Endure, re: drug study

[Numbers]

Endure,

I want to compare some notes with you on that drug study.

Numbers

[endure]

Hi Numbers, thanks for your patience, I don't pop in here very often so glad I saw this today!

[Numbers]

Hi Numbers, thanks for your patience, I don't pop in here very often so glad I saw this today!

Endure, thanks for checking. Hope you're doing well...I wanted to compare notes with you and ask if you've seen the recent release about our drug not being any more effective than other MS drugs in preventing exacerbations (there is a posting somewhere in this forum)? But the drug has shown to be better at slowing MS's progression than other drugs.

The failure to reduce exacerbations really isn't a big deal for me; I haven't had an exacerbation in years and years, just that slow, steady progression. That's the big thing for me.

About comparing notes:
I can not remember your status with the study; have you completed it? Do you know if you received the drug? I just had my second infusion and the coordinator doing the infusion let something slip out. She said that people who have been receiving the drug report some pain at the time of the infusion. She told me this when I complained about the pain this time as well as the first infusion. The infusion sites were near the elbow and from there to the hand was a somewhat dull ache while the infusion was administered and for a few more minutes longer (after the completion of the infusion). This kinda got me to wondering that maybe, just maybe, I'm receiving the drug. Since you are the only person that I know in the study, I thought I'd ask you if you had any pain associated with the infusions.

That crazy math test is still maddening and I'm convinced that I'm getting worse at it. And, of course, I really can't tell the study people of any improved changes I've experienced--I don't know if there have been any that are measurable. My endocrinologist has been adding some drugs, so I'm not so sure if any changes would be as result of those new drugs.

Oh, I hope you don't mind, I want to be able to communicate with you outside the forum. My electronic address is numbers@me.com. E-mail me if you're willing.

Numbers

[endure]

Hi numbers the study you were referring to was on RRMS not SPMS so I don't know if the outcomes would be the same. Normally people in SPMS don't have exaserbations so much as a slow or steady progression, so don't worry until you hear results from secondary progressive studies that we are in.

Yes I have completed my 2 year mark in the trial and am now on an extention. I never found out if I was on placebo or the actual drug during the study yet. But now I am on the real drug in this extended phase.

I too sometimes had pain (severe burning) at the injection site and figured that I may be on drug as well. I found sometimes I didn't have the burning when they had the IV in a good and deep vein. I do know that I have now had two doses of the actual drug and it is exactly the same as before re the burning pain, so I do think I was on drug in the study.

I still get that pasat test and I too can't stand it but now in the extended phase I only have to do the slow version, good thing as I am hopeless on the faster one!

I will email you so that you have my email addy and feel free to email me anytime...thanks susan

[Numbers]

...the study you were referring to was on RRMS not SPMS so I don't know if the outcomes would be the same.

Yep, I see that I kinda jumped over that little fact<g>