[Kitty]

Thanks, Sally. I'm just going to wait and see who calls me next.

These pharmaceutical companies charge such ridiculous amounts for these medications. The invoice I got showed that my insurance (Humana) paid $2792.66 and Patient Access Network paid $2283.18 for a whopping total of $5075.84 for a 30 day supply of Tecfidera! smh

Oh, and I got a letter "suggesting" Avonex.

[Kitty]

Yea!! I just got a call from Active Access about financial assistance for
Tecfidera.

She enrolled me in their free drug program since my insurance doesn't cover the medication.

I need to call my Neuro's office to alert them that they will need to send a prescription to the new pharmacy. Active Access will call them, too, but she said sometimes it helps speed up the process if the patient calls, too.

Hoping I'll have a new prescription by next Monday! I'm so thankful for these assistance programs. Who on earth can afford $5,000 a month for anything??

[Kitty]

My Neuro's office called to let me know that they had been contacted by Active Access. They're sending the prescription over so my medication can be filled. I got approval for refills through December!! They'll have to look at my financial circumstances at that time to see if I qualify for another year. Unless I win the lottery or marry the millionaire that's supposed to be out there looking for me I feel like I'll probably qualify.

[Kitty]

Got my Tecfidera today! The prescription lasts through December of this year. I'll get financially reevaluated and then get another prescription for the year 2015.

It feels good to know that the cost is covered for the rest of the year.

[jprinz99]

have been dealing with stomach pain last several days. This is not what I expected but I will suck it up and try to wait it out the approx 1-3 months to see if it lessens. I am eating each time and already take a proton pump inhibitor - those were the only suggestions from nurse, other than 'call you doctor'.

Anybody else feel extra tired on this? I just want to nap most of day. I don't recall seeing anybody complain of this, but my memory can't be trusted

[Kitty]

Jane, I haven't had the tummy troubles some have reported. My most prevalent side effect is slight flushing and tingling a couple of hours after my dose. Sometimes I don't even get that. I have noticed a slight tummy ache a couple of times but that could really be from anything.

I just got approved to be on the Active Access program and they will ship my meds for free. That was such a relief because I just can't pay $5K a month for anything!

I hope your side effects subside. I was told they would eventually be unnoticeable once you've been on med consistently for a couple of months.

Good luck to you! I hope we can both tolerate this med.

[My3sons]

jprinz99, I haven't felt extra tired on Tec, except for just the past few weeks. I've been on it since Aug. 2013. I think lately the tiredness is that my back has been hurting more and walking is a struggle again. I've never really had much of the fatigue thing going on but the past week I'm about falling asleep around 2:00--not good because I'm still working till 3:10. Tonight I can barley keep my eyes open. I still am having trouble trying to figure out what is MS or normal or something else.

The one problem I have on Tec is a low WBC, which is expected. I'm seeing a Hematologist just to be sure it's nothing else but everything is pointing to the drug. My count went up this month and it is not so low that they are worried about it, so I'll see what next months blood work shows.

I still get the flushing once in a while but it is about 2-3 hours after taking it and usually only in the morning. If it is at night, I've noticed it is if I have an alcoholic drink of any kind. It only lasts maybe 15-20 minutes then it goes away.

I've had off and on stomach cramping, diarrhea but it is only in the morning and it is not consistent--could be something else-who knows.

Hope everything goes well for you. I really like the pill and I hope it works out for you.

[EddieF]

I never had tired feelings from Tec but I took/take 2000mcg's of B12 & 200mg of caffeine every morning. B100 after lunch.

Ditto on the warmness when I had nightly drink which was welcome during winter.

[Kitty]

Has anyone ever had dry mouth as a side effect from Tec?

I think it may be caused by one of the other meds I take. I looked on the Tec website and didn't see it as a common s/e.

When I wake up it's like I have a mouthful of cotton. Hard to swallow, too.

Otherwise, the Tec is going great and I've been on a full dose twice daily. Have to eat a little something before or right after I take it but other than that I don't have any problem with it.

[jprinz99]

Thanks all! I think I have it figured out (at least for me & for now):

if I eat a decent meal approx 30-60 minutes before I take a capsule I only have occasional cramps. Bad pain and watery D is relieved simply by eating a more substantial meal before the caps.

The flushing is not too often and when it hits it only last 20-30 minutes- so no biggie for me.

Tiredness is still there, but getting better. It may have been related to the gut drama - sort of felt worn out because I wasn't keeping anything for long & had gotten dehydrated.

Part way into month 2 for Tec and I see the light LOL