Tuesday, April 9

Tecfidera

BG12 is now referred to as Tecfidera.  As i mentioned before, i go for my "juicing up" on Friday and even though i won't see my doctor, i'll either see A doctor or a nurse practitioner so i'm definitely going to get as much info as i can from them and if possible start the ball rolling.  a complete blood count must be done prior to starting, so i'll suggest to whomever i talk to that they might as well order it.

My findings:

  • there's no waiting period after stopping the last therapy before starting it...that's good.  that way i can start it sooner rather than later because the Tysabri won't have to be out of my system
  • there is a $10 copay program.  the site states that there is no income requirement, no time limit and no waiting (enrollment can happen as soon as you go on it); this is good news...hopefully alot of people can take advantage of this
  • moderate level of alcohol has no effect on it or it's workings.  WOOHOO!! it's no secret that i enjoy beverages of the alcoholic kind :-)  the day that i am told that i can no longer drink is the day that this shit will become unbearable.  the question of how the drug will interact with the alcohol is MOST important - i don't care, it is what it is
it appears that the most serious side effect of it is that it could cause a decrease in the white blood cell count (nothing in life is free) and the most common effects are flushing, itching, redness, rash and nausea, vomiting, diarrhea stomach pain or indigestion - goody!  these also may decrease over time...but i'll take those over a fatal brain infection any day...I'll be adding a little blue pill to my pill box regimen :-)


so...more to come.  wish me luck on friday!

33 comments:

  1. I am going to look into that copay program. I haven't been on any sort of DMD for about a year now. I'm so excited they finally have approved and are ready to prescribe! Yay!!

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  2. So how has it been for the past 6 wks??

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    1. havent started yet..i start in June. it'll actually arrive on 6/4

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  3. My neurologist just suggested Tecfidera to me as well... I haven't started it yet but too am curious about effects. I was on Tysabri, but tested pos for the jc antibodies. I'm African American male. I found this search looking for alcohol effects. :-)

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    1. heeheehee...hey! alcohol and meds are always a top priority for me :-)

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    2. Ol me too!

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    3. Lol me too!!!

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    4. HAHA!! I like your attitude!! Going to be starting tecfidera soon . On Avonex right now.

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  4. I also found your blog during the alcohol interaction search - cocktails on the deck are a must :o) so, now that it is late June, curious as to how you are doing with the side affects. I've been on Copaxone for 10+ yrs and it decided to stop working a couple months ago. I have the wrong heart rythem for Gilenya, so I should start Tecfidera in a couple weeks. Hope all is well.

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  5. lol...yes alcohol is a must - i don't care what anyone says. i will publish an update soon, but so far so good. i haven't had any problems wrt side effects and i can't complain about it at all...when u say "it stopped working"...what happened? (if u don't mind my asking - feel free to email me the answer)

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  6. Just came across your blog wondering to if I can still have a beer or wine anything lol.I am trying to find out also if I can still use Medical Marijuana my pain is unbearable most days but I smoke and I seem to forget about the pain.And it helps with the nausea as well and helps me walk a little better.I am only 32 and if I have to stop, that will really be some BS.I start Monday waaahhhh.

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    1. :-) i hear u...i hope you can continue using since i've heard it does wonders for the pain. i called the number on the Tecfidera site to ask my questions and got lucky because they were able to answer them all. you should do the same and with any luck you'll get all answered as well.

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  7. I just came across your blog as I started Tecfidera on Sunday and was looking for anything that might have an expanded listing of side effects outside the 'common' side effects. I have to say that I literally burst out laughing at your comment....."the day that i am told that i can no longer drink is the day that this shit will become unbearable." I'm totally with you, which is why I have been taking Copaxone since diagnosis. I decided to jump on the Tecfidera bandwagon when I discovered that you can indulge in a moderate amount of alcohol. Of course, I was told to initially take it with aspirin if I experienced any flushing/itching, etc. So far, just a minor amount of flushing, nothing that would warrant asprin. Although, I do feel horribly TIRED/fatigued today, more so than usual. I kind of feel run down, tired, a bit achy at times. I am trying to determine if I am fighting something, or if it is one of the 'uncommon side effects'.

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  8. Well for me, I'm not getting side effects from "it" and a beer, that's nice ^ ^ 26 here, and I'm not so great, but the pills started working right out of the gate! I dig your site, and I dig pills more than shots... Beer as well, but I digress :P God send is what this is, not getting any side effects from it so far, but its only been a week and half. M.S. Hurts, the way it make me feel, and the way I get looked at like I'm just lazy for what it does. Good to find a site with others like me!

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  9. It works without side effects when drinking a beer, so I like that ^ ^ So far I'm really digging your site too. 26, and it was really starting to hurt, and make me fall, and get looked at in public all too often. Glad to find a site with people who feel like me. Maybe not the right place to post to, but I was afraid of this pill, though it sure beats getting shots... Hold the line :)

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  10. Just started Tecfidera. Been on Avonex, Copaxone, Tysabri, and Betaseron. I was so excited when this was approved.

