Sb-509

vrt749 · 06-03-2009, 07:59 PM

Hello All
I was reading a thread from 5-22-09 and am unable to find it again. However I am seriously considering entering the SB-509 study it is ongoing in California and starting up in Baltimore. I was wondering if anyone knows anything about it, or any positive results? I know the discussion from May 5-22 was that is it a legitimate study, which it is, they even pay participants, not the other way around. One person stated that a friend had some positive results. Any info or thoughts, positive or negative would help. I am not to sure about being a guinea pig!

vrt749 · 06-03-2009, 08:04 PM

I just found the thread again, new to all of this, again any thoughts would be appreciated.

Al · 06-03-2009, 10:48 PM

Not a problem. Hopefully we have members with first hand knowledge.

AL.

gotanygrapes? · 07-06-2009, 03:12 PM

Has anyone heard of a clinical trial SB-509. My aunt has been accepted into a trail and I was just wondering if anyone else has done this or knows anything about it? Thanks!

Bill01 · 07-06-2009, 05:52 PM

I am being screened for the study at this time. Are there any out there who are in the study? I'd like to hear from you

BethU · 07-06-2009, 09:38 PM

Don't know anything about that particular test, but I participated in a different trial at UCLA last winter, and it was a positive experience.

In my case, the meds helped enormously (for emotional lability) and the neuro has a pharmacy making them up for me now, so I didn't have to do without when the trial ended. Plus $50 payment per visit. Plus, a lot of face time with the neuro on a more leisurely basis than my regular clinic appointments. Plus, even if I hadn't received a needed medication from it, I felt like I was contributing a little bit to advancing treatments for ALS.

pmbenb83 · 07-06-2009, 10:06 PM

I hadn't heard of that one. I checked it out online and it sounds like a lot of shots. My husband wouldn't be a candidate, because he does not have diabetes, which was on the list to be a candidate. If she decides to do it, I wish her luck!

Take care.
Pam B in Va

PS - We're in Stafford... just down 95 from you.

gotanygrapes? · 07-07-2009, 08:16 AM

It's nice to meet you Pam B. She goes at the end of this month to have it done. Your right it is a lot of shots. The trial that she's in, you don't have to be a diabetic. There were a lot of things though that she had to do to get to this point. I hope it works for her. Her ALS is moving really quick.

Bill01 · 07-09-2009, 11:35 AM

Still wondering and would like to hear from anyone else i

nvolved with the sb-509 phase two study.

nattyb · 07-09-2009, 12:00 PM

Johns Hopkins called to ask if I wanted to be in the SB509 study. You have to pass certain critera to be considered. They are checking to see if coumadin I take rules me out. I pray that it won't.

Nattyb

nattyb · 07-09-2009, 12:08 PM

I have been asked If I would like to be in SB509 trials at Johns Hopkins. I hpoe I meet the critera.
nattyb

gotanygrapes? · 07-09-2009, 02:29 PM

That's the one my aunt will be in at the end of this month. I hope to that you will be able to participate. Everything sounds really good. Take care, and I'll keep you updated on how things go for her.

Booklady · 07-09-2009, 04:39 PM

My husband is also scheduled for a screening appointment at Johns Hopkins this month for this trial. The contact there said it wasn't filling up as fast as some because of the required monthly visits over the next 11 months and many people have to travel a distance to get there. We're planning to go to the appointment to see if he qualifies even though it will require a 6 hr. drive each month. We too are interest in hearing from anyone else who has started the treatments. Keeping our fingers crossed.

Figet1 · 07-10-2009, 10:12 AM

My wife started the trial in SF. She had to discontinue Lithium and be off of it for 30 days. She had to do several tests to make sure there were no cancerous tumors that might grow due to the injections. She was finally accepted and got the first 56 injections last week. She will get another set of 56 in 90 days. I saw Pam's reference to diabetes. From what I understand, this drug was first trailed on diabetic neurapathy and during that trial patients experienced some muscle and nerve regeneration. Because of that they decided to give it a try on ALS patients. Let's hope it helps.

Bill01 · 07-13-2009, 10:34 AM

I have my spinal on Friday. Then the injections next Friday. Keep the posts coming