Have you stopped Betaseron, Rebif or Avonex?

[bertabobbie]

I live in Mexico most of the year now and it is nearly impossible for me to get my Betaseron. I have now run out and don't see the likelihood of getting more in the near future.

I would like to hear from those of you who have been on a beta-interferon and then stopped. Did you progress? If so, how quickly and in what way? Did any new symptoms pop up? Did you have a lot of relapses? Etc., etc.

I've been on Beta for over four years and have progressed some. I'm one of those MSers who only has one small visible lesion [c-spine] so can't judge my disease by MRI.

Please let me know your experiences.

Thanks,
Roberta

[BBS1951]

I stopped Avonex in 2004 and have not progressed. I swim a mile every day for anti-inflammatory properties as well as fun and exercise. I use the MS Swank Diet every day as well.

[memedabeme]

There was a bit of a disagreement as to who prescribed Betaseron--a neurologist or a GP. A least that's what the insurance company was saying
when they denied payment...after they had already been paying for a while.

I was off it for less than 9 months and had 1 relapse. When my neurologist
discovered that I was off Betaseron (and why,) a phone call or two later and
a miracle occurred....lo and behold....instant oops!

Since then, I haven't stopped taking it at all, except for the time when my
neurologist asked me to take 1/2 then 1/4 the normal dose, getting my liver
ready for novantrone. I'm back to the full dose now, and I'm taking it in addition to cellcept. Have you tried contacting Berlex? They might try to work something out for you that will help you continue to stay on Betaseron.

[mmcc53]

I agree - the drug companies will do a lot to help you stay on the meds. At $1,000 a month they are willing to help straighten out problems.

I went off betaseron and afte the neuro and I experimented - stopping and starting it turns out that my first observation was correct - it made my MS symptoms worse!

I had been on it for 18 months and didn't even have site reactions or the flu-like problems others have.

BTW - The reason I stopped and started it is that when you are on Novantrone, you stop it on the day of the infusion and restart it 3 weeks later - to avoid over suppressing your immune system.

If it seems to be helping you, though, I would put a lot of effort into staying on it. You don't get the max benefit for 12 -18 months - its much better to to stop and start.

[Cherie]

Can't help you here. From the time I went on Avonex in 2001 till present, I have only missed two doses of IFN while in the hospital for an illness. Rebif since May 2003 and only one relapse since then. There is research showing a greater probablility of relapsing in the 6 months following stopping med than if the med is continued. Several studies by several different sources actually. However, the information as I have interpreted it, showed a slight increase in chance and not an overwhelming likelihood.


Mexico? What has you there? Work? Are you enjoying?

[bertabobbie]

The problem is twofold: I can't communicate with the Betaseron Patient Assistance Program because toll-free numbers don't work from Mexico. And also, customs here does not like to let meds through. Even if you have someone bring them down for you it is a huge risk. I know of people paying fines of $2000 for bringing a friend's meds down.

I mailed my renewal with all my info to BPAP and asked them to communicate with me by email but it has been a month and I have not heard from them.

If anyone can find a regular phone number or email addy for them I'd surely appreciate it.

Hi Cherie, I retired on disability [they approved me in about two months] and we downsized in Illinois [probably will sell it in a year or two] and are building a house in Mexico. We are on the Yucatan Peninsula, on the Caribbean side about 5 1/2 hours south of Cancun; almost to Belize. Our property is on the ocean and the beach is beautiful. You can walk way out into the ocean and find no rocks or seagrass, just pure sand. I bought a walker to use just in the water. Otherwise I can't stand up.

Thanks all,
Roberta

[bluesky63]

I stopped Avonex because it wasn't helping. My neuro switched me to Rebif. I was on Rebif for years. I stopped Rebif because I switched insurance and the new insurance would pay for Avonex but not Rebif, and I couldn't afford the Rebif, plus I had developed NABs anyway.

I honestly don't know what to say about progression. I have done a variety of meds/approaches to address my MS, and while I have had problems off of Rebif, it's not clear to me that taking Rebif is what helped when I was on it or that not taking Rebif is what's been the problem now that I've stopped it. If that makes any sense at all. :-)

Maybe this is ignorant, but can't you just call a friend in the States the usual way and relay info to that friend while he or she calls the 800 number and is on another phone, like a cell phone? A little clunky, but it would be faster, and not much different than what people do when they're hard of hearing and in the same room. It makes me think of an old fashioned movie scene, with a big business mogul on several phones at once. :-)

I wish you luck in resolving your issues. Your new living situation sounds lovely otherwise. :-)

[Jakaloke]

Could you not arrange to have it supplied through a Mexican pharmacy? I'd call MS LifeLines and get their help to sort it out. If the 800 numbers don't work, I'm pretty sure they'd get you a number that does work. Like mmcc53 said, they make a lot of money from Rebif and they'll go to a fair amount of trouble to keep you on it. Betaseron is actually $1600.00 a month (in Canadian $, now worth more than the Greenback, go figure!), and I believe Rebif is similar.

Scott

[memedabeme]

Here is what I found:

telephone number 5447-1906 or
toll free 01800-1083-682

e-mail: leticia.hoyos@schering.com.mx

Maybe one of these three avenues can help lead you down the right road to
getting help with securing your Betaseron prescription. Surely there are people in Mexico that are using it and getting some help from Berlex, it's just
a matter of over-coming the two languages and two countries of origin.
Good luck!
:)Leah

[bertabobbie]

Thanks Leah,

I'll give it a try.

Roberta