Starting Tysabri Tomorrow
 

Hi,

I'm geting my first Tysabri infusion tomorrow. I'm not terribly disabled, just numb fingers and general forgetfulness, but the fatigue is really hampering my life. Is anyone else out there currently on Tysabri? I'd love to share experiences.

I'll try to post again tomorrow night or the next day to let you all know how it went.

Katty

Hi, Katty! Welcome to our scary little bunch of MSfits!

There are some who are currentlyon Ty, I'm working on it with my stubborn ins. co.

I'm glad you found us and do let us know how it went for you.:)

Hi Katty, nice to meet you.:) I hope some people chime in on Tysabri for you.

Please do let us know how you are doing on it. I wish you the best of luck, that TY will work for you.

:hug:

Hi Katty and welcome!!

I am on Tysabri. I will have my 5th infusion in September. So far I don't have anything dramatic to report.

I feel as if my stiffness has lessened. My eyesight has improved because my eye muscles seem to have stabilized. My fatigue has lessened. I FEEL better than I did. I do more than I could before Tysabri.


So far so good, no adverse reactions. I'd say Tysabri is working for me.

I am careful in what I post because I don't want to give promise to people who don't get the same results as I do. Before I post that something is better I make sure it isn't related to anything else I have done.

I hope Tysabri works as well for you!!

Hi Katty :Wave-Hello:
Welcome, welcome. Looking forward to hear how Ty may be working for you. Jump in :trampoline: anywhere, and hope you enjoy the group as much as I do. :hug:

First post infusion report
 

Hi all,

Thanks for your replies. I got my Tysabri infusion yesterday. I was really nervous. I stopped on my way to the infusion center to get some Tylenol and Benadryl. I'd heard that taking them can help prevent side efects. I took them about an hour before the infusion started.

The infusion took place at the cancer infusion center. There were two women there getting platlete infusions and a couple getting who knows what and there was another woman there who'd just finished her fifth Tysabri infusion, which was a major coincidence, as there are only four or five people in the whole county getting Tysabri.
(Big county, lots of people, lots of MS.)

The nurse hooked me up to the IV, chatting the whole time, probably to make me more comfortable. I tell you, I was waiting for some kind of nasty side effects--what I experienced was...well, nothing. I just sat there for an hour with a Steven King novel and then sat there for another hour after the infusion was done, and felt absolutely the same.

I still feel the same. The only difference I've noticed is that it's late afternoon and I still have energy to write this. I don't know if the energy is simple elation, or the placebo effect, or the Tysabri, but I'll take what I can get.

The other Tysabri woman at the infusion center reports no side effects and no particular change in her existing symptons. Still, if all I get out of this, is a halt to the relapses, and a tiny bit more energy, I'll be very happy.


I'll report back in a few days to let you know how things progress.

Katty

Sounds great, so far, Katty. It's good that you dont expect too much. Although some report feeling stronger and better, most don't notice too much of a change.

I hope it stops your progression right in it's tracks.:)

:hug:

Hi Katty, :)

I had my 4th Tysabri infusion on August 22nd, and my next is on the 19th of this month.

I might feel a very slight improvement in energy... I don't feel worse! No new symptoms since I started! And that's a plus!

If this medicine can keep us stable, it will be wonderful. I hope you have good results.

Update
 

I have not posted in months. Just read Katty's post.

Update: Infusion #11 coming 9-5. Things are improved from where I was before Ty. Diagnosed in '84 with chronic progressive. Balance has never gotten any better. Still go to the gym. Strength is good as well as the treadmill. Never improved after my 1st infusion, but did not get worse. Had an awesome effect after #1. Not a typical response to TY.

My doc is doing a blood draw to test for antibody buildup after infusion #12. Has anybody had this done?

Pete

Hiya, Pete! You're kind of a newbie but really an oldbie. Cool, I'm glad you're back.

