Aubagio or Tecfidera anyone? Oral DMDs....

[anon07072023]

Hi everyone,
I've been taking Copaxone since 2010. With my weight loss I have very little subq fat to inject into and I keep getting bad reactions to the shots. We're first going to try to 3xs a week injections - but worried about those because I have a reaction to the 20mg and with it being 40 mg, it's twice as much.

Then she has to see based on my medical problems (cancer, etc) if I am allowed to take Aubagio. She thinks that oral med is the best for me. She also wrote down Tecfidera, but said she'd prefer Aubagio. I still haven't heard back if it's something I can take. Does anyone have experience with it? Per my insurance, I would have to try Rebif for at least a month before they'd allow me to try an oral DMD. So frustrating.

Thanks!
-Kelly

[1968shell]

I know what you are going through Kelly97. My husbands employer changed health insurance companies and now they won't pay for my current drug therapy Aubagio. I was on Avonex for 11 years but the shots left me with blood clots in my legs which were both painful and debilitating. My doctor just recently change my therapy to Aubagio and I am doing wonderfully with no side effects. The problem is that my new insurance company is forcing me to take Tecfidera, which is the company Biogen, instead of Aubagio. My insurance has a contract with Biogen so they won't even consider another drug until I exhausted all of Biogen's drugs. I have been diagnosed with MS now for over 20 years and I trust my doctors choices on my
current treatments. You need to fight the insurance company and arm yourself with all the information you can find. The American Disabilities Act says your insurance company and drug companies cannot be bias, even if they have a agreement to support one another if it interferes with your health and well being.
I know, I'm fighting that same battle.....I'll let you know how it turns out.

[jensequitur]

I was on Copaxone for four years until I developed an allergic reaction to the shot. The immediate-post-injection reaction that some people get becomes more and more likely the longer you take it. After the 10-11th IPIR, I developed severe itching all over, and swelled up. I switched to betaseron, but never really saw any improvement. My disease started to stabilize and I haven't had a relapse since 2010.

Now my MS doc wants me on a DMD after kiddo is born. I'm okay with that, but I'm tired of injecting myself. I also don't know if my insurance will pay for anything like an oral DMD.

[Lor301]

Hi Kelly, I have been on Tecfidera since March- it took about two weeks for my insurance to be approved- I live in the US

[anon07072023]

Thanks Corrie & Candy.  Corrie, I hope the med won't be too expensive for you once you start having to pay.
Candy, you've run thru a lot of the DMDs. What was your reaction with Avonex?
Good to see you on here, too. :-)

[candy158]

Hi Kelly, nice to see you are back.

So sorry though for your situation.  I did try the Aubagio, and after 2 1/2 months I had to get off because of the reaction of hives and closing off of my windpipe.  Ended up in Emerg.  and then they gave me a 5 day low dose prednisone, and that helped immensely.  Now when I see my neuro in now January, we discuss my next option.  I did not do well on Copaxone, even though I did it for 1 1/2 years, then we tried Avonex, and reacted to that, 5 months had to get off it... then the Aubagio, and that was not for me either.  I 'm hoping the my Dr. will try Tysabri as I know people who have had good success with it.  

I hope you find something that works for you.,

take care my friend,
Candy

[Corriel]

The approval process has been interesting and I am still not approved.

I live in Canada and my personal health insurance has rejected my request twice since I started taking Tec in May of this year. Not enough major relapses and I did not try Copaxone after Rebif.

My province's drug plan just approved Tec in October though so I am going to apply and pay into that next week.

That will be approved and then my personal insurance will have to respond. I know the drug company nurse is working on another appeal for me.

As things stand, Biogen has not been charging me at all so I can't really complain. I will be paying something before January so my fingers are crossed that it won't be too much.

C.

[anon07072023]

Hi Corrie, Thanks for replying to my posts. :-)
Was it difficult to get approved for you to take Tecfidera?

I can't wait to find out if I'm approved for Aubagio or Tecfidera.

[Corriel]

Well, hello again. :-) i switched from Rebif to Tec in May this year.  Like ess, I had a hard time with gastro issues early on and had to go back to the starter dose and ease in more slowly.

Once I cleared the GI issues, the only other side effect I notice is occasional flushing, mostly if my pre-dose meal is not substantial enough.

Hang in there, and I hope your insurance stuff gets cleared away soon.

Corrie

[anon07072023]

Hi Ess. You're not 500! LOL :-)

I really hope they let me switch to an oral DMD. They also wanted me to stay away from Gilenya. I'm still waiting for them to get back with me to say whether or not their medical consultant with the meds think it's safe for me to take. I really hope that it is.

I'm glad the Tecfidera is working good for you now.

[essdipity]

Hi Kelly. I'm sorry you have such crappy insurance. All the meds are extremely expensive, though possibly the oral ones are more so.

Have never done Rebif, but my understanding is that it's essentially the same as Avonex, which I was on for several years. The interferons all have the same side effect profiles--flu-like symptoms, possible depression, liver function effects, and so on. The only one I got was the flu stuff, with extreme aching, shivering, etc. I was largely able to avoid this by doing the shot at night, taking 2 Aleve, and going to bed. On the whole this worked very well.

If you absolutely have to be on a shot, Avonex might be your best bet. Since it goes into muscle and is a deep shot, you avoid the skin problems the subcutaneous ones cause. (Copaxone was a nightmare for me because of this.) Also, Avonex is only once a week. Biogen Idec, maker of Avonex, is also offering Plegridy, which sounds exactly like Avonex but maybe shallower shot, and I believe only once every 2 weeks. You might read up on this.

My neuro is not big on Gilenya, because of possible cardio effects, though for me that could be age-related, as I'm now about 500 :-) I don't know much about Aubagio, and it isn't often discussed here.

I'm now on Tecfidera, which the Hopkins clinic I go to is quite enthusiastic about. I had bad gastric effects at the beginning, but I was backed off and restarted much more slowly, which worked like a charm. So far, so good.

My advice is to read up on all MS treatments, or read them again if it's been a while. There are now 11 possibilities. Your neuro should be familiar with all of them and be willing to discuss them with you.

Good luck with this.

ess