My tysabri nightmare part I - please read

[saraht79]

Ok, a while back I told all of you that I was going to try tysabri and that I would tell you my experiences with it...well, the whole thing has been such an ordeal that I just haven't had the energy to write about it but I think it is important to share. Bear with me.
It started out as a complete financial nightmare. Where I live, there is only once infusion center that is approved by the TOUCH program to dispense tysabri. It is a cancer center owned by a large corporation. They first told me that it was going to cost $400 a month to get the infusion (out of pocket...after insurance and up until I met my max out of pocket with my insurance). Well, that was a lot of money to me. The TOUCH people (who are supposedly there to help you) said that they could refer me to some programs to offer financial assistance. Well, those programs had already given all their money away and I didn't qualify for another of the programs. I asked them if they were aware that they were referring people to programs that had no money. They were not. Meanwhile, I had to go visit the cancer doctor to "get established" as a patient so that I could get infusions there. He point blank told me that he did these infusions "as a favor" to my neurologists and that I would never be seeing him again. He said that he would try to see if he could lower the cost, but was doubtful if he could help me( i feel like he just said that so he looked like a nice guy; i don't thnk he tried too hard. after all, he is a cancer doctor and I am an MS patient. What does he care? He just does this as a FAVOR to my neuro; i'm just money in his pocket). I explained to him if his office could go through my prescription plan that it would only cost me $25 a month and plus the cost of the infusion. He said that his office termed that "brown bagging" (as in bringing your own med) and that they have a policy against that. he gave me a bunch of bullsh-- about how medicare expects them to mark up the price of the drugs and if they don't that they can't afford to stay in business and that they contract with companies blah blah blah blah I waited TWO HOURS in his waiting room to get that news from him. I was in tears in the office. I felt like I desperately needed this drug and that I had no way of affording it. He called me two days later and said he couldn't lower the cost. I spent a month in the phone with the TOUCH people (trying to find another place to do the infusion), my neurologist, the head of corporate of the cancer doctor's company, the company that makes tysabri etc etc etc. Keep in mind I work nights. All these calls had to be made during the day. It was a two month ordeal of almost daily phone calls trying to get this affordable. To no avail. I can't even describe to you all the amount of stress all of this was. It was awful. I felt like people weren't helpful. everyone referred me to someone else. I was trying to be proactive in my health and being in the medical field I knew how it all works and I knew I was getting screwed over. I yelled a lot on the phone. I cried a lot. I am sure I am hated by a number of different companies and I KNOW I am hated by that cancer doc and his entire staff and company lol.

I finally decided to bite the bullet and take the drug - figure out the finances later; do a payment plan; make it work. I schedule the infusion. A day before the infusion they call me and tell me it is going to cost me 1200 to get the infusion - payment up front or at least some form of pay plan. ?????????????? what happened to $400? They tell me that that was the medicare price and someone quoted my price wrong. I'm like " three different times someone gave me the wrong price?" I cry. I yell at a lot of people. I tell them they are ripping me off. I tell them the drug costs 2200 - how can they be charging my insurance 6000 for it? My father calls people for me because I am too upset to talk to people. I yell at the TOUCH people and tell them they have to give their patients more choices because I was essentially paying practically a house payment to get the drug. It was awful. But I go in and take the drug anyway...

They tried to do a CBC on me prior to the infusion. I explained that  my lab work was being followed by my neurologist and that he had already performed lab work; plus, the day I give that office a cent more of my money to perform unecessary labwork is a cold day in hell. They aren't happy about this. The cancer doctor comes out to talk to me. He basically reiterates (in a nice way) that infusions like mine are just a favor and essentially that I am a pain in the ***. I explain to him that I would like to be anywhere but his infusion center especially with how much they are ripping me off, but that he is the mononoply and i have no choice ( at that point he chooses to continue to converstaion AWAY from his other patients ha ha). I also reiterate that he was the one that said I only see him once and never see him again and that my neurologist is the one that is following me - thus the neurologist will dictate my labwork.

