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