Surrender

[mt1111]

I'm sure I posted something like this at the beginning of the week, but I guess our erstwhile moderator deemed it unsuitable. Never showed up anyway. Was the problem that my distress was too discouraging for newbs and veterans alike? Let's see if this one suffers the same fate.

What the subject line refers to is that after two weeks of stopping Copaxone and starting Tecfidera, and not being able to function with the ensuing nausea, dizziness, vomiting etc., my neuro said I should just stop, wait out the week and start up on Copaxone again. No reducing the dose, or any of the other strategies to deal with it discussed here. Just say no to Biogen Idec.

So that's what I've done. Started feeling better Wednesday evening. Relief!

I'll start injecting again on Sunday. After looking forward to an oral solution for two years, this was more than I bargained for. Maybe the next one they approve will agree with my gut better!

[durgastiger]

@MT

I'll ask you the hard question to help you maybe reconsider.
My experience with copaxone.
- Have you been tested for interferon anti-body?
- Are you experiencing the interferon side effects?
- Are you on a strict MS diet? SWANKS or GAPS?
- Do you juice, drink kefir or take probiotics?
- Are you taking any other MS related drugs?
- Are you under or over weight?
- Are you JC+?
- MMJ?
- What kind of insurance do you have?

From what I have read and heard is that tecfidera is an auto-correct of your gut, intestinal tract also. "The leaky gut" If you are vomiting, diarrhea redness tecfidera is trying to correct things.

You can't just pop the pill 2x a day and expect everything to be ok. Just like the interferons there is a list of procedures and tecfidera has them also. Please read through the posts read what others have done to make tecfidera work with them.

Remember your primary MS drug therapy is only 1 weapon in fighting M.S.

[MarkLavelle]

I'll ask you the hard question to help you maybe reconsider.

I do not understand why you feel a need to convince people to use Tecfidera. If this were a more "open" forum (which it isn't), I would probably assume you work for Biogen...

It has become obvious that you have at least one serious misconception about Copaxone: it has nothing to do with interferon. And your questions about diets, other drugs and the rest are pretty much irrelevant to choosing a DMD.

So why do you think it's so important to switch to Tecfidera for everyone?

I agree Mark. Durgastiger is not informed regarding the anti-bodies of interferons, and the fact that Copaxone is NOT an interferon. Just because one therapy is more effective on average than another therapy, it dosen't meen that it will be just as effective for everyone. We need to find an effective therapy for each individual.

>Please stop pushing one med over another!

[MSer]

Medicare and Cost of Tecfidera

My doctor is pushing this through for me, Walgreen's specialty Rx called me today to get more information on my Insurance (Medicare/Blue Shield), I received a package in the mail today that looks like it is to Hold the pills for a week (how BIG are those PILLS?)... so it looks like things are moving right along.... I know everything except the cost.

Has anyone else been approve through Medicare and happen to know what it will cost per month? I'm afraid it will be too expensive monthly for me to use through Medicare.

Thank for replying.

[durgastiger]

@ceramony & mark

I felt TEVA was acting like a child by delaying teh release of then BG-12 by lobbying with the FDA to delay the release of Tecfidera. Once they probably saw how their actions were reacted to... namely copaxone users leaving for another drug therapy.

Which I did for Rebif then it got really fun. I do't work for biogen but I appreciate all their R&D into NEW treatments. Copaxone and Rebif are old horses. Why support them when they do nothing with their profits. What create a Rebiject?

Am I political? Mabe. If TEVA wants to set up show in Israel thats fine with me but I'm not give close to $12,000 a year to them so they can start continue failed trials with laquinimod and a stupid idea of copaxone at 3x a day to compete with Rebif. No innovation from either one of these companies.

Is Tysabri good? Well read the stats and decide for yourself. Tecfidera better then copaxone and rebif and the other pills out. Read the stats.

All of my posts are opinion but I feel Biogen is leading the way in innovation and R&D. Look at their trials they have in the pipeline.

I'm just trying to show my point of view. 2 years on Tecfidera then Tysabri hoping by then they have reworked and made Tysabri even better for peeps with secondary PP. I am JC+ but I know some people who are and are still on it.

I will keep the soapbox chatter to a minimum in regards to Tecfidera being the next best thing because it isn't a cure!

Again you side-step the real point. As I stated, just because a DMD is more effective on average, dosen't mean its more effective for the individual. Also, what's the Isreal comment about? Teva has always been there. What is the most effective drug you can take? You stated Tysabri, yet you are JVC+, and choose not to take it because of the risk. Why not let other people do the same, and stop pushing your agenda on others?

[durgastiger]

@Ceremony

I don't work for Biogen if I did then I would also work for the MMJ field also. I have no agenda but just informing fellow MSers.

I have lost all confidence in TEVA. Once they fought with the FDA to delaying BG-12 from coming out I was done.

You are right but how do you know until you try the medication? I have talked to a few that had to stop but the majority of people on it have had little to no major side effects except flushing and some bowel issues.

And again I have no agenda but Israel does but that is for another forum.

Yes I believe in "my opinion" that Tysabri is the best drug out now. PML aside it is still the best treatment in what it does. I am JC+ but like I said my neurologists both said along with other JC+ people taking it say that it is still a viable treatment with close monitoring.

So this is "my gameplan". Do tecfidera for 1-2 years and hopefully by then the Tysabri secondary progressive version will be out and will be safer or wait for the next best thing maybe anti-lingo 1. My plan.

All the best to you Ceremony.
What med are you taking?
When were you diagnosed?

[MrsBones]

Well, I can say for myself that I have taken Copaxone, Rebif, Tysabri and now Aubagio. Guess what? I'm going back to Copaxone.