I'm not on Ty but I figured I'd at least say 'hi' and let you know that it's good to see a new face around here. We have a handful of fun folks and we just chat away. Please do join us any time!:)

Welcome, Pete.:) Thanks for reporting in and so Happy to hear you are doing well on Tysabri. Not getting any worse is a good thing with MS, and if TY is doing that for you..WoooooooHooooooo!!

Nice to have you back.

Hi all
 

Pete, why is the doctor checking you for antibodies? Are you reacting to the medicine?

Ewizabeth, thanks for sharing. No new symptoms is indeed, a huge blessing.

Here's how I'm doing as of day three. I'm mentally more clear--I'm a writer trying to get published. Mucking through all the shadowy, sleepy MS stuff every day is a huge problem. I'm still tired, but it's not the same in your bones, bored, unenthusiastic tired--it's more of a plod along, get things done kind of tired.

My left hand is still numb, although the last two fingers went numb only last month, so I think I can still hope for some recovery there. My eye has mostly stopped twitching, although that symptom comes and goes and it's unclear weather that is the Ty or just the natural up and down of the disease. Finally, my left leg gets a bit draggy at times, at the moment it is strong and I am walking normally, but again, that comes and goes for me.

My most dibilitating symptom so far in the course of my disease, is the MS fatigue and lack of clarity. I don't get much sympathy, as nobody can see these symptoms so even if I explain in great detail, it is impossible for people to understand what a grind it is to just get up in the morning. It is these symptoms I'd most like to wave boodbye to from the rearview mirror.

Has anybody experienced depression on this med? I'm kind of blue today.

Katty

Hi and welcome! Here's to doing great on 'Ty'!

Just read the other day that data from the Affirm and Sentinel Tysabri trials indicated that 9% of Ty users develop antibodies to the drug. 3% were transient and went away while 6% remained high making the medication ineffective.

That is why they have to check for the antibodies.

Harry

I read that too, Harry:

"From PubMed, September 1, 2007:
Neurology. 2007 Aug 29

The incidence and significance of anti-natalizumab antibodies. Results from AFFIRM and SENTINEL

Calabresi PA, Giovannoni G, Confavreux C, Galetta SL, Havrdova E, Hutchinson M, Kappos L, Miller DH, O'connor PW, Phillips JT, Polman CH, Radue EW, Rudick RA, Stuart WH, Lublin FD, Wajgt A, Weinstock-Guttman B, Wynn DR, Lynn F, Panzara MA; for the AFFIRM and SENTINEL Investigators.

From the Johns Hopkins Multiple Sclerosis Center (P.A.C.), Baltimore, MD; Institute of Neurology (G.G., D.H.M.), London, UK; Hôpital Neurologique (C.C.), Lyon, France; University of Pennsylvania School of Medicine (S.L.G.), Philadelphia; Neurological Department (E.H.), General Teaching Hospital, Prague, Czech Republic; St Vincent’s University Hospital (M.H.), Dublin, Ireland; University Hospitals Basel (L.K., E.-W.R.), Switzerland ; St. Michael’s Hospital (P.W.O’C.), Toronto, Ontario, Canada; Texas Neurology (J.T.P.), Dallas; VU Medical Centre (C.H.P.), Amsterdam, the Netherlands; Mellon Center for Multiple Sclerosis Treatment and Research (R.A.R.), Cleveland Clinic Foundation, OH; MS Center of Atlanta (W.H.S.), GA; Mt. Sinai School of Medicine (F.D.L.), New York; Silesian Medical University (A.W.), Katowice, Poland; Jacobs Neurological Institute (B.W.-G.), SUNY University at Buffalo, NY; Consultants in Neurology Multiple Sclerosis Center (D.R.W.), Northbrook, IL; and Biogen Idec, Inc. (F.L., M.A.P.), Cambridge, MA.

OBJECTIVE: To determine the incidence and clinical effects of antibodies that develop during treatment with natalizumab.

