This was one of my reasons for quitting copaxone. All the harassing calls from Shared Solutions. Any little mention that I skipped a dose, or if I told them I had 3 months worth of C in my fridge they'd freak the heck out. (they started sending it to me 3 months before the injection nurse finally came over to teach me to use it. By the time I quit, I had FOUR extra boxes!)

When I called SS to tell them I quit, they kept harassing me for months afterwards. I never did understand why they were so...obsessed with me stabbing myself. It was my choice to start the stupid stuff, and my choice to quit. They were probably worse than the neighborhood meth pushers.

OMG that is so rude of them!! If you're getting an infection after EVERY transfusion that should be considered as an adverse reaction!

hope it all gets sorted out!

Whats funny about it is that she tried to tell me I was being unreasonable in refusing this med until my doctor is covered and she proceeded to tell me that they can give me antibiotics with the infusion to ward off the infection. My question is... I have been on this drug for a year and a half and had 18 infections, 18 trips to the pcp, 18 trips to the pharmacy, and 20 rounds of antibiotics. WHY have they not offered this before??

She tried to bully me into taking the drug and I was frustrated to the point of tears. The conversation ended with me telling her if the doctor wants to discuss this, she may contact me but I refuse to deal with this nurse ever again. When she again tried to bully me asking me why I would prefer a wheelchair I told her I would prefer that she go %^&* herself and hung up the phone.

This is ridiculous. ANd I went through the same carp when I came off of copaxone. They tried the same thing when I stopped Avonex, but once they realized that I had an allergic reaction, they backed off.

And to be perfectly honest, if being in a wheelchair meant my entire month wasn't scheduled around dr's appts and knowing I will spend 2 weeks fighting an infection and I had the energy that I do today... I would gladly pick the chair.

((((((((((((((((((((Legzz))))))))))))))))))))))

I'm glad you're standing up for yourself in this and not holding back. These pharmas and doctors can be truly disgusting at times.

They're 'legalized drug pushers' if you ask me, and they're as harassing, if not more so, than illegal drug pushers if you ask me.

Think they're playing the game of "Awww sick, weak MS'er, can't think for themselves and is desperate - EASY TARGET"?

I sure do.

I'm thinking that the Neuro is taking a financial hit because of your missed infusion. Maybe not......but money always motivates those people the most.

What a hassle just so you can get stuck, then feel lousy until time for the next round.:eek: I can't remember if there was ever any talk with your neuro about the possibility of taking LDN? It's certainly a more friendly drug. Good luck whatever you decide........:):hug:

when I quit copaxone, they really gave me a hard time, and scared the DH to peices. Kept saying that I would end up in a wheel chair, and how dramatic the next flair would be, and did I really want to risk that?? it was so scary! it was THEM causing the stress, and trying to make me feel like I was quitting on myself.

I will tell you in the year since I quit I am healthier, stronger, faster, in a better mood, and can get more of my life completed without dragging thru my day sick and beaten up.

I talked to my primary care doctor about all of this. He is a great doctor who actually listens. And he says under no circumstances should I have this infusion until the insurance is straight and the antibiotics are covered. He says the reason they never offered the IV antibiotics at the time of infusion is because it would do me no good the following week when I get sick. He has not seen any hard data to suggest that IV antibiotics are at all effective for the delayed effects of the Ty and most importantly....

Who is going to pay for that shot of antibiotics at the hospital? Because once again, Biogen would ONLY cover the Ty. He also went ont o give me a list of neurologists in the area and he reminded me that my neuro works for me, not the other way around. Although he agrees I should be back on the TY, he also agrees I should not be bullied into it, and neither should I go into it not knowing when the insurance is going to pick back up. This is something I need to be prepared for because it is my body and I am the one who gets to live with the side effects.

THANK YOU DR RAGHU!!

(((Legz))) I'm sorry you were treated that way. There is no excuse for that kind of behavior. There is a code of ethics for nurses and she broke them as far as I'm concerned. If it were me, I would write her a letter explaining her inappropriate comments. You can CC the board of nursing in your area. Or you can complain to the board of nursing and cc the nurse. Unfortunately, I don't think you are the only patient she has done this with.:( When I worked at the hospital, these types of comments would certainly get a nurse fired. There was no tolerance for that kind of stuff.

Glad you talked to your PCP and that he gave you a list of other neurologists.

I just hate to hear about doctors using scare tactics to get people to take medications. As much uncertainty as there is about MS it always amazes me when a doctor can predict something so drastic....such as ending up in a wheelchair. Why can't they tell us when we're going to have an exacerbation......or a UTI.....or ON? :rolleyes: :cool: