Infusion #15 today
 

I had my 15th infusion today and it went well. :) My doctor came in to check on me just as the nurse was going to put the IV in. It caused her to hesitate because he was standing there watching her.

So he said, here, let me do it, I love to do these. He put the IV in perfectly on the first try! He was giving the nurse pointers all along, since he's been involved with MS treatments and infusions for decades. I think she may have been a bit embarrassed to have an impromptu mini-lesson.

The other nurses there have told me that newer nurses often cannot insert IV's easily because they either don't have to in hospital settings, or they don't have the opportunity to do it often enough in their training.

Anyway, we were out of there by 1:15, stopped for lunch and got home early. :)

Progressive multifocal leukoencephalopathy (PML) has reared it's ugly head again, this time with two people on Tysabri monotherapy.

Attached is the link to the in-depth discussion on NT, which others contemplating Tysabri may wish to consider:

http://neurotalk.psychcentral.com/thread51141.html

Cherie

While neither of the new PML cases were in Ireland it looks like there is some concern that it is not being properly monitored there. There are still unknowns with these 2 new cases -- maybe more info will come out in the next weeks about other countries in the EU and their protocol.

http://www.irishtimes.com/newspaper/...41.html?via=mr

Just thought I'd throw this out here..... :)

I'm sorry Natalie (and others), I really didn’t mean to stir up conversation about this event here, in the “Information and Check-in” thread. I was only meaning to post the link to conversation that had occurred/may still occur.

In response to your point though, we have the same concern in Canada. It’s probably true of many countries with a “universal health care” system, as access to diagnostic testing is limited and prioritized. That might seem like all the more reason to NOT approve the drug in our countries to begin with . . . however, all that REALLY means is that they might not be able to catch (diagnostically) the PML in timely fashion to save people from death. It isn’t going to change the fact that people may get PML (in any of our countries) though.

As Cheryl pointed out in her last posting (on the above thread):

According to the conference call Biogen held, the neurologists in these two cases were extremely responsive to the patient changes, even though the testing showed a false negative reading. That attention to patient care is probably what saved these people (at least momentarily).

At the end of the day though . . . I guess it’s kinda’ like saying a person can’t be a “little bit pregnant”. By the time they suspect PML in a person, whether diagnostically or through due diligence . . . the person HAS PML already. The only thing they can do is try to mitigate the damage by initiating testing, and then trusting their gut even if the tests show a false negative.

Cherie

Not meaning to stir the pot either, but this just popped up here on NeuroTalk in Health News Headlines.

"Patients with multiple sclerosis who are taking the drug Tysabri are not being properly monitored for serious side effects because of health service budgetary cutbacks, a leading neurologist has warned..."

http://www.topix.net/med/neurology/2...ed-says-expert

More information about these two cases can be found at Biogen's website by clicking on their SEC 8K report.

Have any of you spoken with your neurologist regarding Biogen's report of the two new cases of PML - and what was your doctor's response regarding continuation of Tysabri?

I don't know too much about universal health care systems and the quality of care. But, you are absolutely right. People still have a risk of PML. And that is something a patient needs to take into account before going on Ty. (weighing the risk v. the benefit in the face of the facts, or at least as close as you can get). A patient takes a calculated risk in deciding to go on the drug. The protocol is not designed to prevent you from getting PML. The only thing you can do is mitigate the effect of the risk if it manifests itself. It sounds like at least one of the doctors trusted his gut (and made the diagnosis based on the MRI and clinical signs) and did the plasma exchange on one of the cases very early -- this is the person who is stable, at home, and ambulatory. A protocol is better than NO protocol and I feel relatively confident in the ability of my MS Clinic to catch it early. But I thoroughly acknowledge there is still a risk of getting PML. And I guess you could say there is a risk that my clinic might not catch it early. But aren't there all kinds of risks in life? To each his own...some are more comfortable with risk than others. The nice thing is we have the choice.

I didn't speak with my neurologist but I spoke with the head research nurse at the clinic where they have 150 people on Tysabri. In fact, this clinic had one of the 3 initial PML cases in the early Tysabri trials--it was the guy who lived, albeit very disabled. She and the docs have been discussing it and will meet next week again. They don't intend to pull anyone off. I asked about the "12 suspected cases of PML" that were reported. She claimed the clinic had been in touch with the FDA and that in fact these cases were not PML. Doctors are just being hyper vigilant which can lead to over reporting. I can't say I know this to be true. It's reassuring to hear her say this but you can't know for sure. I imagine there is a lot of hearsay and misinformation floating around as well.

Maybe we should move this discussion back to the Tysabri link announcing the 2 new cases of PML that was started yesterday? It's good of Cherie to post the link to that thread here so people can have access to it. But I don't want to hijack this thread. What do you all think?

I had an appointment with my neurologist yesterday. She is continuing to rx Tysabri.

I'm scheduled to start my first Ty infusion next Friday.. I've known of the risk, however small, from the trials, and decided I could live with that since I haven't been on any DMD's for nearly a year. It concerns me that these cases start showing up after using the drug for an extended period of time ~ they really don't have any information on what happens after 2 or more years of use since the drug is so new..I still plan to start, but I'll keep watching for more information on what happened with the new confirmed cases.
Oh, and something I found slightly amusing (in a dark sort of way), I first heard of this through an artical in the Wall Street Journal, which was mostly talking about the big dip in Biogen's stock when this happened. Yep..As long as we have our priorities straight...:rolleyes:

Good luck with the first infusion Polar Express. :) I go for my second one a week from this Monday. For myself I've decided the risk is worth it at least for a year, maybe two (but I'm not going to tell you I'm completely worry free but I think I will be able to manage it). Hopefully in two years some of the oral medications will be just coming out on the market and we will have a better sense of long term Tysabri use and how many more PML cases there will be. Then I can decide what to do then. Cause the interferons and copaxone are out.

Polar, I just have to say: I LOVE YOUR FUNNY BUNNY SIGNATURE!! It really sums up how my life is going at the moment!!!

Sorry for the brief Hi-jack. It made me smile:):)

My MRI'S are back - Good News!
 

I had my MRI's done as a prereq. for another treatment last week. I have always felt I was still in the 1st attack and just have a ton of MS SX.

To my suprise they came back GREAT. All 3 mri's were the same - "no enhancement remaining" and "no new lesions". This is after just 5 infusions. I'm told I could not have got better news at this point. I even have a decrease in prominence on the brain/brain stem mri.

Needless to say, I will not be moving to another treatment unless I fail a test or something. I've got the liver coming up on 6th infusion. I always worry. But, everything looks great now.

Will not stop until they make me!!
 

I am scheduled for infusion #24... this coming Friday, and that is #24 since it's re-release, I had 3 infusions after approved before it was pulled from the market. I have QOL back and I am doing more and more each month. I would not change a thing at this point.

I look at it this way, all medications have side effects to varying degrees. At this point I honestly feel that there may be more of a chance of becoming disabled or dying on my drive into the infusion center :eek:.

~K

MySterious I see you this is your first post but you've been registered on NT for awhile. I don't know if I need to welcome you here but:welcome_sign:

Thanks for sharing your experience with Tysabri. Sounds like it is working out well for you.

Very sound approach you have there....
I'm not on DMT at the moment but if my situation was different (I'm in a holding pattern with no symptoms at present, knock on wood) I'd probably be thinking along the same lines as you. Interferons and Copaxone are out, I'm waiting for oral meds, but if push really came to shove I might consider Tysabri short term. Enough people have gone 'off' the med with no predictable, serious complications for me to consider it a safe enough - if temporary - lifeboat. Initially, I thought no way - and most times, still feel that way (I want more long term data) but this disease has a way of knocking ones' conventional wisdom right off the block.

Just A Quick Update:
 

There used to be a site called "MS Patients for Choice.org" that provided a list of Tysabri infusion centers, but when I try to get to it now, it seems to have changed domains.

Does anyone know where the Tysabri Infusion Center information is kept now?

Thanks, Cherie

Hmmm, Cherie -

I know that at some point, Tysabri did have it on their website - a location search - but I just tried to find it and I can't. They must've taken it down.

I think you'd have to call them to find out....when I first started, it was that way. Then a while ago, I noticed it on their site - but like I said, it was some time ago...

~Keri

If you call MSActiveSource and give them your zip code and your patient registration number, they will give you a list of TOUCH Certified Infusion Centers in your area, or so they say.

According to my source, a complete list of all TOUCH Certified Infusions centers across the country is not available as it is considered proprietary information. :confused:

Ok. :confused: :confused:

Thanks Cheryl.

Cherie

I was just on the official ty website, and it has a search option for infusion centers near you. There is a little red triangle in the middle of the page that says, find an infusion center near you.

I used it and found another place in my city that I didn't know about.

yes, go to www.tysabri.com and it is right on the home page.

Thanks 4boysmom & babs. :)

Cherie

Thanks, this is new. They have added this feature since they updated their website and actually added Tysabri information!

I had my second Tysabri infusion today. They were overbooked and one of their IV "pumps" died so I waited 90 mins. in the waiting room before I even got put in the chair for the infusion. Yikes. :eek:

No real problems whatsoever except for the delay. I had a slight headache for the first 15 mins. I do feel like a truck has run over me though! I'm incredibly drowsy and not sure how much longer I can stay up. It's only 7 pm.

I also met a woman who just had her 17th infusion. No relapses for her since she started the Ty. and she looked great.

