I get the usual questions.......The IV is started with a bag of saline, then the pharmacy is called. My infusion center will not call until the saline is started. When the Ty comes it is ran with the saline and the saline runs until the end of the hour observation.................They take my blood pressure unhook me and I'm off for another 4 weeks.........Barb

So what is the bag of saline supposed to be for? Maybe my pharmacist just mixes the medicine in with a bag of saline and that is what drips for an hour.

I definitely do NOT have 2 different bags. Just the one with the Ty.

I'll try to get a pic of the setup when I go in December. I wish I had a video cam so I could vid the whole thing and put it on you-tube!

Speaking of you-tube, there are a lot of videos out there now from people on Tysabri. Just type Tysabri into the search and check them out! I think there are a few that show the process the people who are posting them go through when they have their infusion. If you watch them, don't forget to rate them and comment! :)

They switch me to a bag of saline when the bag of Tysabri is empty. It drips for about 20 minutes or so, usually until the bag is at least half empty. Then they remove the IV and I sit until the hour mark of when the Tysabri bag was empty. Then they do all the usual checks of vitals and check for rashes before I leave.

I'm just home from my infusion, and I thought I'd let you know how it went!

It was a rough Ty day! Normally, one little poke and the line is in and good to go. The nurse let the first one roll around on her til I told her to stop. Try #2 was a no good, Try #3 was a no go. Try #4 with a little patience finally got her in.

Then she didn't realize they had delivered the medicine, so I was almost an hour before I even started the drip.

I kept the heating pad on me the entire time, even putting it on the line as it went in hoping to keep it warm. My bp was up a little today. Started out temp of 98.1. Midway through 98.3, bp horrible. Did the shakes and stretches at the same five minute mark post med as usual. Stood up about 5 minutes into the shakes, that seems to help slow em down. I probably only had about 15-20 bad minutes instead of 30 this time.

Got a headache this time, so I will pre-medicate next time with the Aleve when I first go in. I haven't had the headaches, or flu-like aches I'm kind of feeling now.

She took my temp again close to the time to go, it was 100.4! So dang it, she took my heating pad away :eek:

I went to the bathroom, she took out the iv thingy, took my temp again and it was down to 99.2 so she let me go home.

Now what?

Is the antibody bloodwork hard to get like the Rebif was (special procedure, not really hard)? Or can I just go to my regular blood place if the neuro decides I need it?

When I go in December I will ask about the test for antibodies. I am not sure if I had it or not. All the tests and bloodwork tend to run together after awhile! I know I have been to the lab every three months since I started, but I don't have the list of tests run on hand.

Hope everyone is feeling well this Saturday a.m. I am huddled in a wool blanket in front of the woodstove waiting for the fire to catch! It's AAAACK snowing out and I am NOT looking forward to going outside to work on the woodpile!

The antibody test is just a blood test, but they send it off to a special lab (I think it's in California?) I had it at about six months or so as a precaution and it turned out negative.

My local clinic made a big deal about having to do the test because they had to ship it Fedex next day on dry ice. :rolleyes: You'd think I was asking them to do a heart transplant as an office procedure. Sheesh! Anyway, they said if I need it again I have to have it done at the local hospital.

Sorry about the infusion mishaps, I hope next time is better. :hug:

What could Anthem Blue Cross be thinking?

Profit, profit, profit...at an unethical rate...

I have MS, and so my rates have gone up and my coverage and out of pocket expenxes, as well as my deductable have all increased.

How about adding another 20% to your premium Mr. Victor?
Oh sure....No Praaablem...

Anthem Blue Cross must be thinking that MS'rs are rolling in cash, or that they can price us out of having insurance completely....OR....they realize that Obama's plan will provide a little more of a tax break (which is assumed to mean more money for the individual...which it is NOT) and they can soak us for a little more...

Now that my Tysabri costs are gone, one would think that a more reasonable increase would be fair.....but alas, a 20% increase is now mandatory and benefits are garbage.

Yeesh.

I hope that they go bankrupt after a new all-inclusive plan for healthcare is created.

......and now back to our regularly scheduled programming...


-Vic

PS...

...How do they expect a family of two (2) to pay over $20,525 per year for their insurance?