METHODS: In two randomized, double-blind, placebo-controlled studies (natalizumab safety and efficacy in relapsing remitting multiple sclerosis [MS, AFFIRM] and safety and efficacy of natalizumab in combination with interferon beta-1a [INFbeta1a] in patients with relapsing remitting MS [SENTINEL]) of patients with relapsing multiple sclerosis, blood samples were obtained at baseline and every 12 weeks to determine the presence of antibodies against natalizumab.

Antibodies to natalizumab were measured using an ELISA. Patients were categorized as "transiently positive" if they had detectable antibodies (>/=0.5 microg/mL) at a single time point or "persistently positive" if they had antibodies at two or more time points >/=6 weeks apart.

RESULTS: In the AFFIRM study, antibodies were detected in 57 of 625 (9%) of natalizumab-treated patients: Twenty (3%) were transiently positive and 37 (6%) were persistently positive. Persistently positive patients showed a loss of clinical efficacy as measured by disability progression(p </= 0.05), relapse rate (p = 0.009), and MRI (p </= 0.05) compared with antibody-negative patients. In transiently positive patients, full efficacy was achieved after approximately 6 months of treatment, the time when patients were becoming antibody negative.

The incidence of infusion-related adverse events was significantly higher in persistently positive patients.

Results of SENTINEL were similar to AFFIRM, except with regard to sustained disability progression; differences between persistently positive and antibody-negative patients were not statistically significant.

CONCLUSIONS: The incidence of persistent antibody positivity associated with natalizumab is 6%. Reduced clinical efficacy is apparent in persistently positive patients. Patients with a suboptimal clinical response or persistent infusion-related adverse events should be considered for antibody testing.

PMID: 17761550"

Cherie

My neuro had me tested after my three month infusion. I think I'll be tested again after the six month, and then I believe that's the last one I'll need.

Hi Katty and Pete! Good "meeting" you and glad to hear your experiences with "T" have been good so far!! Kind of weird, I tried this yesterday but my old webtv keyboard needed new batteries and wouldn't work......now today, my first try, my IN provider kicked off the connection. What's going on??? Is somebody trying to tell me something??? LOL!!

Anyway, welcome and please keep us posted on your progress. Good luck to the rest who have been brave enough to try it too!!

Take care! :)

PS: Thanks Cherie for the good info you always have to share with us......and Harry, you're just an awesome husband taking care of your wifey so well!

One Week
 

Hi All,

It's been a week since my Tysabri infusion. I am feeling a tremendous amount of hope. The numbness in two of my fingers is less dense today. I'm also less tired. I have been getting up at 6:30 AM without trouble and am able to get the kids off to school without wanting to lay down and sleep on the kitchen floor. The kids are doing better as a result. I still need crash time in the afternoon, but an hour does the trick.:)

I'm very suseptible to the placebo effect, so until I get sustained results for at least three weeks, I don't quite trust my good fortune. Still, it's bed time now, and one thing I can say with absolute glee--I don't have to take my Copaxone injection tonight!

Thanks for all of your warm welcomes. It's fun to share with you, which is the absolute first time I've connected the word fun to any aspect of this stinking, rotten and thouroughly inconvenient disease.

I'll update you again soon.

Katty

day ten
 

I am up and down. My fatigue was back, and then some, this weeked, but seems better today. I noticed a tiny bit of weakness in my left leg but not very bad.

I think my cognitive function is on the upswing.

All together, I feel slightly better than when I was taking nothing, and quite a bit better than when I was taking Copaxone. The biggest benefit I'm seeing at this point is the convenience of once a month treatment...and the boost of knowing I'm doing everything reasonable to maintain my current level of function.

I'll keep reporting back here, just in case there is someone out there considering this drug, who could benefit from my experience.

Katty

week 3
 

Hi all,

My kids had colds this week, which means that I got their colds. The interesting thing about this is that I got much sicker than they did. I've been double dog sick the last three days with congestion, coughing, sore chest. I don't usually get and stay sick this way.