Whoohoo!! I'm just thrilled there are no wretched side effects like I had with the interferons and copaxone! :)

PS: Polar, how did your first infusion go?

I got a call from my doctor's infusion nurse on Friday when I was at work. They changed my appt to a day when my doctor would be there, so I go on the 22nd instead of the 25th. He's going to discuss the news of the PML cases and whatever that might mean to me.

If he suggests I stop the Tysabri, my answer would be a resounding NO WAY. ;)

This is my week off and instead of going on vacation I'm doing jobs around the house. Today and tomorrow my task is scraping wallpaper borders. :( I will NEVER AGAIN put up wallpaper. :rolleyes: Anyway, the point is, I have the energy to do this and to repaint after I finish all the prep. I'm painting all three bathrooms and the entryway. Then DH is going to rent a sod cutter so I can redo and add to my flower and shrub gardens outside.

I feel better than I have in five years, at least! I wouldn't have attempted this in the last several years.

On 8/22 I get infusion #16. My sister asked me if I would stop because of the PML cases, and I told her no way! She said, Oh, that's good! :D

Chris blood tests came back negative for Ty antibodies so I think that is a sign that Ty is what is right for him.

He goes for #10 on 8/23 - I pray after #12 and more MRI"s that this will finally stop his progression and he won't have any new lesions.

That's great news! I'll keep you and your son in my prayers that Tysabri will do its magic. You're a great Mom btw. :) :hug:

I am glad that things are working out for everyone.

-Vic

#17 down
 

Had # 17 yesterday. The usual, no problems, no concerns.

Still had the pinpoint itching with no rash or any other reaction, despite the 25 mg of diphenhydramine (benadryl). We are now leaning towards it being a superficial reaction to the cleaner used to disinfect the chair or something. I am determined to get to the bottom of it, so next infusion, it's long pants and long sleeves!

Still haven't added the baclofen and tizanidine back into daily meds. I've had one or two doses of each since 7/22, during the great salmonella smackdown. Minimal doses of provigil added back p.r.n with the blessing of the doc, but NOWHERE near the dose I was taking! I'm going to try to stay off all that I can, just to get a better assessment of where I am at now, and add back as needed.

Hope everyone is doing well!:grouphug:

tysabrai
 

I got 11 IV tvsabrai infusions. Yes sometime I felt I needed it sooner than the 4 weeks. I neve got any negative or bad side effects. I never recieved benadryl or tylenol before or during or after infusion. I was on AVonex for 10 years and IV IG for 4 years. don't know why but my Dr. and I changed o tysabrai on Sept. 2007. then I got an ear infection last month July 08 do they wouldn't do the IV tysabrai, the the 2 cases of PML disease happen in Europe. and it scared my husband and I to death so we went to my Dr. and we all decided to quit and scince I had gone weeks no tysabrai we will start my AVonex injection ASAP. I am reallyl scared because right now I am on nothing. I don't know if the tysabrai was working buy my MRI showed no new lessions this year. I need to keep a better track of my health problems etc. pain and decide if I should go back on tysabrai??:mad::confused:

tysabrai
 

I just wanted to send this info that i recieved from tysbrai. I think I will listen to the conference calls for more info.
Thanks and best wishes to eveyone on Tysabri i got chicken and quit after 11 months! oh well!:( Stephanie



"Greetings,

We are pleased to inform you that TYSABRI is celebrating a 2-year milestone.

TYSABRI continues to give many patients with relapsing forms of MS the strength to reach their high hopes.

Please join us for one of the following teleconferences to hear from patients living with MS:




The panelists will be participating in an open dialogue about how MS has affected their lives and the difference TYSABRI has made for them.

To participate, call 1-866-644-8540 at least 10 minutes before the start of the teleconference. When asked for a code, please say "Peer to Peer Teleconference."

To learn more about upcoming programs, please visit TYSABRI.co or call Patient Services at 1-800-456-2255.

Talk to your doctor about whether TYSABRI is right for you.






Indication

TYSABRI is a prescription medicine approved for patients with relapsing forms of MS to slow the worsening of disability that is common in patients with MS and to decrease the number of flare-ups (relapses). Because TYSABRI increases the risk of progressive multifocal leukoencephalopathy (PML), TYSABRI is generally recommended for patients who have had an inadequate response to, or are unable to tolerate, alternate MS therapies. TYSABRI does not cure MS and has not been studied longer than two years or in patients with chronic progressive MS.

