So a question for those of you on Ty. Anyone have follow-up MRIs that showed more lesions?

My DH would just like to have a baseline to go from. The neuro wouldn't give him a definite answer for the question is two lesions too many? He prefaced it by saying that he realizes any lesion is too many.

But he wanted to know do people on Ty have on average, no lesions, 2 or less lesions, or more than that typically after being on it for a year.

I was only on it for 10 months, so I realize the 2 lesions could have come in the transition phase, and I'm waiting for my NABs test.

But it would help my DH to know if others have had more than 2, or if I'm just special!!

I had infusion #8 this morning (after having to wait 2 additional weeks since I had a cold with cough and fever). I was worried that going 6 weeks was too long but it did not seem to matter.

My usual time is 2 pm but today I had to arrive at 8 am. Since I'm a night owl that was painful! I fell asleep for almost all of it. I then went and ran some errands, came home, lay down for a nap at 12:30 and fell asleep until 6:30!!! I'm awake now and feel great. No residual side effects like after some of the other infusions.

This really would be the most absolute perfect drug if there was no PML risk. But even so, I'm willing to take the risk. I have quality of life, I can do my job and function, I don't have to bother with shots, I don't feel sick from the meds, MS doesn't dominate my life because of the Ty., and my 6th month MRI showed nothing had changed.

4boysmom --- I haven't been on it for a year so can't answer your question. Good luck with everything.

4boysmom,

I've had a couple of MRI's and both have been clear. I don't tend to get a lot of brain lesions though. I hope that helps!

Natalie,

I agree with your viewpoints regarding Tysabri.

I get my next infusion on Wednesday morning, #23 I think.

Hi Wiz,

Out of curiousity, have you ever had a MRI of your spine? Thanks.

Harry

Hi Harry,

No MRI of the spine, but there's no need. My walking and strength have improved. I still have lingering old symptoms but not as bad. I think the Tysabri is doing a good job for me.

I hope you're doing ok. You should check in with us outside of the Tysabri posts. Let us know how things are going for you.

I had an MRI during the month before I started, one at 6 months and one at 18 months.

The first showed "numerous lesions, many enhancing". I did a course of oral steroids in the month previous to starting Tysabri because of that MRI. (orals because I was away for three weeks before my infusion and had to be able to take the steroids while away, I think it was a total of 3600 mg in three days)

MRI at 6 months showed no new lesions, no enhancing lesions and a sizable reduction in the size of several lesions and some lesions resolved as in gone.

MRI at 18 months showed stability, no new lesions, no enhancing lesions and further reduction in size of large lesions.

I should be due for another one pretty soon here since I am up for # 24. So far, so good.

Glad to hear it all went well Natalie, even if it WAS at an ungodly hour of the day! (I work nights so I know just how you felt!)
I also agree with what you said about Tysabri. It has allowed me a quality of life that I didn't have before and wouldn't have now, and at this point the only downside is the PML risk, but I don't worry about it. I'm too busy living life!

Yes my Tysabri Twin! It is # 23!
( Wiz and I started within a week or two of each other! She's just a lil behind!)

Hi again Harry,

I just re-read your post. I've had MRI's of the cervical spine in the past (three times, after relapses) because my legs and mobility and some other things warranted a check. There was a small lesion on the cervical spine and some narrowing too as the neuro pointed out to me a few years back. All of my bladder symptoms have pretty much disappeared since starting Tysabri as well. My main issue now is fatigue but I'm learning to manage that reasonably well.

Wouldn't it just be hilarious if we lived close by and we could infuse together? We'd be laughing so much they'd never get the needle in place.

But seriously... I did some major gardening last summer and that just thrills me to no end. I'm really anticipating getting out in the dirt starting about mid-March. I'm putting in a row of asparagus for starters.

Here are the updated graphs of my physical condition after being off of Tysabri for a few months. Note that I have not started Rebif yet because a "hidden" cost has arisen, and it is as high as the Tysabri cost issue. Alas, nothing is free unless you are already destitute according to the pharmacy.

It is time to just press onward and see what can be done with the assistance programs the I listed in another thread.

At least I have a pulse and I am still able to collect data!

LOL

-Vic

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Hi Wiz,

The reason I asked was because after having the disease for some 35 years, Marg had little if any brain lesion activity. Yet her condition really slipped in the last 3 years of her life. An autopsy revealed a huge amount of spinal cord lesion activity yet they never scanned her spine...ever!

BTW, I am doing very well these days...have met a wonderful new lady friend and enjoying life again. Take care.

Harry