The statisticly better Tysabri and Aubagio have done nothing but made me miserable. So I say, mt1111, don't worry about what stats say. Just because a drug is newer doesn't make it better, or make the older drugs obsolete.

Just as everyone's MS is unique, our responses to treatment will be. No one drug, diet or supplement will be right for everyone. Take whatever works best for you.

Don't worry about posts with unpleasant details not being approved solely for that reason. Heck, that's the very reason many come here...to compare what they're experiencing to others who may have had the same experience. The only reason a post would have gone completely unapproved would have been serious violation of the rules of the board, in which case, a mod would have contacted you about it.

If a post was completely lost, it was most likely a technical glitch. I did see your post on, I want to say the 18th, about problems with Tecfidera, so your problems with it are at least posted there.

[Willow63]

I just wanted to add to this thread because I almost delayed important things in my life over fear of possible Tecfidera side effects.

Luckily for me, I decided to start Tecfidera and keep items on my calendar also. I have had only mild side effects.

Choosing and starting a DMD is a big decision that deserves careful consideration. All DMDs have side effects.

My hope is that people don't write-off trying Tecfidera due to fear of side effects that may or may not become an issue for them.

I understand that if someone becomes ill they want to share that info to warn others. I would want to do the same. Those who experience the opposite also want to share.

I just hope people can keep all of the information in perspective and make the right choice for them - for whatever DMD.

Hugs to all!

[hunterd]

**Let's try to keep this thread on topic so everyone can benefit from it.**

Let's not turn this helpful thread into a discussion between members who disagree. No one will win such a discussion. MSWorld guidelines state: "1. INTERNET ETIQUETTE: Show respect for others at all times.

[mt1111]

Thanks for all the opinions folks. One thing I learned in reading this forum is that the side effects vary widely for people starting Tec. Mine didn't allow me to function - couldn't eat, couldn't sleep, couldn't poop, couldn't work.

Yet I was willing to stick it out for the month, it was my doctor that decided to just stop. And I trust her, she started me on Copaxone in 2001 and I haven't had a relapse since October of that year. So there's got to something there that's working for me. It was just the daily injections that were a pain in the butt. And arms. And thighs. And belly.

As for demonizing Teva and/or Biogen, I also saw how Teva blocked Tecfidera because it would mean so many regular customers like me abandoning them and cutting off their revenue stream. That's not cool, but then what about Big Pharma is? I never had the impression that Biogen were the good guys!

Durgastiger asked about MMJ (which I know I had discussed here before, I'm in Maine and have been approved since last December) and one of the most discouraging aspects of what I was going through last week was that even using that wouldn't stop the nausea.

Maybe to some it's cowardly to not just suck it up and deal with it for the 4 weeks or whatever it would have taken to get over the worst of the side effects. Maybe if I could take a month's leave of absence from my job I could have. But we are a small company with 6 people, even being out or not quite there for a week was a big problem. Call me Responsible, I can't help myself!

[mlissa67]

Mt1111...

It sounds like you made the decision based on your own needs along with consulting your trusted physician, that can't be wrong. All drugs aren't for all people just like we all wear MS differently. Go with what's best for you and IMO you can't go wrong.

Good luck

[Remy9111]

Mt1111

You do not have to justify your choices. Personally I think giving a month is a good shot at a drug. We are all so different.

Case in point: I was told Copaxone had the least side effects, if any at all, and that it would be easy to tolerate. Well I gave it 6 weeks and suffered through it with headaches, rapid heartbeat, fatigue, complete cog fog, and nausea so bad they prescribed me Zofran. I was miserable, stopped taking it, and felt like a million dollars within a couple of days.

I imagine Tecfidera is the same. Some people will feel wretched and others will feel nothing just like taking a vitamin.

Everyone experiences a different side effect profile and in addition everyone has a different tolerance for risk. Plus some of us have to be able to function at work which Copaxone did not allow me to!

My neurologist told me he had one patient on Tecifidera with diarrhea so extreme that even 3 days after stopping the drug and taking anti-diarrheal meds he continued to suffer. I have another friend who just had to stop Tec after 2 weeks because she started vomiting every day and had severe abdominal pain.

Good luck!

[Marco]

I can relate to not doing well on medications. I've reacted poorly to a dozen or so medications and now take a number of precautions before starting:
- I try to get drug samples to try out the drug before I spend any of my own money on it.
- I start out on the lowest dose possible and titrate up. Some medications can even be compounded so you can start on a non-standard dose.
- I ask my doctor under what circumstances should I call them, see them or report to the ER with the new medication.
- I only start or stop one medication at a time so my body can adjust to the changes.
- I ensure my wife knows I am starting a new medication and what, if anything, she should look at.
- I use an online drug interaction checker to ensure any new medications are not going to cause any significant problems.

I have learned to not suffer too long on any particular medication, especially when there are other choices readily available. When the drugs side effects reduce my quality of life beyond any potential benefit that drug is basically done.

With Tecfidera, I had flushing, rashes and other side effects that were unpleasant, but tolerable. My side effects have largely abated and I am really happy that my injectible days appear to be over.

I'd probably stay on a drug that helped keep me flare free for 10 years. I do understand the injection fatigue and a desire to be off injectible therapy.

Have you considered aubagio or gilenya?

There is nothing cowardly about wanting a humane quality of life. It sounds like you really had a hard time on Tecfidera and that can happen on any drug.

I just hope your next 10 years are as good as your past 10. Maybe by then we'll have a cure or a clearly better medication choice.

Take care and thank you for sharing from your life so we all can learn.