Important Safety Information

TYSABRI increases your chance of getting a rare brain infection that usually causes death or severe disability. This infection is called progressive multifocal leukoencephalopathy (PML). PML usually happens in people with weakened immune systems. No one can predict who will get PML. Your chances may be higher if you are also being treated with medicines that weaken your immune system, including other MS treatments. If you use TYSABRI alone to treat your MS, it is not known if your chance of getting PML will be lower. Nor is it known if the length of time on treatment with TYSABRI increases your chance of getting PML. There is no known treatment, prevention, or cure for PML. If you take TYSABRI, it is important to call your doctor right away if you have any new or worsening medical problems (such as a new or sudden change in your thinking, eyesight, balance, or strength or other problems) that have lasted over several days. Tell all of your doctors that you are getting treatment with TYSABRI.

Because of the chance for PML, TYSABRI is generally recommended for patients that have not been helped enough by, or cannot tolerate other treatments for MS. TYSABRI is available only through the TOUCH™ Prescribing Program, which is a restricted distribution program. Only prescribers, patients, and infusion centers enrolled in the TOUCH Prescribing Program can prescribe, receive, and infuse TYSABRI. Before you take TYSABRI, you and your doctor must enroll in the TOUCH Prescribing Program and agree to the program requirements. Plan to see your doctor 3 months after the first infusion, 6 months after the first infusion, and at least as frequently as 6 months thereafter. TYSABRI does not cure MS and has not been studied longer than two years or in patients with chronic progressive MS. TYSABRI is not approved for use in patients under age 18.

You should not receive TYSABRI if you have PML or are allergic to TYSABRI or any of its ingredients.

TYSABRI is not recommended if you have a medical condition that can weaken your immune system, such as HIV infection or AIDS, leukemia or lymphoma, organ transplant, or others, or if you are taking medicines that weaken your immune system. Talk with your doctor about all of the medicines you take or have taken. TYSABRI may increase your chance of getting an unusual or serious infection. You should not take TYSABRI if you are pregnant, trying to become pregnant, or nursing.

TYSABRI may cause liver damage. Symptoms of liver damage can include yellowing of the skin and eyes (jaundice), unusual darkening of the urine, nausea, feeling tired or weak, or vomiting. Blood tests can be done to check for liver damage. Call your doctor right away if you experience any symptoms of liver damage.

Other serious side effects with TYSABRI include allergic reactions (e.g., hives, itching, trouble breathing, chest pain, dizziness, wheezing, chills, rash, nausea, flushing of skin, low blood pressure), including serious allergic reactions (e.g., anaphylaxis) and infections. Serious allergic reactions usually happen within 2 hours of the start of the infusion, but can happen any time after receiving TYSABRI. Tell your doctor or nurse right away if you have any symptom of an allergic reaction. You may need treatment if you are having an allergic reaction. TYSABRI may increase your chance of getting an unusual or serious infection, because it can affect your immune system.

Common side effects include headache, urinary tract infection, lung infection, pain in your arms and legs, vaginitis, stomach area pain, feeling tired, joint pain, depression, diarrhea, and rash. Tell your doctor about any side effect that bothers you or does not go away.

Please see full Prescribing Information, including Boxed Warning and Patient Medication Guide. "

That's great RW! :hug: I should have added, I'm off Baclofen and Zoloft. I have Provigil but don't need it very often (maybe once every week). I also dropped one BP med, probably because I'm so physically active now. This is amazing to me. I never expected to get to this level of improvement.

just feel like sharing good news
 

Like Wiz I am feeling highly energetic and it is so unexpected. I've only had 2 Ty. infusions now. The first one made me drowsy for 1 week +. The second one that I got a week ago made me feel like super girl!! :yahoo: I seem to need less sleep (only 7-8 hours now) and am staying up late at night, I have energy to go out and visit with friends and run errands, I had to move offices today and it was a breeze even though I had to unload 20 boxes of books, and I've been going to the gym now for 2 weeks (Prior to this I only went 2x in 2 years because of mono and then the MS diagnosis and the endless nasty drug side effects). As I told my DH, I feel like I have super human powers now. He said no -- this is just how healthy people feel every day and that I am just feeling back to the normal way I was before I got sick. I guess I didn't realize that I may have been suffering from MS fatigue until it seems to have recently lifted. I thought the only symptom I've ever had is the optic neuritis and one very brief bout of dizziness. For the longest time I just thought the fatigue was lingering mono damage. But maybe it was all MS fatigue and the Tysabri is wiping it out?! Anyhow, I can't believe how GREAT I feel. I am just plain shocked. It is certainly making me feel as if the risk I am taking is worth it. :)

First Tysabri Infusion scheduled
 

This will show as my first post, but I used to be registered as "Teresa" for many years. Now I can't sign in with that account.

I have been on Beta Seron for many years, but neuro and I decided to start Tysabri. I am a bit nervous with all the info about it, but no differently than anything else I've ever done with MS!

I have had MS for 20+ years, walk with two forearm crutches and use a wheelchair for long distances. I hope this will stave off more progression... I am encouraged by what you all have posted.

I will check in with my experiences and follow what you all share. Thanks!

~Teresa