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:
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 :-)
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!
Good luck!!!
ReplyDeleteI 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!!
ReplyDeleteSo how has it been for the past 6 wks??
ReplyDeletehavent started yet..i start in June. it'll actually arrive on 6/4
DeleteMy 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. :-)
ReplyDeleteheeheehee...hey! alcohol and meds are always a top priority for me :-)
DeleteOl me too!
DeleteLol me too!!!
DeleteHAHA!! I like your attitude!! Going to be starting tecfidera soon . On Avonex right now.
DeleteGood luck!
ReplyDeleteI 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.
ReplyDeletelol...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)
ReplyDeleteJust 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.
ReplyDelete:-) 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.
DeleteI 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'.
ReplyDeleteWell 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!
ReplyDeleteIt 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 :)
ReplyDeleteJust started Tecfidera. Been on Avonex, Copaxone, Tysabri, and Betaseron. I was so excited when this was approved.
ReplyDeleteHey 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
ReplyDeleteI 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:-)
DeleteHi 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.
ReplyDeleteI 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.
ReplyDeleteHi 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 ;)
ReplyDeleteI haven't experienced side effects but i don't like it and am hoping that i can go back on Tysabri soon.
ReplyDeleteI have been taking Tecfidera for 3 months now no side effects and is better than sticking a needle in me...
ReplyDeleteHello, 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.
ReplyDeletethanks for these comments…i really have to bring myself to eat like that…i can count out some things but...
DeleteFound 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.
ReplyDeleteI 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,
ReplyDeleteLove this site...I just started Techfidera this morning I was also wondering if I could have a glass of wine.
ReplyDeleteI 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
ReplyDeleteOk 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
ReplyDeleteSo whats moderate drinking? A couple of beers a night? Is ok to ever drink 8 or 10,once in a blue moon?
ReplyDeleteI just started Tecfidera and so far only have had side effects the first day a little burning and itching on my arms and mild flushing in the face that was it! So far I am on day 3 and I feel fine...definitely beats sticking myself and bruising my skin with the Rebif shots. Haven't had any drinks yet but that is coming tonight...I'l keep you all posted! Thanks for this blog!
ReplyDeleteI've been on Tecfidera for little over a year. No main issues, but recently I wake up feeling ill. I want to go off medicine all together and see If I can control relapses myself. When i was on Rebif I had relapses every three months and hospitalized every year for 3 years. Recently went on Medicare and my copay is $1037 a month. Because this is a specialty drug that is my cost. Contacted a copay assistance program and I will pay $20 and they will pick up the rest. I appreciate their help but I will only be able to continue for 5 months. Why is this medicine not affordable like that for diabetic people.
ReplyDeleteI have been on Tecfidera for one year. I have noticed over the past few months that I can not have any alcohol without waking up with a migrane. I have to stay in a dark room and 800 mg of advil does not "touch" it. This happens when I have 1 or 2 beers. (bummer). Does anyone else have this happen?
ReplyDeleteI was just diagnosed in Dec 2014. This came as a shock. All summer I was riding my bicycle about 100 miles a week, a fixie at that. Then BOOM! beginning of Oct I got the burning and tingling down the left side of my body. I want a drug that is going to let me be physically active. I have started Tegretol and that is all. The doctor will start me on a drug next week after they test me for JC. Just glad I found this blog! It makes me laugh and hopeful! Will let you know what drug I will be given. Fingers crossed it works and I can afford!
ReplyDeleteHey Leanne...I've just read your post. I was exactly the same, always been active played football and hockey, studied sport at uni then like you said BOOM- tingling and cold patches on the left side of my body, double vision, dragging my leg, lack of balance u name it lol I was diagnosed in July 2014 and only recently been given the tecfedra.. I have been apprehensive taking it but I'm starting it on Monday..so will let u no how I get on :-) I'm sure we will be in the Olympics by next year lol x
ReplyDeleteI was diagnosed 2/15, Tecfidera is my first DMT, I've been on it for 4 months now with minimal side effects, flushing about an hour after I take it but not every time, guessing it has to do with how big a meal I had. Thankfully no gastrointestinal side effects at all. My big problem is hair loss which started 3 weeks after I began the Tecfidera and has not let up. My hair seems finer than before also. I had one neurologist tell me to give it 6 months to see if the hair loss stops but another neurologist suggested I switch to either Rebif or Copaxone sooner rather than later. I am a bit concerned about switching to Rebif as I do enjoy a glass or two of wine most evenings whereas I don't see any alcohol warnings for Copaxone.. Has anyone else experienced hair loss with Tecfidera?
ReplyDeleteHi everyone,
ReplyDeleteFirst, I like the blog. Everyone I putting there two cents in.
I am 36 and I was diagnosed in March of 2015. Right from the start I was given Tecfidera. In the beginning I only had a little flushing of the face, but after a week or so that stopped. Although, and this is a big although, I developed a high allergy to the Tecfidera. Benadryl worked great, but you will fall a sleep instantly. Claritin curbed the allergic reaction only a little. Allegra seems to work great. So I take one 180mg of Allegra every morning with the Tec. Although I do have the GI issue and I am not sure if it is from the Tec or the MS. I haven't experienced the hair loss...since I lost that years ago.
Hi everyone, glad I found this blog. I was diagnosed with CIS, clincally isolated syndrome of ms. Has any one else. I took my first pill tonight of tec & hoping it doesn't give me any side effects. We will see. I do like to have my drinks after working as well. Maybe one or two. I'm hoping it doesn't really effect it. I also smoke, so again wondering how it does with that also. I know I have to become active again, hearing this news back in September being tested for stuff since June has made me a bit crazy..they found lesions on my brain and spine.. Thanks everyone for reading & good luck
ReplyDelete