[Kitty]

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.

[OmaDot]

Originally Posted by 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.

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!

[Kitty]

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

[Kitty]

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. 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.

[Kitty]

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

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.

[jprinz99]

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'.

[Kitty]

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!!

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!

[SallyC]

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

[Kitty]

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.

[ewizabeth]

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.