I wonder if the tysabri is somehow compromising my imune system. Or if running full tilt with two sick kids in tow is compromising my imune system. Or if I was just the lucky winner of the really ugly virus jackpot.

Hmmm.

I am feeling better today.

Katty

Ahhh Katty, I'm so sorry you've been feeling under the weather. :( Don't you find that kid's germs are more potent than adults? Seems like when my kids were little and in school, whatever illnesses they brought home went right through the family. Hope you're up and about and feeling much better soon. Rest up as much as you can!

Tysabri DOES compromise certain parts of your immune system. It prevents certain immune cells from crossing the blood/brain barrier and going after the inflamed myelin.

During the trials, it was noted that some of the patients suffered higher levels of infections. Whether the Tysabri had anything to do with you suffering longer with the virus you caught from your kids is another question.

I would note the information and advise your doctor. Then there will be a record of it for future analysis.

Hope you are feeling better soon.

Harry

next injection, tommorow
 

Thank you Judy and Harry, for the sympathy and encouragement. I will mention the cold to my doctor, but over all am going to withold judgement for a while. I am feeling better and back at full tilt, (just a little slower full tilt.) Tomorrow is my second injection. I'll report back.

infusion #2
 

I brought my laptop and a couple of episods of House MD to my second infusion. I thought it appropriate to get treatment for MS while watching House cure everyone and their poodle--after he almost kills them.

The infusion went fine. No problems. I had a couple of rough days where I was tired and one day of depression, which mirrors my first infusion experience. Today I was able to wake up at 6:30 with less of the morning drags, and I felt reasonably cheerful all day.

I have more energy.

I am over my cold, but still have a cough, so inspite of its ferocity, it was within the acceptable, two week parameter for a cold. I'll let you know if anything else happens that leads me to believe my immune system is supressed.

Katty

infusion 3
 

I had my third infusion today. The gals at the oncology center had to stick me three times before they got a line to work. Other than that, there were no problems. I'm not spending the afternoon and evening sleeping, so I guess my body's adapting.

I've had some unsual facial pains this month. My left eye hurt and I have occasional sharp pains in my left ear, pain between my eyebrows and occasional dizziness. The doctor says I may have a blocked eustation tube--go figure, you mean it's possible to have something wrong that isn't related to MS?

I'm not running marathons but I am doing pretty well. Better than before I started Tysabri. If you were to meet me, you'd never know there was anything wrong. :)

Katty

yay, Katty...I hope it stays that way.:hug:

Katty
Good news, thanks for sharing with us. Enjoy the positives!

:hug:

Thanks. I played Monopoly with my girls tonight instead of crashing on the couch! This is a good day!

Katty

Gasp! The cost of Tysabri!
 

Hi,
:eek:
It's been a while since I last posted. I'm doing very well. Cognitively and physically improving. Energy level is pretty good.

I had a shock the other day. I received the first of the cost breakdowns that my insurance company gets from the hospital. For each treatment of Tysabri, the hospital is charging $13,000. yes, that's thirteen with three big o's on the end. That's almost $160,000 dollars a year yor me to get the treatment.

Thought you might need to know this. Im still gasping and coughing. Yes my insurance company is paying for it, but if I ever lose my insurance I'm going to be in huge trouble--even more so because of the potential for disease rebound on this drug. With MS you never know when you might not be able to work anymore--leading to loss of insurance--eading to loss of treatment--leading to loss of all gains and a three to five times rebound in the disease.

this cost factor is big. Check with your infusion provider before starting the drug. There is only one in my county.

Katty

Katty

I personally think your hospital/infusion center is way overcharging for your Tysabri infusions! It does NOT cost that much. If I were in your shoes, and I have been, I would ask your insurance company to do an audit. The cost is about half that...

I am glad you are feeling better. ;)

(I do have a lot of background regarding this issue!).

Katty,

I wasn't getting any benefit explanations from my insurance company so I went to accounting at my hospital and asked about the charges.

