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-   -   Tecidera/BG-12 - Day One (http://www.msworld.org/forum/showthread.php?t=126985)

Sunbeam91500 05-12-2013 08:33 AM

Tecidera/BG-12 - Day One
 
[COLOR="Blue"][FONT="Comic Sans MS"][SIZE="4"][SIZE="5"][SIZE="5"]Good Morning All, and Happy Mother's Day to those who are, to those that aren't, we are just as important - this is a brilliant article putting a better perspective on this day!

But enough of the day and onto the post at hand - my Day One, today, on Tecfidera!

Firstly, a huge shout out of thanks to all the people who underwent the trials for BG-12 over the past several years, so that people like me are able to have filled a prescription for Tecfidera, the name of the medication. I am so thankful to all of you, that after nine years of injections I now have the option of taking two pills a day!

I wanted to post my experience for anyone switching to Tecfidera as I took my first pill at 6:45am, went back to sleep, and woke at 8:15am with seriously itching toes on both feet! By then I also had stinging/sunburning patches flickering on and off under my eyes, the bridge of my nose where glasses would sit, and patchy spots on my knees, legs and arms.

It is now three and a half hours since I took the pill, the itchiness has gone, and I just have a mild sunburn feeling on those spots on my face.

I have not taken aspirin or Benadryl as I want to see how long the side effects last, or become too bad not to just live through, and in my experience, again, only with pill one, day one (half dose), I'm ready to get up, get cleaned up and go and take my Mum out for Mother's Day at noon time!

Best of luck to everyone switching to Tecfidera, and again, SO many thanks to all the trial participants who got us to this point!

Out with the needles, in with the pills!!:heart:[/SIZE][/SIZE][/SIZE][/FONT][/COLOR]

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tracibk 05-12-2013 10:59 AM

hi! When I took my first pill I got a full sunburn body rash that lasted for about two hours. And (knock on wood) it never happened again! I am only on day 9. I Had a couple of other things.....itchy arms but no rash.......I do get the runny nose but very little. Best of luck to you!

Sunbeam91500 05-12-2013 07:31 PM

[COLOR="Blue"][FONT="Comic Sans MS"][SIZE="4"][/SIZE][/FONT][/COLOR]Thanks for the "luck!"

I took Pill #2 two and a half hours ago and have very little to report. It took about 45 minutes before I felt slight sunburn in the same places as this AM, on the bridge of my nose and under my eyes, but, no itching on my feet or anywhere else - so, that must have been IT for any side fx from the second pill!

So far, so good! I am not complaining about taking pills instead of doing needles!!!! Good luck to you also, I'll be checking in!;)

MS TOO 05-12-2013 08:58 PM

Thanks for posting how you are doing with Tecfidera. I have had my blood work done and stopped taking Copaxone, I don't miss the daily injections. I see my Neuro next week and will likely start on May 21 after my app't. I wanted to say I like your screen name as it makes me feel a little nostalgic. My first car was a 1967 Sunbeam Alpine. A neat little convertible that was perfectic to have growing up in California. The good ol' days, before MS.

Donna Rivera 05-13-2013 07:58 AM

I have been renamed "the beacon" at work. I flush so red that they swear they can use me to get through a pitch blac room. But I thank God that's the only issue (so far). I am on Day Two.:lightbulb:

Sunbeam91500 05-13-2013 12:31 PM

Day One - Pill #2 & Day Two - Pill #3
 
[FONT="Comic Sans MS"][COLOR="Blue"][SIZE="4"][/SIZE][/COLOR][/FONT]

[B][U]Day One Ė Pill 2 Ė 6:55pm[/U][/B]

My face started to feel slightly burned about 45 mins after taking the med, again, over the bridge of my nose and under my eyes, as well as in patchy spots around my temples.

About an hour after taking the pill I could feel the tops of my toes, moreso left foot, but they were beginning to itch. Some burning patches on face, no more itching of feet 2.5 hours after pill, so I guess, unless something happens in the next half an hour or so, thatís the extent of it for Day One, Pill 2.


[B][U]Day Two Ė Pill 1 Ė 6:45am[/U][/B]

Taken again w/o food (you can take with or w/o) as itís too early for me as Iím going back to bed to have a cup of tea, and I want to get the side effects over early as I have an interview at 10:30am.

I had a little itching again over the tops of the toes on both feet, and a slight burning feeling over the bridge of my nose, but that was about it. I did have a bit of a stabbing pain in the left side of my upper stomach about three hours after taking the pill, but it went away and donít know really if itís connected to the pill or not. Whatever, itís gone away, no big deal!!

[B][U]MS TOO[/U][/B] - I used to be just Sunbeam on here years ago, when I was first diagnosed, but then I'd learned what I needed to and moved on, but I just came back b/c of the Tecfidera to see what was going on! My name is a combination of my two gorgeous (nearly 13 years old) kitties Moonbeam, our beautiful black and white tuxedo girl, and Sunshine, our rather overweight ginger tiger!!!

