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 is great news, Dedra!

-Vic

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.

I am glad that things are working out for everyone.

-Vic

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!

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??

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! 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.

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!! 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.

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