Tysabri is NOT a turkey!

Tysabri continues to show it's GOOD side--it is the Best Medicine for ME! I've had MS for at least 30 years and have tried MANY medicines. I've been taking Tysabri for 1 and 1/2yrs. now, and there's always a nice surprise after I get my monthly infusion. Early this week I drove 2 hours to Phoenix, got my shot, came back home to see my brother installing cabinets for me in the laundry room! What a nice surprise! The other surprise I got was my spastic bladder calmed down & I was able to travel and enjoy visitors & good food without having bathroom emergencies or accidents. Tysabri is doing it's thing--no turkeys here!

Tremors be GONE!

I just want to send out a positive signal I got that Tysabri is doing something GOOD. I recall my handwriting getting really bad in 1992. I could no longer write, just print letters slowly as I held my tremoring right hand with the other. It was awful as I was still working & needed my handwriting. Over the years I had to give up many things, like not writing checks. It also meant not writing personal cards & letters to people I loved. I missed my non-tremor hands so much! When I first started Tysabri a year ago, my handwriting improved to the point that I could address my X-mas cards & even print short notes! The tremors had stopped! Wow, that was the best present I got for X-mas! But it didn't last long. And NOW, since I've reached my one-year-mark with Tysabri, my handwriting is coming back again! What a blessing! I'm happy with any improvement no matter how small, and of course I want more & more!

Count the UPs not the DOWNs

First of all, today is Sept. 11th and I need to say this:
God Bless all those affected so deeply & personally by the 9-11 tragedy.
Today is a special day of Remembrance & my thoughts & prayers are with you.

On another note, the purpose of my blog is Tysabri, so here's the latest: I've been on Tysabri a year. With all the positive remarks I've read from users, I thought I'd be experiencing more "miracle improvements" by now. As I wait, there are small miracles I'm grateful for: Tysabri is the EASIEST drug I've ever used for MS (I won't say "my MS" because I don't claim ownership; MS is an Outside Invader). Why is it so easy? 1. My health insurance pays for it, 2. it is only a once a month infusion, and 3. I don't feel any negative side effects. Plus, when I realize that I've had MS for 30 years, it's gonna take some time for any medicine to put the brakes on the "runaway criminal" that's on the loose in my body! So there! Hope is eternal! P.S. I had 10 great days where I felt on the road to recovery! A "fog" had lifted and I was interested in the same Un-Sick things that Un-Sick people are! Hope it returns SOON & stays with me longer!

Push Tysabri to it's MAX-!! And when all else FAILS--

I HAVE FINISHED MY EXPERIMENTATION and HAVE FINALLY ARRIVED at the COMFORTABLE RESPITE of letting the SOLUMEDROL kick in and do its work to REDUCE INFLAMMATION. I have been waiting for 2 months to go on the traditional MS Replapse routine of 3 days of 1,000mg of Solumedrol/each day, then taper of on prednisone pills for 10 days. When all else FAILS and you keep getting worse, this is the BEST thing to TRY! It works for ME! I have been on Tysabri for a year now, but the progression of my MS is still going on, tho maybe not as fast. This is the 2nd replapse I've had while on Tysabri(Relapse, of course, means NEW or recurring symptoms for more than 24hrs.) I waited for 2 months before treating this Relapse, because I was in the middle of some experiments: I revised my P.T. exercises in May, as I had been doing the same ones for 3 years & my abilities have changed. Also, I tried a chiropractic treatment to see if it would help any MS symptoms, mainly my ability to stand/walk. After 5 treatments, the doc & I decided NO. The 3rd & last experiment was a couple epidurals to my lower back. I have no disabling pain, but it could help MOBILITY. The epidurals made me "loose as a goose" and it became HARDER, not easier, for me to stand. So those 3 experiments are done & I'm off to investigate another course of action as I wait for Tysabri to show something. Hope this info. is of some use to those afflicted with this bothersome "monkey on our backs". Now I need to rest & let my Adrenals recover & kick back in. Potassium, Calcium & D will help (but try to avoid salt)! Eternal Energy to all!

The Touch of Tysabri

Is IT helping me or am I just in remission? I can't tell, so I will keep on taking it. After all, I've had MS much longer than I've been on this new drug. The Touch of Tysabri is different for all people who try it. But the main suggestion is to Try It and don't be afraid!

Keep On Keepin' On!

I just got Tysabri #13, a good way to close out the month! I'd say thirteen is a Good Luck number for me. Maybe I can't stand up and shout about it, but it sure is the best for me & the MS Monster! I'll kick it's Can yet! Just a once-a-month infusion for an hour and I'm good to go. No side effects either. I'm going to Keep On Keepin' On...take a walk on the Wild Side and try it--it's a Keeper!

You can WIN with Tysabri

As you can see, I'm a hyper-critical blogger. Everything has to be Perfect to make me happy. Well, that's one of my faults. I don't want to discourage anyone from trying Tysabri. It's the Best Thing Yet for anyone that's bothered by MS. Even if you are NOT bothered by MS, there is still damage going on. I have had NO side effects with Tysabri. I've been on Tysabri almost one year now. My insurance (Medicare plus a Supplemental) is paying & it hasn't cost me $$$. That's a Big Success for me! Don't get me wrong, just 'cuz I'm on Medicare, doesn't mean I'm a Senior--I'm in my early 50's. I'm sorry to be out of the work world on disability. I miss the social interactions, but the freedoms I enjoy every morning I wake up are such a blessing! I may not be able to jog around my neighborhood, but I have exercises to do every day to keep me as strong as can be. I can still walk with the aid of a walker, but in my dreams I am as normal as can be! I'm suddenly inspired by a song by Kansas: "Carry on my wayward son, there'll be peace when you are done..." Good times to All!

