Copaxone Information

[stepsforNeeC]

Hi everyone, you guys read my recent post about the concerns surrounding dental health and Copaxone and many of you shared; greatly appreciated it and so helpful. My pharmacy called me yesterday to schedule my regular scheduled delivery and the pharmacist assistant always does a standard health screening (missed any doses, relapses etc.) and lastly will ask if I want to speak to the pharmacist. Well, yesterday I did and surprising the information she shared..WoW! I told the pharmacist, about the dentist, sometimes still tired, but no relapses or hospitalization since 2017 just dragging on a few days. The pharmacist pulled latest drug data (I guess TEVA or the pharmaceuticals share) and she shared the "longevity of treatment life" from recent patient studies reported that after 8 - 9 years patients may not feel the same benefits as their initial early tx years. She suggested I discuss side effects and all of my concerns with my neurologist. Amazing...a threshold I guess. Drugs do become resistant, I just wish all the hidden stuff would have been exposed to us.

Peace and Blessings

NeeC WALK MS - Philly.... May 4th

[Lilith08]

Interesting! I guess it might be worth talking to our reps more often instead of just assuming there’s nothing new to be learned.

Copaxone didn’t work for me so now I’m on Rebif. After a recent relapse I learned that some people actually build an intolerance to interferons. Who knew? So I was tested for antibodies but that came back OK.

And then as you said, sometimes a drug just doesn’t work so well after a while.

[Iona60 in reply to Lilith08]

I develop neutralizing antibodies on rebif after 1 year.

[stepsforNeeC in reply to Iona60]

My goodness, I'm going to Walk MS this Saturday, plenty of info from the various pharmaceutical reps. I'll see if anything pertaining to health and long term effectiveness is available.

Thank you for sharing, pray my strength for the walk, so far so good.

Peace and Blessings -

NeeC

[GildaS]

Thanks for posting this. I missed your earlier post about dental health and Copaxone. I don’t think I have had any dental issues that are not consistent with my age (68) but you raised an interesting question. You raise another in this post: whether Copaxone loses its effectiveness after long-term use.

I’ve been on Copaxone since 2002. I have had great faith in it. Any relapses that I have had have been minor ones. I’ve never been tempted to switch. But lately I have been feeling like I am in one long pseudo-exacerbation. So your question strikes home.

Once you qualify for Medicare, the pharmaceutical companies can no longer assist you with your copay. My out-of-pocket expense is breathtakingly high. (I imagine it would be high no matter what drug I took.) I hate to think I am spending a small fortune on something that doesn’t work. But I am reluctant to switch to something that might have a lot of side effects that I would have to get used to.

You have given me a lot to think about. Thanks again for posting. I will be following this with much interest.

[Lilith08 in reply to GildaS]

Gilda, I was asking just the other day about costs when on Medicare. Perhaps you’ve already tried these avenues but I’ll link to the conversation here in case these suggestions help you. I know that without a grant there is 0% chance I could afford my Rebif.

healthunlocked.com/mymsaa/p...

[stepsforNeeC in reply to GildaS]

You're welcome Gilda, we're all in this journey together.

Peace and Blessings

NeeC