Sheesh is right, Vic. If you're not in the poorhouse yet, Insurance premiums and out of pocket expenses will put you there.:mad:

The poorhouse is in our "Uptown" neighborhood. We live under a rock now.

I guess this is the way Anthem Blue Cross says "Seasons Greetings, ..., now bend over".

Yeesh.

Hi Everybody,

I had infusion #20 Wednesday and it went well. I have really really good veins. My nurse worships before them each month. :D She said if everyone had veins like me her job would be a lot easier. In particular my right arm, she loves that vein. I said, oh yes, everybody should have one of those, lol.

Anyway, I had no new lesions on my MRI. :) Also, my fatigue was not as bad this time, probably because of the Provigil?

My eye doctor had mailed my eye test results and the neuro was training the nurse with the images. He said I had some evidence of damage from the MS in the past. I'd always thought my eyes were ok, I don't remember anything happening though I have had some pains in the eyes sometimes... :o

Oh well, until next time, Dec. 17th...

Vic,
I'm sorry about your insurance. I find insurance all so frustrating. I have two different insurances, and the second one actually covers better than my primary.

But instead of say, taking my Ty bill, and Blue Cross pays all but $500, instead of Aetna, just paying 90% of the $500 that didn't get paid, it looks at the whole bill, subtracts what's already been paid by Blue Cross, and then pays a few dollars. I'd have no problem with that if our premiums were less because we have other insurance.

They'll say they are liable for an amount, like $1500, but then because they other insurance paid $1400, they'll only pay $100, and I'm left with a huge bill. It doesn't seem right, but I can't get anyone to listen to me. They say it was the way the policy was bargained.

I guess I'll just be happy I have the insurance. My MS bills and regular check-ups this year will be close to $30,000. I've probably had to pay $2,000 of that. I just put money in a flex account, and be glad I can afford the medicine.

Our 19 yr. old son had a rough medical year though. He is a very healthy kid overall, playing varsity sports to the max his senior year. He's had tachycardia since birth though that we finally fixed, and had to have an emergency appendectomy! His total medical bills this year was over $53,000! And he is only covered under one insurance. So I'm looking forward to 2009 and getting medical bills back under control!

Vic,

Is your plan an individual policy or a group plan? At work we have a group plan and it only has two people on it. They get a break in costs and get the benefits of a work plan compared to an individual plan. In Illinois, you only have to have two people on the plan to have group insurance.

Theirs goes up each year because of age and minor claims, but our agent offers us new plans with other companies at a much lower cost each year. If they wanted to they could switch to the other insurance company plans and save lots of money until they were adjusted at the end of that first year due to claims, etc... Could you possibly do a group plan and add your wife as an employee? Just a thought...

DH and I are on his group plan through his union and we still pay about $15,000 a year for monthly coverage and out of pocket because of the MS. If I was on the plan at work, the company (and each employee) would probably be paying twice as much as we are now if we stayed on the same plan year after year...

This is one of the main reasons I expect to keep working as long as I can... who could afford this and retire? Certainly not me!

Glad you're doing well and a bit jealous of "that" vein-but doing ok with my difficult ones;) Sorry for the eye damage but since you're not aware of it can't be too bad.
I will have #28 Fri:D and a couple of weeks ago my bladder started improving-YEA!!!!
alias lindaincolorado

I think I should take out insurance on the special vein, lol. I know I'm very lucky to have good veins, and I hope they stay that way! :)

I had my 6th Tysabri infusion this afternoon. I came home and collapsed on the couch and fell asleep for 2 hours. When I woke up I had a low grade fever, nausea, headache, some dizziness...just general cruddy flu-like stuff. But hopefully it will be like the 2nd time around (same feeling after the 2nd infusion) and I will be feeling back to normal in 2 days. I certainly hope so. Today was hard. There were a number of people in the MS clinic who were pretty bad off, including the 3 other people getting Tysabri with me today as well as some in the waiting room. Not only do I feel for them but I also worry about my own future sometimes. Maybe I'm just extra prone to stress because I'm feeling pretty darn crappy right now. :( I snapped at the DH because I wanted to control the remote and snapped when he tried to move my laundry out of the laundry room. Hmmm....pretty clear I'm not feeling in control right now with this MS monster. Trying to keep positive!

I hope you'll feel better in a couple of days Natalie! :hug: I had a lot of days in the beginning where I'd feel total exhaustion for a few days following the infusion. I hope that's all it is and you'll be ok soon.