So the infusion starts. Thirty minutes into the infusion I get a weird reaction. My husband told me I looked like a blueberry I was so flushed. I felt like i needed to cough. But my vitals were stable, my airway was stable. They stop the infusion. After ALL THAT they stop the infusion. And after ALL that I get a n explanation of benefits (EOB) from my insurance - that company was only allowed to charge me 519 for the infusion. They caused all that stress and ended up having to refund me the money that they INSISTED I DEFINITELY owed them. I was mad.

I was unsure whether I could take the drug again. My neurologist consulted with my specialist and a representative of the drug company. They said that it was a common first time reaction but that usually it doesn't happen the second time. My neuro felt comfortable trying again as long as he was premedicating me with benadryl. I agreed. I went to the second infusion

Twelve minutes into the second infusion I flushed and my chest kind of felt like an asthma attack was about to start, but five minutes later it went away. The infusion completed. During  the hour that the pumped normal saline into me I began to have SEVERE abdominal cramping. I felt like I needed to go to the bathroom but that was not what was wrong. It went away after forty minutes. My nose was a little red.  I go home.

I go to my bed to sleep and all of a sudden I am writhing in pain. My legs feel like they are "cramping." It is the only way to describe it except I was aware that it wasn't my muscles that were cramping. It was unbearable. I can't get comfortable. I am close to tears (and I have an EXTREMELY high tolerance for pain). It only feels better when i walk around. I take advil. It goes on for 40 agonizing minutes and then goes away. I sleep. I wake up and my chest feels heavy like and elephant was on it. It hurts when I take a deep breath. I call my doctor. He says no more tysabri for me and I agree. I assure him I am not having trouble breathing. He says to go to the ER if I do. He suggests putting me on copaxone in a month ( i was on rebif prior to my start of tysabri).

Now...two days later: my chest still hurts. Old injection sights (like three months old!) are suddenly red again like I just injected my old drug. I have petechiae on my lower legs and they are slightly edematous (which, to my understanding, can be a result of an allergic reaction).

AFTER ALL THAT I am one of the people who is allergic to tysabri. Go figure.
I am kind of soured on all medication at the moment and the entire medical field (save my neuros who are great)
Right now I think I want to be off of medication for a while. Maybe 6 months, maybe a year. see how I do. This has been so awful I can't even begin to explain.

[SarahL2491]

am so sorry to hear of your problems and reactions......typical bs from the medical comminity though!

[Lulu54]

Hi Roger,
It is horrible to hear your girlfriend is going through this problem.  I would assume that the doctors have run all sorts of tests to verify that she is not having the problem with PML from her tysabri infusions?

If you can, would you start a new thread where more people are likely to read your quesiton and  perhaps help?

I am sorry you are both having this problems.
Lulu

[roger78]

can u please tell me the outcome bc my girlfriend is going thru this right now and there are no answers for her she cant walk anymore and pain is so bad shes been in hospital for 3 weeks!! can u please email me ***@****

[Dianacross]

Wow, what an awful experience.  I've been on tysabri for over a year now and have developed a bad itchy rash with the last three treatments.  I'm waiting the results of an antibody test.  What a pain.  The itching gets so bad that I can't stand it, especially when I get hot or just in the heat.
I hear ya about going off meds for a while.  I also was on rebif before tysabri and copaxone before that.
When I started on tysabri I contacted NORD (National Organization for Rare Disorders) to help pay for the drug.  It was a real process, but it really helped.  They helped with the co-payment assistance .  I no longer need it since our insurance changed.  I can really relate to being on the phone for hours and days.  People are just not on the same page.  They all tell you something different.
Well, good luck and I hope all goes well!

[JonM]

Thank You for the story.  Good info.

Jon

[sllowe]

bump....I had not seen 1 yet...sorry.

Will try to keep I and II together for today. . .