[B][U]Donna[/U][/B] - Do your side fx last all day??? You and I are on the same schedule - you started yesterday, Mother's Day, didn't you?

Seasha 05-13-2013 12:37 PM

[QUOTE=Sunbeam91500;1411603] My name is a combination of my two gorgeous (nearly 13 years old) kitties Moonbeam, our beautiful black and white tuxedo girl, and Sunshine, our rather overweight ginger tiger!!![/QUOTE]

Hey Sunbeam - sounds much better than Moonshine :D - sorry, couldn't pass this up! It's great you are doing well on Tecfidera - hope it keeps up :thumbs_up:

penny70 05-13-2013 03:24 PM

[QUOTE=Seasha;1411604]Hey Sunbeam - sounds much better than Moonshine :D - sorry, couldn't pass this up! It's great you are doing well on Tecfidera - hope it keeps up :thumbs_up:[/QUOTE]

I'm not sure on that....Moonshine sounds as if to would work too. Canning jar glass optional, lol.

Sunbeam91500 05-13-2013 06:22 PM

Confession
 
[FONT="Comic Sans MS"][COLOR="Blue"][SIZE="4"][/SIZE][/COLOR][/FONT] [FONT="Comic Sans MS"][COLOR="Blue"][SIZE="4"]Um, I do have the name Moonshine...... it's the name of the little (beautiful!) Boston Whaler we bought a few years ago, and it's all my responsibility!!! It never entered my head about the clear liquid in the glass jars, we don't get it around here!!

But then there was the program on TV, Moonshiners, that was fascinating and funny, and so for my birthday my husband bought me a jar of TAXABLE Moonshine!! That was in January, I've had two sips!! Need to find something to cut it with I think................!!

Anyway, on with tonight's update on ........!!

[B][U]Day Two Ė Pill 2 Ė taken @ 6:55pm[/U][/B]

Forehead, neck, bridge of nose and under eyes started feeling sunburned and stinging half an hour after taking pill. I took it just before I ate, and had very little for lunch, so possibly the reason Iím having more side fx this evening. Patches on neck and under chin were slightly red when I looked in the mirror. The stinging is more right now than it has been since I started the pills yesterday morning. I had already put a flannel in the freezer to put on the burning spots in case I had them and Iím ready to use that now!

Sides of feet and arches are burning, top of thigh Ė itís creeping all over the place as Iím typingÖ.. must get that flannel!.....

Well, that was the strongest reaction Iíve had so far!! Itching on sides of feet, so I put ice packs on them which really helped, and the frozen flannel on my face helped too! All lasted just about half an hour before slowly subsiding, just about an hour after Iíd taken the pill. It wasnít a big deal, especially as Iím just sitting watching TV, but Iím glad that didnít happen in the middle of an interview!!! At least I know what my time frame is to get the side fx over and done with!

Please let me know if I'm putting out TMI!! It's just that I'm keeping my own journal so am copying and pasting it here, hoping it will help someone else! :rolleyes:[/SIZE][/COLOR][/FONT]

Doria Ray 05-13-2013 07:55 PM

Starting second month on Tecfidera.
 
Has anyone else made it this far? If so, does the nausea lessen?

Sunbeam91500 05-14-2013 01:30 PM

Congratulations!
 
[QUOTE=Doria Ray;1411662]Has anyone else made it this far? If so, does the nausea lessen?[/QUOTE]

Congrats on making it so far!! :thumbs_up:

I'm only on Day 3, so I can't help you, but it's good to see that someone is on it still after SIXTY days!!

Good luck - I hope the nausea goes away. Did you have it from Day 1?

Sunbeam91500 05-14-2013 01:40 PM

Different day, different side effects!
 
[FONT="Comic Sans MS"][COLOR="Blue"][SIZE="4"][/SIZE][/COLOR][/FONT][B][U]Day 3 Ė Pill 1 Ė 6:45am[/U][/B]

I had half a dozen spoonfuls of yogurt and fresh strawberries before I took my pill this morning, and I had no side fx during the time frame I was expecting them Ė during the first hour and finishing about an hour and a half or so.

Well, different day, different side fx!

About two hours after taking the pill my face started to burn Ė my forehead and chin reddened a bit (but I have a tiny sun tan, so not that noticeable!), but the big surprise was at about 2.5 hours later when I pulled up my cardigan sleeves and both forearms were covered with a rash and speckles!! It looked like I had the measles!!! LOL!! It didnít really itch that much, but was quite a surprise to see! If I hadnít been on my way to a docís appt with my Mum, I would have stripped off to see what else on my body was covered with the rash!!! LOL!! It lasted about half an hour. Weíll wait and see what tonight brings!

Doria Ray 05-14-2013 06:46 PM

[QUOTE=Sunbeam91500;1411741]Congrats on making it so far!! :thumbs_up:

I'm only on Day 3, so I can't help you, but it's good to see that someone is on it still after SIXTY days!!

Good luck - I hope the nausea goes away. Did you have it from Day 1?[/QUOTE]

Nausea started when I went to full dose, week 2.
No change thus far.


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