LDN wasn't doing anything for me anymore. It seemed a waste to keep buying it if I had no improvements. It worked for a while but I guess I just built up an immunity to it? I don't know.....but I need to be taking something. Tec seems to be something I can tolerate so I'll take it till I can't!

I started with symptoms 3 days into the full dose. The diarrhea and cramping became intolerable. I was on Avonex previously and tolerated it well so I will resume that. Just have to get my body back to normal. I took my last dose of tec on Saturday and still have sx. Sounds like it is going well for you, I am so happy for you!

I have to have blood work again in May and see the Neuro to bring him up to speed on my progress with the Tecfidera.

So far so good with it. This Friday will mark the two week point on the full dose.

I hope I keep tolerating it well. I really can't tell any difference in my MS while on this med but when I was on the Interferons I couldn't really tell if they were helping or not. Hopefully my next MRI will show that there is not any progression.

Exciting news for me- MS Active Access put me in touch with Patient Assistance Network Foundation. I was approved by PAN for 5K on initial grant and 5K on a "2nd grant option". Coordinated with my specialty pharmacy and neuro for approval/authorization. My medication is scheduled to arrive today:)

MS Active Access said to contact the when I get 1-2 months worth of funding left so they can try and hook me up with additional aid. The 10K should last cover about 4.5 months of copays. This will be my first MS medication. The process was surprisingly pretty quick and easy.

For some strange reason I feel like doing the happy dance :D

So happy for you!! :) I hope you do well on the meds. So far I'm doing wonderfully!

day 3 on starter dose - so far all is good!

That's great, Jane! I'm into my 3rd week on Tec and all has been good so far. No bad side effects.....just a little tingling at times a couple of hours after I take it but even that is slowly stopping.

It's so nice to take something and not feel horrible afterwards. :)

Well, I have enough pills to last me through Monday. I called Right Source (the pharmacy that filled the first month) and they said my Neuro has to request the maintenance refills.

Just got a call from Humana and was told they denied the request from my Neuro for a maintenance dose prescription. :confused::confused::confused:

I just called and left a message with his nurse that the denial letter was faxed to them yesterday and the appeal process is explained in that letter.

I guess they will have to respond to Humana asking that the prescription be honored. I'm not sure if MS Active Source will have the financial assistance I need for me to continue on this med.

I hope so because I was tolerating it so well. I'll just continue taking what I have and hoping they get this worked out so I can continue it.

Double-bummer, Kitty. The short notice on the denial and the concern about financial assistance. I hope someone works magic by Monday.

ANN

Hello all,

I've been taking it for a little over a month now. I've tolerated this MS med better than all the shots and pill type tried. I eat eggs for protien before taking my morning dose and an antinausea before the PM dose. I had blood work and everything seems routine so we are good there. I didn't want to waste my $ and have no or worse results but I'd say, "So far so good" on Techfidera!

I've tolerated this med better than any other I've tried so I hope the powers that be see fit to let me continue with it.

It's all because of the $$ that the insurance company doesn't want to pay. :mad: Well, I can play that game, too. Maybe I'll just not pay my premium next month because it sure seems like I'm paying for NO coverage.

Insurance Companies all suck. How can the do that, after
they've already approved it? That seems crooked to me.

I'm hoping the Neuro's office calls me back today with some good news.

Good luck Kelly. Every six months my insurance denies me coverage for a med that I have been taking for almost 7 years. Then the doctor has to send an appeal and they approve it. It is really annoying because I have to remind the doctor of the process every time.

Hope you get approval to continue with the drug.

Yesterady got my first "flushing s/e" Whoo boy that was fun- NOT. It was described to me as a mild redness and heat sensation "...much like a mild sunburn"

HaHa I got prickly/tingles at first & then got really hot. Felt like I had actually burned my face and neck. Skin turned lobster red, like I had fallen asleep on the beach. I used cold wet towel and just sucked it up. {well truth be told we joked about it and I whined a bit} :wink:

Got it again later in the evening. Tummy pains off & on but not bad; sort of like a GI bug can give you pains. The plus side is it's hep the C problems;)

All in all, it's still not too bad a trade off.

I was on techfidera for one year and it severely lowered my WBC (gave me leukopenia). Also had nasty flushing every single time I took it and a very runny nose.

This stuff was too toxic for my taste! I had a huge concern I would end up with CANCER since there is definite cancer risk. Anyone who saw my bloodwork results would clearly see why. A LOT of my body's natural defenses protecting me from getting cancer was compromised!!

I stopped tecfidera very recently and can only HOPE my WBC goes back to NORMAL. The fine print on this drug says it will NOT return to normal baseline. This does NOT sit well with me and I regret ever going on it. Wish I had tried LDN first.

I am now switching to LDN.

Hope you do well on LDN Lilly, thanks for giving a clear picture of how it affected your body.

