Sunday, July 18, 2010

Saying Goodbye

To Copaxone.

I don't know why I've hung on to this stuff since deciding to stop on June 27th. Maybe because I was unsure about my decision. Yeah, that's probably it. Because I look at that picture and think, "Am I making a mistake?" I'll never know.

Like I've said in past posts on my other blog, you can really never know if a medication is working. Unless of course, you're able to clone yourself to a "T" and give person 'A' the medication and not give it to person 'B'. Then you'll know. Unfortunately, I'm not in a position to clone myself so I'll just have to go with what feels right.

And right now, it feels right to not inject myself anymore.

I journeyed over to the Hazardous Waste Materials location in my area and handed over all my Copaxone. Thousands of dollars worth of medication, gone! Granted, I only paid $9.00 for the medication but still, that's a lot of money.

Oh, but wait! I get back in my car and what do I find after leaving the HWM place? Three sneaky, fully packaged syringes (unused of course), trying to hide behind my gym bag on my front seat. A sign? I don't think so! But I could've swore I heard a voice ask, "Are you sure?"

Hell yes!

They were terminated upon my arrival home. So it's official. O. ffic. ial. I am not on any disease-modifying meds nor do I have any in my possession. A clean start.

Until of course, I get my referral to the Mayo Clinic in Arizona. Oh... the drama there! I'll update soon but I'm sad to say, not much progress has been made. Other than my progressively growing phone bill.


Lisa Emrich said...

When I turned over my remaining boxes of Copaxone to my MS nurse (who would then be able to use them with other patients), it felt so very weird and liberating at the same time. I worked HARD to get access to that medication without spending thousands and thousands of my own dollars each month.

But I haven't looked back and do not regret it at all. Of course, I am using Rituxan to treat my MS and my RA. Hey, did you know that Rituxan is being used to treat Devic's also?

I'm very curiously reading your developments. As someone else who only has lesion activity in my spine and several bouts of optic neuritis, I wonder if I shouldn't ask for the new testing for NMO which wasn't available when I was given my MS diagnosis.

Something to ask about during my next neuro visit. Btw, I feel much better on Rituxan than I have in quite awhile.

Good luck.

Sarah said...

Thank you Lisa! I did know Rituxan was used for Devic's but I didn't know it was used for anything else. Or maybe I did? Hmmm, I do remember reading somewhere that a certain medication used to treat Devic's has been used on many other conditions over the years so maybe it is Rituxan that I'm thinking of.

You know, I tested negative for the antibody. I'm in a pretty crappy category. They say 30% still test negative. Me! They also say that brain lesions aren't typical of Devic's but can occur. Me! I was diagnosed based on my huge spinal lesion and my ON. I look forward to seeing the Neuro Ophthamologist next month so I can get some answers there.

I'm interested to hear what happens when you mention this to your neuro and what the outcome is.

Anonymous said...

I recently stumbled upon your blog and want to thank you for all of your help and support that you give to the MS community. I too have recently stopped taking my copaxone and feel so strongly that was the right decision for me. I have decided to take a path less traveled and treat my MS with diet and supplementation only with the guidance of naturopath I found in CA. I just wanted to say thank you and you are inspiring..prayers are with you.

Sarah said...

Thank you A!

I'm curious to know about the naturopath you found in CA. I'm in Southern California so I'm wondering if he/she is close. That's definitely a course that interest me.

I wish you all the best and thank you again.

Julie Young said...

Her name is Ann Boroch, she is in Studio City, CA. We do phone consults as I live in KY. She also has a website..
Her recommendations have been a challenge, but I have realized I don't have to do everything perfectly. Btw best of luck on your test shoot and interview.