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  11. Hey guys... Just started tecfidera two days ago... doc had me start with just one of the starter pills(120mg) a day for first two days... Its day three and I took my second daily pill already and so far I had flushing (red hot itchy) the first two days and today.... Nothing! I had no side effects at all today! So excited since the avonex I was on was horrible with the side effects and they never went away for 8 years! Wish you all well I'll check back in once I start the full dosage

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    1. I know I'm late at responding but I just started the medication. I was reluctant to take it because I was taking Gilenya before third and it didn't leave me with good side effects. I want sure how to take the aspirin so I would take it every time I took the pill. After taking the second dose of the first pill, my chest began to hurt so I started taking the aspirin every time I take the pill. It is working because I had numbness in my feet that went away. I'm glad to know that you folks aren't having any bad effects with the drinking moderately because I have been wanting a drink so I will try my luck. Thank you:-)

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  12. Hi Guys, I've been on Tecfidera now for three weeks and have been vomiting now for a week and a half and lost ten pounds. Maybe I should go back to drinking a few beers to put weight back on. Any ideas to doctors don't.

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  13. I love this blog! I've been on Tec since August. I had the upset stomach and flushing, itching like crazy for the first 2 weeks. I almost quit. I'm glad i didn't because most of the side effects subsided. I still flush about an hour after I take it but it's bearable. I need my cocktails at night! If we've been dealt with this terrible condition, please Lord let me continue to have my nightly cocktails. Best to everyone with MS.

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  14. Hi everybody, I too came accross this blog searching the "Can I drink with Tecfidera" I have only been on Tec for 6 weeks & all I can say is thank god no more Injections, I had the usual side effects Flushing itching for the first 3 weeks and now nothing, I was hoping for the vomiting to lose a few kilo's, but unfortunately not looks like I will have to slug it out the old fashion way with diet & exercise ;)

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  15. I haven't experienced side effects but i don't like it and am hoping that i can go back on Tysabri soon.

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  16. I have been taking Tecfidera for 3 months now no side effects and is better than sticking a needle in me...

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  17. Hello, I'm new here to this blog, but I was reading through the comments and thought I'd say some things. I was diagnosed with MS back in August 2009 and have only been on medicine for 6 moths over the past five years. I've had a few flare ups but they went away. I can't walk as well as I once could, but I can walk well enough to get things done. When I was on Avonex for those 6 months I can honestly say I was in hell. In no way did I notice any benefits from it. I notice I feel the best when I stay low stressed, sleep well, and eat right. Eating right means no red meat, pork, processed foods, beans, and heavy tomato consumption, so basically eat lean organic meats and organic veggies. Also stay away from GMO foods. Take Krill oil as well, preferably 1gram or more a day. Make sure you're taking at least 2000 IU of vitamin D everyday. I'm not suggesting these things are a cure but it's more than helpful. I too have received Tecfidera, and it's sitting on my kitchen counter. I received my bottle back in September and haven't even opened it. I plan on trying it sometime in the near future, but I just hope its effectiveness tops Avonex, or I will throw it in the trash. I enjoy my beer as some of the others on this blog do. One of the main things with MS is don't fold to it. Say daily it has no dominion over your body and wish it away. The power of the mind is crucial in a person's fight with MS.

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    1. thanks for these comments…i really have to bring myself to eat like that…i can count out some things but...

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  18. Found this site last week, while searching for common side effects. I will start Tecfidera next month sometime. Originally diagnosed in spring of 1999, I have been on most treatment regiments. Began with Avonex and it was a miserable experience. 2 plus years of flu like symptoms 3-4 days a week. Short stint on Beta, with similar results. Health continued to decline. Then a shot with Copaxone. During the next 8+ years, my symptoms ceased and I was able to begin running again. Completing 9 marathons and as many 1/2 marathons. Life was good and in control. Copaxone and a healthy diet was working. Then I suddenly developed an alergy to the med and had to stop. In short order, the spasticity and numbness returned. Have been on Gilenya for the last 18 months with multiple exacerbations. Although I am not expecting any miracles or future marathons, I am optimistic that "Tec" will be effective with the minimal side effects that you guys have talked about. I appreciate the info. And yes....a beer or cocktail a couple times a week, doesn't hurt either.

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  19. I just get a positive Diagnose after MRI and Spinal Tap, so I am the new guy on the Blog, Neuro recommend Tecfidera or Copaxone? I do not know what to do , but after reading this blog I think I am going to try Tecfidera , all depend on my Insurance , I have Humana One, do not know yet if is going to cover this Drug,,,,I also love to have my beer in the afternoon,

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  20. Love this site...I just started Techfidera this morning I was also wondering if I could have a glass of wine.

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  21. I just started Techfidera this morning. I love this site I've been Reading all of the comments I'm glad I'm not the only one that wants to have a glass of wine so I decided to break down and have one anyway hope it's okay

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  22. Ok so what is moderate drinking,that can vary greatly .a couple of brews a night? Maybe 8 every once in a while? I just started walking again been in a wheel chair for 6 months,cant walk that good or that long( yes with out drinking) but so tired of taking shots,rebif,so going to start tecfidera ,hope it helps

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  23. So whats moderate drinking? A couple of beers a night? Is ok to ever drink 8 or 10,once in a blue moon?

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