Hi Stacer,

It was almost a year for me before I knew for sure I was feeling better. I actually felt a lot more tired much of the time for the first several months. It's been a very gradual change for me though.

Hi Stacer,

It took a few months before I thought I was seeing results. I was afraid to post about them until I had clinical proof.

My 6 month MRI confirmed no new lesions, no enhancing lesions and some large lesions smaller or gone.

My vision test showed no damage, vision back to pre-diagnosis levels, I had control of my eye again! ( previous to Tysabri I had dizziness, balance issues, double vision, and an eye that did what it wanted to when it wanted to.)

My fatigue was down to half of what it was .I went from 400 mg a day of Provigil to 200 or less.

Spasticity cut by 2/3rds. Went from 80 mg+ of Baclofen to 20-40 mg a day. Tizanidine cut to 4 mg at night from 8 mg.

Cognitively, I wasn't as tired, so my thinking was more clear. I could balance my checkbook again, read a newspaper or a book and actually get through a page without having to go back.

Best of all, I haven't had a relapse since I started Tysabri after going through one every three months or so before Tysabri.

It took a while, and the change was subtle, but there was improvement!

I'm still stiff, and I still have spasticity and fatigue, but it's nowhere near as bad as it was and I don't feel as if I have progressed any further. Each successive MRI has shown improvement.

Tysabri is designed to slow progression and reduce the number of relapses and in my case, that has happened. The rest is the gravy, the whipped cream on the pie, the cherry on the sundae!!

Thanks for your replies! I guess I'm looking for the gravy, the whipped cream on the pie, the cherry on the sundae. I'm trying to be patient. Like you all said, I'm just hoping to slow this progression. I'll keep you posted! Thanks again.

Hi Stacer, I found the gravy, whipped cream, cherry (whatever you'd like to call it) in 3-5 mths. I started noticing I wasn't leaning so much on the shower wall with my elbow (balance), that I could now do dishes (husband likes this)' could socialize longer and more and no longer dozing off in front of the tv Now all of these have held-even more so of each- I've had 33 infusions. A few months ago I noticed that the jumping of my right eye (nystamygus) -sp- is now not happening after first having the issue for a few years and my bladder may be a bit better.
Ty has also done for me what it claims to do
Best wishes,
Linda

It's been vewwy quietttt in here.

Hopefully it's because everyone is out enjoying spring weather!!

Lots of rain here.

I had infusion #11 today and it was so infuriating! I don't want to go into the whole long story but suffice it to say that 1) my infusion started one hour late 2) I was forced to sit on a tiny couch because they "overbooked" (???) and there was no room for me in an infusion chair 3) I spent almost 5 hours in the infusion clinic 4) the usual clueless and unhygienic nurse messed up my infusion. I lost it at the beginning with the nurse and my husband lost it at the end. I rarely raise my voice or lose it in public but I was mad!!!!

One example of many: the nurse put on rubber gloves before a patient's IV (normal, right) but then put his hands in his pockets to fish out keys to open a cabinet and went on to use the same gloves to work on someone's IV! He also forgot to start my saline flush after the slowed down 90 minute infusion. Then he remembered much later (but I wasn't sure what was going on...I kept asking questions and he was dismissive).

I don't trust this place anymore. I think I have to go somewhere else even though it will probably cost me much more. Just so everyone knows, I reported this clinic to Biogen months ago for not asking the 4 questions or following protocol. Biogen sent me a personal letter telling me the clinic had to go through TOUCH retraining again. But the MS infusion clinic still is ridiculously screwed up.

In addition, my neuro apparently wants to do a Tysabri antibody test again (I got the order today by paper) since I may have had some mild optic neuritis a few weeks ago...I think in conjunction with feeling somewhat crappy after the infusions it is probably a good idea. Of course I am speculating this is the reason why. But now I am extremely worried. I have to wait 2 weeks before I go in to get the blood drawn (not sure why the nurse told me this) and then of course 2 weeks to get the results.

It has been a long frustrating day.

Good news. Maybe getting mad yesterday worked. Out of the blue I get a call from a nurse at my clinic wanting to check in. He said my neuro heard that I was unhappy with my experience with the tysabri infusion because of overcrowding and they had an alternative. The general neurology dept. has it's own infusion clinic and they could move me there permanently. I know the infusion nurse who works there and she is awesome!!!!!!

It has been quiet in here for a while - and LL, (Love of my Life), and I haven't posted in a while because everything was going so smoothly with Tysabri. We began to take it for granted that this miracle drug was THE solution without any drawbacks.

Until infusion 18.

Having never experienced any major side effects other than some minor facial flushing after the first few infusions, LL had a major reaction 45 minutes into infusion 18 in early April. She went limp, had total body spasticity and was temporarily paralyzed. The Neuro was called into the infusion center, stabbed her with an Epi-pen and then escorted her to the ER at the hospital next door. We spent the night there.

LL's Neuro said that this was the strangest reaction he had ever seen. His practice runs one of the larger infusion centers in the country and it was fortunate that he was present when LL had the reaction.

Follow up consult with the Neuro revealed that she has NOT developed antibodies to Tysabri. Since we all had been so pleased with her amazing response with Tysabri, the Neuro suggested that we try it again with pre medication - and we did - for Infusion number 19.

LL took Benadryl an hour before that infusion. The infusion center nurses administered more Benadryl and a steroid immediately prior to infusion. All went well - with little reaction other than the facial flushing again and (worse than normal) fatigue afterwards.

Her adverse reaction at 18 scared the s**t out of us but we are thrilled that she can continue with TY. Despite this scare and, until we have a cure, we still swear by Tysabri.

JJ

Now that would have scared me off of it for good. I'm glad it went well with the next infusion and I hope it continues to do so. God bless her! And you too!

Yikes!

That would have gotten the attention of everyone involved in my infusion center, along with my neuro and ME!

I'm glad to hear that everything came out well, and that she is able to continue. I hope it continues to go well and that you both will keep us updated on any further adverse reactions so we can watch out for them ourselves.

It's good for all of us to remember that you can have an adverse reaction at any time, even when you have been on a drug for a long time. I still sit quietly and assess my body and it's reaction at each infusion and I don't think infusions will ever become a "matter of fact" thing with me. It took me too long to be where I am and I am always afraid that something will happen to change the excellent results I have had.

Tell LL we're pulling for her!!