Tysabri Blogs Itself

Hey out there--what's the Newest? I found out that while on Tysabri, you may develop "Persistently Positive Antibodies". In this case, Tysabri will stop working for you. These "antibodies are proteins made by the body to help fight against foreign invaders" -- your body thinks Tysabri is a Foreign Invader (like bacteria & viruses). This info. is NOT in the Patient Medication Guide, that you get before every monthly infusion. This info. is in a booklet called "Getting Started with Tysabri" that Biogen mailed to me, not knowing I've already been on Tysabri for many months. Why doesn't Biogen include this info. in the Patient Medication Guide, which has been the SAME since I started receiving it almost a year ago-? Oh, well, I guess you can call it one more of the persistent OVERSIGHTS that Biogen is guilty of.

Live Earth Participation

Hey People, it's 07/07/07!!! I'm One World-oriented and watching Live Earth videos from Japan, China, Germany, Australia, South Africa, Brazil, the UK, Washington D.C. & New York. How Cool is That??!! I'm a "forever environmentalist". I have No kids, my partner & I only have/use one vehicle and we do Not use a dishwasher. I only take One shower/week--no I don't Stink! I only water the yard every 2 weeks (by drip at night, no grass here!). I use the washer & dryer as little as I can. I'm replacing the bulbs in my house with CFLS as the existing bulbs burn out. Now I get to pat myself on the back & go back to watching all the concerts! Wee! and Yaayy!!

On a ROLL

Hey Desperate Housebounds! Guess what my 4th of July fireworks are this year? I'm getting Tysabri #12! Wee! But there will be no ANNUAL REVIEW at that time. It's a chronological thing, not the # of Tysabri infusions. Go figure! I wonder how many meetings it took for Tysabri Headquarters to decide that? Be aware that this Annual Review is required for continuing Tysabri infusions. Kinda sounds like "Mother may I?"

Still Alive & WELL?

I survived my epidural, but no big shakes from that. Just 80 mg of Depomedrol, a little bit of THIS to make me relaxed & sleepy like Dwarf Dopey. A little bit of THAT to prevent infection, as I'm on Tysabri & my immune system is suppressed (oh really?). The best thing about this ordeal was the soda I got while "recovering". I can try another epidural halfway between my next 2 Tysabri infusions (don't want to confuse myself). Ha! Is this called "self-medicating"-? I don't know if my 30-year-old back injury will "wake up and smell the roses", i.e. behave like a normal back & hold me up straight. If not, then it may just be the MS. Huh--what a discovery! It's about time for discoveries! Are you listening TYSABRI? Don't hold out on me NOW!

Continuing Coverage

Don't touch that dial(computer key)! Or your Post will Vanish! Whew! Here today, gone Tysabri! Progress in the midst of Tysabri = I can make it to the bathroom without having an accident! Big Deal! That's how I'm SUPPOSED to function, am I due to thank Tysabri for that? Huh! Where's the SIGNIFICANT progress? Am I supposed to be grateful for breadcrumbs when the medicine is costing me an ARM and a LEG? Huh again! You can't see me turning my nose up and hobbling away. Biogen/Elan is making a MINT on me! Do you think they would send even a HINT of THANKS for my support? Huh! No free meals with them!

Epidurals, Here I Come!

Hey! I'm still alive after that epidural! 80 mg of Depomedrol, plus a little something to relax me (made me like Dwarf Dopey, and a little something to help prevent infection (since I'm on Tysabri my immune system is being suppressed). I'm in heaven! I'm standing up straight for more than a minute! I'm brushing my teeth & putting on make-up without having to sit down! OK, now, hold you horses -- this result isn't happening Yet, but this is the Anticipated Outcome! Keep your fingers crossed for me please

DID ANYONE GET THE 6th MONTH TYSABRI REVIEW YET? The first question on the form(to the doctor) = Is the patient still ALIVE? My doc & I got a laugh out of that! Whew!

Posting till the Cows Come Home

I guess I should make some more "posts" instead of commenting to the comments. Not used to this blog stuff. I'm impatience incorporated. I don't have to wait an hour after my infusion anymore. I don't have to patiently sit while I'm asked the same questions before I can get my infusion. I guess the same info. is asked of me informally now (don't remember the questions). I had to coordinate the infusion nurse with my neuro. after I had Prednisolone IV for a flare-up; otherwise I wouldn't have gotten my Tysabri. See? You have to BE well to GET well! Good luck to all those out there in Tysabri Land! There's nothing to be afraid of after you passs the 3rd month and are over the risk of an allergic reaction.

Blogger: Tysabri - Post a Comment

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Help Me! Help Me! I'm on Tysabri!

Welcome...your call may be monitored to insure you receive the highest quality of service. Please listen carefully to the menu options: Press 1 to receive full prescribing info. This will take 10 min. & you won't end up knowing anything more than you already know. Press 2 to hear the Black Box warning. This scares the hell out of you. Press 3 to talk to a live body, no matter what their title is, they are just an office clerk, who will put you on hold, then return in a couple minutes, saying they CANNOT HELP YOU & you should ask your doctor. (Been there, done that.) My doctor has a similar complaint when he calls. Where is the REAL Help Line for this medicine? I am out alone in the world of Tysabri. Help!