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Tecfidera For discussions regarding Tecfidera (also known as BG-12)

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  #1  
Old 06-20-2013, 07:27 AM
penny70 penny70 is offline
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Thumbs up A Good Thread

We all seem to post the bad thongs that our meds are doing too us & that is a good thing as we can share & learn. We all have days where it is great to share w/others who are or have been there.

However many don't share the good, which can be a big help to those "considering" a med. Here's a place we can do that. I'll start:

I have learned that Tec is working although prior to Mon I could not have proved it. See thread "Good News learned Hard Way" (or something real similar).

I have had very little issues with Tec. A little flushing but nothing I can't handle. A little red, some itching but not much else. GI problems have not been an issue. Actually has helped w/constipation some. I'd call this one a YEAH!

Overall I'm glad I switched from Avonex. Been dealing w/MS for 6 yrs now & took my shot weekly, faithfully but do NOT miss it.

Good Luck to my MS sisters & brothers!

Penny
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  #2  
Old 06-20-2013, 08:09 PM
MSer MSer is offline
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Quote:
Originally Posted by penny70 View Post
We all seem to post the bad thongs that our meds are doing too us & that is a good thing as we can share & learn. We all have days where it is great to share w/others who are or have been there.

However many don't share the good, which can be a big help to those "considering" a med. Here's a place we can do that. I'll start:

I have learned that Tec is working although prior to Mon I could not have proved it. See thread "Good News learned Hard Way" (or something real similar).

I have had very little issues with Tec. A little flushing but nothing I can't handle. A little red, some itching but not much else. GI problems have not been an issue. Actually has helped w/constipation some. I'd call this one a YEAH!

Overall I'm glad I switched from Avonex. Been dealing w/MS for 6 yrs now & took my shot weekly, faithfully but do NOT miss it.

Good Luck to my MS sisters & brothers!

Penny
THANK YOU PENNY for posting that. I need to read something encouraging -- as I'll begin next Tuesday with my first dose....

Colleen
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  #3  
Old 06-20-2013, 09:18 PM
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ggnutsc ggnutsc is offline
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I'm good with Tecfidera

I am in my second week of the higher dosage of Tec... The first week of 120mg dose I had no recognizable problems. The first week of the higher dose I had a little loose stool for about one day, and then that seemed to aggravate my diverticulitis and I ended up actually constipated and feeling poorly for a couple of days...

It was short lived and I loaded up on fiber and now I'm all good. Since then it's been smooth sailing and I have to say other than a little mid-day fatigue,(which I can't positively attribute to the Tec) I am pretty much as good as I've been.

I was on Rebif until Feb and stopped it when we found it was not really working. I felt a lot better after getting off of it... Going on the Tec has largely been a non-event, and I must say it's better for me than the Rebif... Time will tell, but I think it's the med for me...

For the record I took my first dose on June 1st.
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  #4  
Old 06-21-2013, 12:42 AM
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Camsue Camsue is offline
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Hi Penny

thanks for posting that! I have been on Betaseron almost 19 years and am so tired of these shots!

I am also afraid to switch because I am better now and I'm not sure what would happen if I changed meds. Nice to hear someone has switched and is doing okay...Thanks!
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  #5  
Old 06-21-2013, 07:32 AM
Dreams008 Dreams008 is online now
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In a week, I'll be going on my third month of Tecfidera. I have had NO GI issues. I do still experience flushing from time to time, where my face gets very red and hot, but it lasts maybe 20 mins and it's gone. I also get a runny nose and slightly congested in my ears and head. Weird I know. But I know it's from the Tecfidera, as it always happens when I take the pill and then goes away. I don't experience these symptoms until about a couple hours after taking the pill. Strange, but least I know when to expect it. I also got a little rash, but nothing I can't handle. I saw my dermatologist yesterday and he's putting me on a steroid cream that he said should clear it right up. Just had my blood work done after a month and a half of Tecfidera to check liver and wbc values. Everything is good. All and all, experience has been positive with Tecfidera. I will make sure to get blood work done every couple of months to monitor levels.
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  #6  
Old 06-21-2013, 08:12 AM
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agsgmom agsgmom is online now
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Thank You for the good Tecfidera post!

Thank you for telling us the good things about Tecfidera.
I started Tec on Wednesday, so far so good. I actually went into my garden (which I haven't been able to do) & clipped some blooms!
Actually has helped w/constipation some. I'd call this one a winner! No GI problems yet, alittle flushing, but otherwise no new symptoms
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I used to be in control of my body. Now the body is in control of me!
DX RRMS 1997 SX 1995 or earlier
Breast Cancer 2002 thought the chemo put me into remission. Boy was I wrong!
DMD Avonex 5/11, Baclofen 60mg 10/2012, Tecfidera 6/19/13
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  #7  
Old 06-21-2013, 09:49 AM
hhobbs hhobbs is offline
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Smile THANKS!