Fortunately for me, my hospital infusion center ( also the only game in my county) is eating what my ins. co. doesn't cover. I was appalled to hear that the charges were over 5 K per month. The accountant broke it down for me and the cost of the drug was around 2500.00 and the rest was for the infusion center.

Glad to hear things are going well with you!! Please keep us posted!

Hey RW --- Don't you think that $5k is more the norm than $13k? I know that through the research that I have done for the presentation that I have given, that $2500 is pretty much the cost across the board for the drug, but the additional $11k for the infusion???? Is she buying a wing for the hospital??? My goodness!!!!

I think it is WAY high. I believe she must be paying a nurse her yearly salary for doing infusions! Course if it was me, I would be gathering information and links and inundating the ins co with emails!

I do recall our lil Mary telling us that she had a rather high bill for her infusion that her insurance was paying too. But hers was for the big city Boston hospital.

Where are you located Katty?

These are ridiculous prices! My neuro's office charges about $500 for the infusion, my meds are from my specialty pharmacy. He said that after all the administrative costs of the infusions, it's really not even profitable for them to do it. :(

The cost!
 

Hi,

I called the insurance company and requested an audit. They were not interested. I called the hospital and was told that I was lucky there was anywhere to go for this. I was also told they charge $20 for an aspirin.

I live in Santa Cruz, California. The costs are high here, but I know from the Elan website that the drug cost is less than $2500. The hospital charges $12,000 for that. They tell me this is because they have to cover the costs of other stuff they do at the hospital. I think that stinks.

I know someone who had a baby recently. It was a normal delivery. The hospital charged them $30,000. For now I'm going to calm down and be happy the insurance is willing to pay this outrageous bill.

Maybe I can convince the Neurologist to start doing the infusions at his office.

Katty

Katty

It's not a matter of whether or not you can convince the neuro to infuse you at his office, he has to be TOUCH certified to infuse AT his office. There is a very detailed TOUCH protocol training and certification process that his office must go through in order to become an infusion center. And he has to have a TOUCH certified and trained RN on duty, not just someone in the office. That's why a lot of neuro's don't have infusion centers in their offices.

Biogen (not Elan) is trying to get a handle on these cost over runs because it is hurting the overall big picture for patients who really need this drug not getting it because some insurance companies (like mine) are refusing to put it on their formulary.

Don't misunderstand me, I am no long eligible for Tysabri because I am in a clinical trial for Tovaxin. I got tired of fighting my insurance company. I did testify to bring Ty back on the market and was on an FDA RiskMAP panel representing the MS Community discussing the PROs and CONs of the TOUCH protocol for Tysabri.

There are other areas of the country that are a lot more expensive than Santa Cruz and have only one or two patients being infused. As an example: here in Idaho, one place I know has only one patient that has a travelling infusion center and they pay no where near what you are paying. If your insurance company isn't interested in performing an audit...that would make me wonder why! Oh well. :confused:

As you said, you are lucky your insurance company is willing to pay these outrageous costs! I am also happy that Tysabri is working for you.

Keep us posted on your progress! I hope you continue to improve! ;)

Thanks for telling us the details. I guess when they say people with insurance pay for people with no insurance, they aren't kidding! Your insurance company is paying for you and someone else!

Either way? Happy to hear you are still on Tysabri and they ARE paying for it!!:)

ahh! Cost relief!
 

:D
I guess my insurance company decided to check into matters after all. I got my second insurance statement today and they are only allowing about $5000 of the costs. The rest the hospital will have to eat.

The Tysabri really works. Too bad it's so hard for some people to get. I actually select the health insurance for my company so I made sure they cover Ty. There is only one doctor in the area who is prescribing the drug.

CHERYL: Please tell us how the Tovaxin trial is going. I hope it's as good as it sounds. Why don't you open a Tovaxin thread and keep us posted?

Katty

I did, but no one seemed interested and it is probably back on page 100 by now! ;) I will post something later...gotta go build gingerbread houses with the neighbor's kids right now!

I am glad your insurance company did take an interest!!! Good for them! :D