Natalie,
I also find it hard to see others with MS and their struggles. I have a neighbor with MS, and she is pretty much in the same shape I am, not a lot of symptoms, just the overall fatigue much of the time.

We both work full-time and do all of our other motherly/church/ neighborly stuff. So when I see someone struggle to walk or show up in a wheelchair, it gets me thinking.

I start thinking of how I should remodel my house to accomodate wheelchairs and things like that. Maybe if I plan for it, it will never happen!

But life is good, and I'm glad I have insurance that will help me afford Ty, and I just do the best I can!

I'm like you 4boysmom. Not a lot of symptoms either. But I have 9 lesions and some black holes. So yes, I worry about the future sometimes. I did read a story about a woman who was diagnosed with MS after she had bought her dream home. It had 2 floors -- she sold it and bought a one story home because she thought she might be in a wheelchair and unable to use stairs. Well many many years later she was still walking and regretting she had sold the dream house. I think it is good to plan for the future but also probably good not to overplan so much that you don't live your life to the fullest.

General questions for everyone:
1. How often does your neuro do an MRI while you are on Tysabri? It's standard to have one at the 6th month mark, right? (I just had my 6th infusion). What about after that one?
2. At what point did you all get tested for the antibodies? I think I got panicky after Monday's infusion that I was having some kind of reaction that typically suggests antibodies (nausea, fever, dizziness--at least according to the Tysabri insert). Has anyone developed antibodies further down the line? I think I had the test at the 3 month mark -- never heard anything so I assume everything is ok.

I've had 8 infusions, and my neuro has not even mentioned an MRI or the antibodies test. I did have bloodwork done at 3 and 6 month mark. The blood I gave in October, the neuro said it was absolutely perfect! So, he didn't seem too worried about my chills and such after infusion.

Natalie,
I had an MRI right before I started Tysabri, one at the 6 month mark and one at the 18 month mark.
I have bloodwork every three months, but I haven't had the antibody test, asked about that yesterday, and my doc said that he doesn't test for antibodies unless the patient has some sort of negative reactions and then it would be done at 3-6 month mark. Transient reactions are reported during the first six months by a lot of folks who are on it, they either usually smooth out or get worse and when they get worse, then you look into antibodies. If there's some sort of reaction later after long term infusion history, he would look into it immediately.

Your neuro may feel that since everything seems to be going along ok except for the chills and stuff, that you don't need an MRI. You may also have restrictions on your insurance since both are VERY expensive. I know my insurance doesn't have any restrictions, but I have an old plan and it doesn't have any restrictions because it is a full service plan, and not an HMO or PPO or Comp Care or Managed Care, so I get them when he wants them with no problems.

OK...now for my report!

NUMBER TWENTY ONE DOWN!!! :yahoo:
In and out in record time of 2.5 hours. No problems, no concerns.
The nurse and I sat and talked about how I am doing. She reports they have 7 Tysabri patients now! There have been a few that came and went but never 7 at once having infusions!

Stopped by to see the doc. I was supposed to have an appt after infusion, but I was there early in the day for testing for something else and he had called my house while I was in the other thing, so I just invited myself up :D. He said my MRI was wonderful, blood work came in just lovely, gave me a copy of MRI report "to frame", told me don't come back later, and off I went to infusion.

MRI report: NO new lesions, NO enhancing lesions, Further decrease in large lesions previously reported on, some are gone COMPLETELY! Nothing new to report!:yahoo: :yahoo:
Bloodwork: All levels normal, nothing to see here. Normal WBC count means you are clearing Tysabri as you should, liver panels normal, now get out of here.

( I'm pretty sure it's working now...:p)

I wasn't too worried about the MRI part, because I've had them yearly in March. I figured after a year on Ty, that would probably be when he wanted me to have another done.

My next appt. is in January, so I'll just keep on keeping on!

That is so so great!!! It put a big smile on my face today. :) (I was reading this on my I-phone as I was waiting to give blood at the MS clinic).

After my second Tysabri infusion I had new MRIs of the brain done. Also, no new lesions, none enhancing, and some had disappeared since the MRI done in May of this year.

Just had Ty#3 and having some pain in the lower back but I had that after number two and more fatigue than normal right now. I have high hopes for Tysabri!