Thanks so much for starting this thread. I have been so nervous about starting this drug and I should be getting it in the mail any day. I've heard so many bad things about the side effects and I would love to hear more good stories. I hope I'm going to be one of the good stories I can post on here!

Tysabri was really good to me, but I had to come off due to the PML risk and I'm JC virus + and prior immunosuppressant use. If this doesn't work, I may have no choice but to go back to it since it's the only drug I've tried that controlled my MS. I've tried EVERYTHING!
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  #8  
Old 06-21-2013, 10:14 PM
mrscoyote mrscoyote is offline
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I started tec May 8th and have had no side affects. I have taken it with and without food with no problems. Am unsure if the flushing I have experienced is from the meds or just being 47 and movin into premenopause. It has only happened in my face.
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  #9  
Old 06-22-2013, 01:12 AM
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ladybug162 ladybug162 is offline
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Been on Tec for a week now and have only had some mild GI issues which I can still not 100% blame the med for. My neuro started me off slow and I've only been taking one 120 mg this past week. Tomorrow I increase it to 2 a day. Then I go to the 240 mg the following week.

So far so good! Hopefully, I'll continue to do well. I'm just so happy that I don't have to give myself a shot everyday as I am so afraid of needles! My neuro gave me a choice between Copaxone and Tec....well, I quickly chose the Tec!

Wishing us all success with this drug!!
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  #10  
Old 06-22-2013, 04:12 AM
Teddy123 Teddy123 is offline
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A positive and a negative

Ok, so I am starting on my 4th week. I had absolutely no side effects till Thursday night. I have burning in my stomach and am crampy. I'm trying to ignore it because I am staying on this med. No more needles. (Used betaseron for 6 years and Tysabri 7 years. Dx'd 22 years ago.)

Here's a positive. My legs are not as stiff, my balance is better, I can take about 10 steps without grabbing for something.i am also walking faster. I hope the longer I am on it the better it will get but I am not getting my hopes up too high.

I hope this side effect doesn't last long but what can you do but hang in there. Lets all just support each other and we will get through this. Hugs--Amy

A question- when I post a thread is there a place I Can go to see what other responses on or do I just have too look for my response or thread I started?
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  #11  
Old 06-22-2013, 05:34 AM
penny70 penny70 is offline
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You sound like me.

Quote:
Originally Posted by mrscoyote View Post
I started tec May 8th and have had no side affects. I have taken it with and without food with no problems. Am unsure if the flushing I have experienced is from the meds or just being 47 and movin into premenopause. It has only happened in my face.
I'm almost 43 and was having a little flushing just prior to starting meds so can't say it's all Tec. A wonderful time to mix meds & mother nature. Which is it...HMM Flip a coin...Heads meds...Tails mother nature.

Glad things seem to be going well.

Penny
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  #12  
Old 06-22-2013, 08:49 AM
tracibk tracibk is online now
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I am very happy with Tec! The very first pill I had flushing and full body rash but then that was it. I have had random itching (especially my head) and random runny nose (someone once described it perfectly saying it felt like a nose bleed). Best of luck to everyone!
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  #13  
Old 06-22-2013, 08:25 PM
hope32 hope32 is offline
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This is an encouraging thread. It's good to hear both the good and the bad!
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2001: 1st 2 relapses, "probable MS." 2007: 3rd relapse. Dx of RRMS confirmed by MS specialist. Started Cpx. (Off Cpx Feb 08-Mar 09 to start a family; twins! ) Dec '09: Started Beta! Oct '13: Started Tecfidera!
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  #14  
Old 06-23-2013, 08:17 AM
Mkc3031 Mkc3031 is offline
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I'm into my third month on Tec, knock wood, have had no side effects at all
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  #15  
Old 06-23-2013, 01:02 PM
hope32 hope32 is offline
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Quote:
Originally Posted by Mkc3031 View Post
I'm into my third month on Tec, knock wood, have had no side effects at all
That's wonderful! Thanks for sharing.
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2001: 1st 2 relapses, "probable MS." 2007: 3rd relapse. Dx of RRMS confirmed by MS specialist. Started Cpx. (Off Cpx Feb 08-Mar 09 to start a family; twins! ) Dec '09: Started Beta! Oct '13: Started Tecfidera!
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