24 infusions?

[Stacer]

Hi all. I'm just trying to get opinions/thoughts of those on tysabri.
I had #21 today. I'm debating how much longer to stay on it. My MRI hasn't shown any change since I've been on it, although I did have 1 relapse while I've been on it. Right now, I'm more afraid to stop taking it than I am to be on it.

Questions:
How many infusions have you had?
How many relapses (if any)?
How long do you plan on staying on it?

Thanks for your input!

[REG53]

Hello Stacer,

I just had #44 I have not had any relapses and right now I plan to stay on it. Maybe someday something better will come along.

Oh, also my MRI's have not changed.

[shalimar]

I have had 32 infusions and my neuro wants me off it and to start Gilenya. Today I went for an MRI. I will most likely be off Ty for at least 3-6 months before starting Gilenya. I am really afraid to to without any disease modifying therapy for that length of time, but also afraid of PML.

[LL60]

I have had 17 infusions.
Yes, I plan to stay on it.
I am more afraid of MS than I am of PML.
Guess that is the question you have to ask yourself.

I feel that as time passes they will come to understand PML more and have better treatments for it. Tysabri is not the only drug or the only thing that causes PML. I think it is bringing attention to it, and that is a good thing.

[fishead]

Have had ~30 infusions. I did take a hiatus with it, for 2 months. My Neuro was very mad, but after having been on it 24 months, I decided MYSELF that it would be in my best health-interest. AGAIN, this was MY personal decision.

[cocogirl]

I just finished #24. I did have to go off because of multiple surgical procedures after the 21st infusion. My MRI at 24 still showed no new enhancing lesions. I am glad that I got back on but am curious about the oral meds coming on the market now. I will speak to neuro at my #27 infusion.

[Bodiedogger]

48 and counting

DX 1998 Avonex then Tysabri

Including the original two doses I got in 2005 before it was taken off the market, I have I believe 48 monthly doses. I have been recently told that I was JCV antibody positive.

I am relapse free since returning to tysabri therapy and my MRIs show no active lesions.

The possible side effects of gilenya suggest that it too is a serious immunosuppressent. I have not had a great deal of trouble with infections on tysabri. Intuitively that would lead me to believe that my immune system in not overly suppressed. Cognitive distortion?

I am leaning toward the idea that I will continue with tysabri until something better/safer comes out.

[0485c10]

I've had 26 infusions, 27 is next week. I had 1 relapse after 12 infusions. I have no plans to stay on tysabri or get off of Tysabri, one day at a time.

The relapse I had after 12 infusions, actually calms me somewhat, because it tells me that Tysabri hasn't been completely successful at stopping my immune system--a part of my "wiley" immune system is getting around the Tysabri & that might be a good thing?

I didn't have the JCV antibody test but I am waiting for the results of the trial to be published. I have had NO side affects with Tysabri not even a UTI. I would be waiting for side affect to make a decision to stop. The way that medicare covers infusion meds is a HUGE reason to stay on Tysabri....I would be waiting for a difference in MS med coverage I would be waiting for a huge multi-symptom relapse or a MRI that indicated tysabri was not effective in me any more--the single relapse I had after 12 infusion was a single symptom,ON..I would be waiting for a bad MRI or MS decline. I would be waiting for some signs of PML

Before I make a decision...right now, I have is no plans either way until I see something I'm waiting for to tell me to change. then I will think about it more closely.

[lindaincolorado]

hey Stacer, I've had 50 infusions, no relapses and I plan/hope to be on Ty till something better is available

[unscrambled]

Hi, I'm wrestling with the same thing. I had #22, and am going in to my neuro in January (after #24) to talk about treatment options.

I've had no MRI change and no relapses since I started. Clearing up of some symptoms. Generally living a normal life (well, if you call being an MD/PhD student a normal life, which it ain't). In conclusion, this has been a great drug for me, minus the wrestling match of getting insurance to pay for it.

The next drug is looking like Gilenya (and my neuro is enthusiastic about it, he's also the lead author on the study of Gilenya--we're going to have a serious talk about sphingosine phosphate receptors and skin disease, lol).

Clearly, lots of us are considering this. Maybe I'm going to start another thread.