MS and RA patient advocate, Lisa Emrich, shares news and information about living with multiple sclerosis and rheumatoid arthritis.
I would go there, but this is kind of question drug companies use to figure a stategy to change our minds. They can visit my blog or pay me first. FYI The NMSS refused to note the MS Voices book I and several other MS bloggers are in. Yeah, once again they could care less about me. It wouldn't cost them a dollar to type a promo on their site!! Well, this book will help more newly diagnosed people than their web site will, in one reading!
Diane,I think it would be interesting for the pharma marketing to understand that often their spin does not truly affect our decisions or choices. Things like cost often make our decisions for us.Hey, I have a contact at NMSS now. I'm going to send a little note and see if they can't do a small write-up. Maybe I'll even write it up for him in advance. No promises made but I do know from first-hand knowledge that NMSS is wanting to reach out to the MS blogging community.
I initially started on Copaxone. Had the chest tightening reaction twice (horrible for someone who has had a pulmonary embolism)..so I switched to Rebif last year and like it better.
I'm about to switch to Rebif because Copaxone isn't working. Unfortunately there isn't anything they can do to keep me unless they make medication that will stop my lesions from growing.
I hope you are right, Lisa, they certainly have a poor record of reaching out to me. Maybe I am asking for too little. I had a friend who got help with an air conditioner. I will be full of gratitude if they have space for a blurb about The Voices of MS (I question their feelings toward a non-profit, 100%profit to a Healing Project, foundation...I hope I am proven wrong.)