Still waiting for my Neuro's office to call me back. They called this morning to verify what kind of insurance I had and said they would be calling them today and then call me back to let me know the verdict. I hate waiting for someone else to decide what to do about my future......:mad:

Well, I contacted MSActive Source, Right Source Pharmacy and my Neuro's office.

I was on the phone for 86 minutes (per my phone timer) yesterday afternoon and spoke to approximately seven different people. After all that phone time I was exhausted and more confused than before I started!

I'm not going to call anyone else. They can sort this all out and, if they want to help me stay on this medicine, they can let me know when to expect the next shipment. I. Am. Done.

You poor thing.:( That stinks!!
Let hope they straighten it out for your benefit.

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. :rolleyes::rolleyes::rolleyes:

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?? :)

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. ;)

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. :)

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 :o

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. :)

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.:)

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.

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.

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 :D:D

I'm glad you're tolerating it fairly well, Jane.

I always eat something before I take my pill. That one time when I took it on an empty stomach was enough to make me remember to eat!!

I don't get any of the stomach upset, cramps or D. I might get a little bit of the tingly feeling but not every time.

I think the longer we take it the less side effects we'll have.

I am so thankful for the patient assistance programs that are allowing me to take this med. There's no way I could ever afford it by myself.

My insurance company actually has TEC as a preferred drug and Avonex is not. My Avonex costs me more than the TEC did! Too bad my body said NO!

I wonder what the insurance company's protocol is for accepting or denying an MS medication. Tecfidera is close to $5K a month.

I have an appt. with the Neuro next week but I'm going to have to postpone it. I need to get a blood test a few days before I go so he can make sure I'm tolerating the Tecfidera. Not driving sure does put a kink in my ability to get things done. :mad: My DIL is my ride and she has not been feeling very well lately.....but she is pregnant with twins so she has a good excuse!

It's been smooth sailing with the Tec for me. The only s/e I have is very mild flushing and tingling but not every time.

I'll post my blood test results and my Neuro visit results when I get them. Probably will go the week of the 19th.

:)

Wow, it's been a while since I've posted on this thread. :o

I no longer get the flushing reaction when I take Tec. I really haven't seen any positive results from taking it but I'm not sure that you're supposed to. As long as it's keeping me from progressing then I'm happy.

This summer heat is really bad this year. My legs feel super heavy and it zaps all my energy. Just thankful for the A/C. ;)

I'm doing fine on tech now (first few 2-3 months s/e were not exactly fun). I get occasional flushing and burning *what stupid euphamism for what it feels like! For me it is an onset of really hot and burning (from upper chest to top of head) Doesn't last too long and cool cloth or even splashing water on me helps. Gut pains now and again, but not terrible. All in all not a bad trade off for me over doing nothing to slow this monster down.

Seem a bit more fatigued, but that could also be due to MS & the heat. C'est la vie

Tec (as I was told by neuros and Biogen) is not really designed to make us better, but too decrease progression of increasing disability and frequency of flares, as well as, decrease the overall MS disease progression. Sort of like 'we think it helps, but can't really prove it since you all progress differently'.

I got my blood tested last week. Seems my liver enzymes and white blood count are fine and I'm tolerating Tec well.

I hardly ever get any side effects from it (flushing, GI upsets) anymore. Yea!! :D

It's become easier since I've got my mail order pharmacy on the same page and now I get all my meds through the mail. I just got a three month supply of Tec yesterday! I didn't know they would do that but I'm okay with it!

Like Jane said, Tec isn't designed to make us feel better when on it (but if you do that's just a bonus!) but to slow or stop progression of disability of MS. When I go for an MRI next year I'll get to see the proof of that! :)

(((((Kelly))))), I hope that TEC keeps on doing the good thing for you
and maybe even makes you feel better, in the future..:hug:

Olive Leaf Extract
 

Okay, I wanted to share this with you all. I am taking a new supplement called Olive Leaf Extract. Here are some links so you can become familiar with it:

http://drhoffman.com/article/olive-leaf-extract-2/

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3596374/

This link explains the Herx reaction, which is a die off of the infectious organisms: http://trustinfood.org/olive-leaf-extract-side-effects

It's doing some good things for me and I can definitely feel a (good) difference in the way I feel. :)

My doctor suggesting me to start this I think
 

My new local neuro has mentioned starting a pill (this I assume) the last two times I saw him since my symptoms have been getting a bit worse.

When I was on Tysabri I had a slightly low wbc at times. My MRIs are usually good so I wonder if I am nearing SPMS. I have never showed many spots on my films.

So I wonder how the WBC issue compares to Tysabri? I guess I'll have to talk to him when he gets back from vacation. I really want to keep working for at least ten years, and hopefully have a good quality of life after that too!

I stopped my simvistatin that may have caused some of my leg pains I was having. I just wish I could get off most of these meds, I know if I quit working I could get off of at least five of them. Stupid frigging old age and MS. :rolleyes: