attack of the doctors!!
 

My phone is being blown up by the countless cals from my neurology office. They want me to sign up for financial assistance through Biogen Idec for my Tysabri infusion. I missed last months infusion because of the insurance fiasco that I am still trying to get straightened out.

BUT, I feel great! Better than I have felt in years. DH2B asked me last night how I am not tired after all of the running around I have been doing. And my response was simple; there is a lack of poison flowing through my veins and I wasn't forced to be sick for 2 weeks.

Now here is my issue. The docs are adamant that I get my infusion. Understanding that Ty is the only thing that has worked to slow down the progression of this disease since i was diagnosed, I agree that I should be back on it. But there is a problem with getting it approved through Biogen that my doctors are not quite getting.

The financial assistance would only cover the infusion. It does not cover the neuro, the primary care, or the other things that I need. It does not cover the other meds that I am out of, nor does it cover the mandatory follow up with the PCP nor the antibiotics that I will need the week after the infusion. This isn't a "maybe" I will need this. This is a every single time I have had the infusion I have ended up with a sinus infection, inner ear infection, and a UTI. It is like clockwork the week after the infusion and te reason I schedule a follow up at the same time I schedule the infusion.

Why can't my neuro understand how this works?

Maybe he just needs to see it on paper. I would write it all out for him, listing all the follow up and meds and such that you need after the infusion. You can even list costs if you know them. Then bring, fax, or snail mail it to his office so that he can actually see it. Sometimes that helps.

I'm sorry you have to put the fusion on hold for now, especially since it has been helping you. Hopefully, you can start up soon.

IMHO....they're just covering their rear ends. Something to document in your medical records stating that they did encourage you to continue on Ty just in case you do end up with a bad exacerbation. It's in black and white that they tried to get you to take it. :rolleyes:

My Neuro is doing the same thing. Putting the statement "patient refuses to take DMD's" in my records numerous times. I told him that the low percentage rate for possibly reducing the duration of an exacerbation is just not good enough for me to keep putting that poison in my body. Of course, that statement is nowhere to be found in my records. :mad:

I kid you not, no sooner than I hit send on this thread my phone rings. Seems my doctor took it upon herself to contact biogen on my behalf and gave them my phone number. Now they are calling me too.

Is it wrong that one of the reasons I don't want to go back on this drug is because I don't like being harassed?

:circlelove:(((((Leggs))))):circlelove:

That sort of sounds like a breach of patient/doctor confidentiality to me. I wouldn't want my phone number given out to anyone without my prior knowledge and consent.

Turn off the ringer, stop answering the phone. Talk to the NURSE that is charge of the MD office and explain to her what you are talking about. either she will get it, or she wont.

Tell Biogen DONT CALL BACK I will call you once I have this straightened out with my md. till then, YOU are stressing me out, so STOP!

Then...get on with your life. Once it all gets figured out, go back on TY. Till then you cant do it half way. you need the WHOLE ball of wax, not just the wick to light the flame.

3 calls from my neuro 1 call from biogen and I am one unhappy camper. I explained to the nurse the infection issue and I was told to stop making excuses and asked if I would rather be in a wheelchair or deal with a little infection. I told her I would rather speak to the doc from now on as she was obviously a moron with no experiencce in handling this disease.

What a turddddd!!!!!!:mad:

boy, something about all this harassment rings of lawyer to me too.
it is just plain wrong.
i like tkrik's answer about putting it all on paper, including all your costs.
sign it and send it to the dr. they will have to put it in your chart. that may counter your dr's negative documentation. and ask to see the chart to make sure it's in there.

i don't want you to be sick but that's a lot to go thru for this med.
and, i'd send it to biogen too.

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:

I don't know a whole lot about Ty other than some of the side effects and some of them being serious. So, I just have to ask this as it concerns me. How common is it to have infections like what you have after your infusion? Is this a normal side effect? Do most people get that? Again, it concerns me as I know that Ty causes PML and I would hate to see that happen to you (or anyone for that matter). You have been through enough already. :hug:

BTW - I hope you don't mind me asking that. It's just been worrying me a bit.:o

NOt really sure, it depends on the person I think. For most people I see posting on the TY board, they can tell when it is time for their infuion, it gives them this like burst of energy and makes them feel great.

I don't get that at all. I get an inability to do anything for 2 days where I feel like someone drained the life out of me, then I feel ok, then the next week I get sick. I know a lot of people have the sick effects, which was one reason I asked about changing the schedule from every 28 days to every 6-8 weeks; which started the whole argument with the neuro in the first place.

I did get tested for the JC Virus which seems to be a determining factor in PML. No one with PML ever tested negative to the JC Virus, which would have been the end of the ty for me had mine tested positive. As it stands, I have been looking into other options because the longer I am on it the more I dislike it.

wow Legz, they sure are putting you thru the wringer with this.

I don't know how this info might affect you, but I've been off the betaseron since 28 June, saw my neuro (am still off it) and he said the evidence shows that when a person has been doing well on a DMD that when they stop, they typically do well for 3-6 months, then begin to have more lesions and a return to problems with the MS.

that would lead me to think your idea of every 6-8 weeks would be good for you since you don't get much time to feel better after an infusion. Also--it is YOUR body and you get to make the decisions here. They may not like it, they may recommend against it, but ultimately it is your decision.
http://i17.photobucket.com/albums/b5...BigBearHug.gif

Love your dancing girl, Vic.:cool:

ya know, the other thought i'm having is about all these doses of antibiotics.
this is generally frowned upon. it can cause you to have bugs that are antibx resistant. then if you get an infection they don't work and you can get a superimposed worse infection.

i wonder if that has anything to do with your bouts of infection?