat containing food before each dose --- is this still correct?

I have a Humana Medicare Advantage PPO (no supplement, due to my age). I am "this close" to the donut hole. My neuro said Biogen had found some sort of "work around" solution for medicare patients re: patient assistance program. Hope the "work around" my neuro spoke about is doable for me.

Sounds silly, but I am a bit excited to be able to finally start fighting back at this disease's progression. It will be first my first MS med (other than stuff for symptom management) Since I could never afford the copays of 33% on Tier6/specialty drugs, I had convinced myself that I was okay with not taking a CRAB. Perhaps I just needed to tell myself that in order to stay sane ;)

Wish me luck, cross your fingers, say a prayer and perform some rain dances that I get the drug :wink:

I have the Humana prescription plan along with Medicare. I'm 53 and I'm not sure if that has anything to do with the difficulty I've had trying to get a Medicare supplement.

I got the prescription coverage easily and it really helped with getting Tec. I also got a letter from Humana telling me that they prefer Avonex :rolleyes::rolleyes: and want me to see if my Neuro will switch me. Ummmm, that's not gonna happen. I'm not doing needles again. I called the patient assistance number I was given for questions and they told me not to worry about it....I didn't have to switch.

I begin my full dose on Friday so we'll see how that goes. JoanB, I took my very first dose without eating and I will never do that again! Flushing and itching were intense! Jane, eating prior to taking Tec is a must for me. It needs to be something substantial....with some fat in it. As long as I eat first I have no side effects at all. Might be different with a full dose but we will see! I'm excited about this med! :)

If I had to guess I'd say that it would cost them less money. :icon_rolleyes:

Absolutely! They're looking out for themselves totally. ;) I'm not going back to the injectables.

Today I start the regular dosage. I'm a little apprehensive but thinking positive about it.

I need to eat something substantial but I'm just never very hungry in the mornings. Maybe a PB&J would be good.

Ya'll wish me luck! :)

9:15 AM - Took my first regular dosage pill after eating two Eggo waffles with peanut butter and honey on them. Now the waiting (for the flushing) begins.......:icon_redface:

Sorry for the play-by-play but I'm using this thread to document my side effects, or lack of, and my general tolerance of the Tecfidera.

It's now been 2 hours since I took the 240 mg dose and I've been side effect free. I just noticed that my ears felt tingly - sort of like a sunburn - but it's not too bad.

I want to take a shower but am a little apprehensive since this was my first full dose. I might just wait until later this afternoon. Feeling like I need a nap so going to lie down for a while. :)

Glad it is going well. Keep up the posts. I am definitely interested.

Well, it's been 8 hours since my dose of the 240mg Tec and I have to say I felt no different than I did taking the starter dose.

I have another pill to take about 7 PM. If I have a reaction it's generally about 3 hours after I take the medication. I've been eating right before I take it and I think that's going to be the trick for me.

Kitty- your state may be like mine and some other states. They prohibit or make practically impossible (due to significantly higher costs) for anyone under 62/65 years old to purchase a supplement. For example, in my state it is not allowed to be sold to anyone on medicare if "not of retirement age". That leaves all of us on Medicare due to disability (not age) out of luck.

Kitty- sounds great, glad you are not getting bad s/e

You're right, Jane. It allowed me to get a prescription plan (I don't have the Medicare prescription plan) but not the health insurance. Thank goodness I have Medicare for health. The rx plan covered over $2K on the Tec for me! Then they sent a letter "suggesting" Avonex because it's cheaper. Um, no thanks. I've done my time with needles. :rolleyes:

Second day with 240mg capsules. Took my AM dose about 10 AM along with a bowl of oatmeal. No reactions yet and it's been 2.5 hours. I haven't had any stomach upset yet but that might come after a few days on the full dosage. I'm sticking close to home just in case. ;)

It's about 2:10 PM right now and I'm having minor flushing. My ear and neck feel HOT! :eek: Like a sunburn. My first experience with this side effect lasted about 20 minutes. It's not painful but I can definitely tell something's going on. :)

Took the 2nd pill about 7 PM with supper. No side effects at all. Today will be day 3 on the full dose.

Day 4 on full dose.

9:15 AM took 1 pill w/breakfast.

12:15 Three hour later (when I usually have a reaction if I'm going to) and I feel slightly nauseous. Nothing bad and it might be anything....may not be med related.

But this higher dose takes my appetite away which ordinarily would be a good thing but I need to eat when taking this med. I had two waffles with peanut butter and honey on them with my first pill. I do drink a lot of water in between so that might be the culprit, too. No snacking between meals will be a good thing for me, though. :o

I noticed yesterday that my tummy was growling sort of like it does if you don't eat all day. Didn't feel bad but my tummy sure was talkative! :eek: My cat was beside me on the couch and she looked at me like "why are you making all that noise?"! :p

So far I'm liking this med.

I have been on 1 240 pill a day now for 13 days. My blood work all came back good but still having stomach cramps and diarrhea. Told them I would go back to 2 pills a day and give it another week. If things don't settle down I will be back on Avonex. I'm actually about ready to go back to injections, at least I only had 1 day a week that I didn't feel good

Day 5 on full dose. Still doing good with no apparent side effects unless I don't eat beforehand.

I started taking one 10mg Pepcid pill each morning. I had slight indigestion in the late afternoon but that could have been the pizza I ate. :o

I need to call my Neuro to find out when I need to have my blood checked again.

Hope everyone else who is trying this med is doing well. :)

I realized something today that may make a difference for me. I have not been a milk drinker for years but when I started taking Tecfidera I started drinking a lot of milk. Some of this may be lactose intolerance, so I am completely changing the foods that I have been taking my meds with. We will see!

I've had to completely give up milk and milk products. Since I've gotten older I've developed an intolerance to it.

I never have liked milk but I do like ice cream. That's been difficult for me to give up but the effects I suffer after eating it just aren't worth it.

I was told to eat something that has at least 6 grams of fat in it when you take your pill. I hope you feel better with your new dietary changes.

How are you liking the Tecfidera?

Well, today was day 9 on the full dose and everything seems too be going just fine. No side effects unless I don't eat before taking the pill.

My neuro wants to see me in May for blood workup. He was so happy that I'm tolerating it well but said that everyone he's prescribed it to has done well on it.

Onward! :)

Called the Dr today and told them that I give up! They are working on getting the Avonex restarted for me. I was unable to tolerate the side effects of Tecfidera.

I'm so sorry you're having to stop. I've heard of some folks having terrible side effects. So far I haven't had any but I'm just on my second week of the full dose.

I hope you find something you can tolerate. I can't tell if the Tec is helping me but I feel better just taking something that might do me some good.

Good thoughts and wishes for you on the Avonex. :hug:

Kell, are you still taking LDN? I talked my Doc into writing
my LDN script, since Dr S retired. Yea!!

No, Sal. I haven't taken it for a couple of years now.

No wonder you had to go on TEC...LOL:D