Yippee!
Weebs

Yay for the no new lesions, no enhancing lesions and especially for disappearing lesions!!! :yahoo:

Glad to hear it's happening so fast for you!

Thinking on the lower back thing, how's the kidneys? No UTI's brewing, I hope!

Let us know how it goes! :)

Hi
My name is laurie and the day after Thanksgiving I had my second infusion.
No problems. Just felt a bit itchy after leaving infusion site but no rash. Funny thing was my body itched all over above my waist. Went away after about 45 min. My issues start during the night following. I get very dizzy and nauseus when I get up or even lying down but about 8 hours later and I am good to go until I get hit with the fatigue quick nap and since then I have been fine.
I have begun shedding some symptoms and I've only had 2 infusions they told me maybe after the 3rd. So far I am very pleased.

Hope everyone has great results.
I am very happy to have found this site.
Thanks to all
laurie f

Hi Laurie and welcome to NeuroTalk! :)

I haven't had any issues after infusions, but I did have the itchies during a few infusions and I didn't have a rash either!
For the last three infusions we have been turning and rotating the bag to remix the solution and that seems to be working for me. It took me 4-5 infusions to figure it out, so try it and see if it works for you! Are you pre-medicating with benadryl or another antihistamine?

Good to hear you have some symptom relief! Let us know how it goes!

Riverwild

Thank you for the suggestion I will mention it next time.

thanks
laurie

Been off of the big TY for a while and had one round of IVSM.

Stay on the med as long as you can unless it is a huge problem.

FYI - The cost of infusions was my original problem...and once again the infusion people have hit. They just sent me a bill for 5 days of IVSM totaling $11,500 ! The idiots forgot to get it approved by my insurance even though they called in advance to get my insurance info to complete the approval process.

I think,...no I know that they will have to eat this one since we recorded all calls with their approval (of course) wherein they said that they needed pre-approval for the infusion.

Can you believe that 5 days of IVSM infusions cost so much?

Unreal...

-Vic

Boy, Vic!!! It just never ends for you, does it??? Jeez!!!!

Hope the steroids helped!!

Everything is overpriced in California..:eek: move to Ohio:)

Yes, did the IVSM help? :hug:

NOPE. The IVSM did nothing, though I would not have used it unless my neuro-team was not so adamant about it.

Everything is worth a try (well, most things...).:)

-Vic

Hey Vic, Sorry to hear the IVSM didn't help. Hope you are feeling better soon. :hug:
Natalie

I think that the benefits of the IVSM are kicking in!

Yeah!

(But I am still not paying all that money for the treatment when it was supposed to be covered by my insurance.)

-Vic

(((Vic)))..I'm so sorry this is still a problem!
I was to start Ty earlier this year, but had so much trouble getting any info about coverage from my insurance company, I cancelled my appointments. Finally just found the right person last week, and the cost of the drug is 100% covered (yeah), but I won't know how much my co-pay for the infusion will be til I talk to the infusion center. I refuse to have it done til I know what I'm getting into. Why does it have to be so hard?
I hope you're feeling better soon, and ready to kick some infusion center butt! :wink:

For those who have not yet heard, Biogen filed another 8K this morning about another case of PML. I don't have any confirmed details yet, and will post when I know more.

This is what I have from a neuro:
"I haven't heard anything more about the case than is on the 8K. This patient was monotherapy for 26 months and in the EU. This patient's PML is confirmed using accepted definitions of positive PCR in individual with consistent MRI and history. Clinical vigilance seems to have caught this one early as well. FWIW, the last time I got an update, patient 1 (Sweden) was doing well and at home, Patient 2 (Germany) was still in ICU but able to be extubated and able to communicate some (expect permanent sequelae), Patient 3 (US -Florida?) was discharged and doing well. Haven't yet heard what symptoms this patient had. "

Here is a link to an editorial on Tysabri (not this case announced today) and "suspected cases."

This article was written 6 days ago and cites an "investigative news piece" about 22 suspected cases of PML as of Oct. Take it with a grain of salt. Not sure what investigative news piece means??

http://www.healthcentral.com/multipl.../51702/tysabri

It's not what Biogen/Elan are telling us, it's what they aren't telling us when it comes to Tysabri! You really start to wonder what the long term effects of this drug may be.

Harry