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View Full Version : Going To Meet With A Place About A Clinical Trial.



wrightrs
06-28-2011, 04:02 PM
I have a appointment to be screened about a study. If I do it I'll be trying some new meds. It will be injections or IV. Not sure if I want to do it or not. But I may do it to help find a cure for lupus.

Peridot20_Gem
06-28-2011, 04:56 PM
Becky,

If you go ahead i wish you all the best of Luck and hope you keep we updated..have they stated when they would like you to start the meds.

Well your braver than me i've done a few new meds on the marks for other illnesses i've got and been very reluctant to what could face me, some i've been ok with other's i've not but i would'nt do it again...i like going on meds where other people can say their views about it then you've got a widder range to make your mind up with.

Hugs Terry xxx

rob
06-28-2011, 05:12 PM
I have a appointment to be screened about a study. If I do it I'll be trying some new meds. It will be injections or IV. Not sure if I want to do it or not. But I may do it to help find a cure for lupus.

That, is awesome. And it's a tough choice. That you would even consider doing this-well, that's pretty cool.

steve.b
06-28-2011, 06:59 PM
i hope all goes well.

Gizmo
06-28-2011, 06:59 PM
Do you know the name of the drug? I am in a drug study of Epratuzumab, which is a monoclonal antibody. If we are in the same study (done at multiple sites), then you will have weekly IV infusions for 4 weeks, then no infusions for 8 weeks - with 2 "check up" appointments in between. I just finished my second set of infusions (I'll get a total of 4, unless the study is extended) and my energy level and mood are definitely improved. The jury is still out on less joint and muscle pain, and my daughter says my memory is getting worse - but so is hers (she has brain fog too). I have had one concerning side effect, but I've been told I am the only one they have had with this problem and we're not sure it's really the drug. The info I got when I started was that there have been 208 patients so far in the lupus study, but online I saw that it is being used for cancer as well. I met a woman during my infusion who was one of the original participants. She's been getting it for 3 years and says she doesn't know what she will do when the study ends.

wrightrs
06-28-2011, 07:00 PM
Terry and Rob, Not sure when I would start the meds. I have to be screened first and have my records sent there. If I have certain heath problems they can't use me. One good thing about it is I can try out a new rheumy that has a office here. The first part of the study they don't tell you what the drug is. But the second part they tell you what it is.

wrightrs
06-28-2011, 07:21 PM
Gizmo, I have not been told what the drug is. The first part they will not tell me. The only thing I know right now is Eli Lilly is the drug company. I go for the first appointment the 13th. I definitely don't need anything that will make my brain fog worse.

rob
06-28-2011, 07:25 PM
Terry and Rob, Not sure when I would start the meds. I have to be screened first and have my records sent there. If I have certain heath problems they can't use me. One good thing about it is I can try out a new rheumy that has a office here. The first part of the study they don't tell you what the drug is. But the second part they tell you what it is.

Yeah, not knowing the drug is pretty much SOP for clinical trials. The possibility of seeing a new (and maybe better) rheumo is definitely a plus.

Gizmo
06-28-2011, 07:51 PM
Gizmo, I have not been told what the drug is. The first part they will not tell me. The only thing I know right now is Eli Lilly is the drug company. I go for the first appointment the 13th. I definitely don't need anything that will make my brain fog worse.

It doesn't sound like the same study I am in. For one thing, it is being run by an independent company, not the manufacturer. Plus the consent I signed had the drug and potential side effects listed. Hey, if there is more than one new drug in testing that's great news for us! Please keep us in the loop about this.

magistramarla
06-28-2011, 10:31 PM
It seems that there is a lot of research going on for AI diseases lately. I sure hope that they find something that works for all of us.
Good Luck!
Hugs,
Marla

lovedbyHim
06-29-2011, 12:57 PM
Gosh I find you women to be very brave. Please do keep us updated and bless you both as this stuff tends to worry me.

Peridot20_Gem
06-29-2011, 05:51 PM
Terry and Rob, Not sure when I would start the meds. I have to be screened first and have my records sent there. If I have certain heath problems they can't use me. One good thing about it is I can try out a new rheumy that has a office here. The first part of the study they don't tell you what the drug is. But the second part they tell you what it is.Becky,
I'd let them run the tests if your determind and see what the rheumo says before you actually try the drug and see what he/she's opinion says. xxx

wrightrs
07-13-2011, 05:10 PM
I went for my screening appointment today. They gave me a complete physical. Lot of labs, tb test, ekg, and I go somewhere else for a chest xray. I go back in two weeks and if they accept me I start the drug. The name of the study is ILLUMINATE-2 Research Study. I'm very ameinic right now. Sothat and other things may keep them from using me.

wrightrs
07-13-2011, 05:29 PM
This is the link to the study I'll be on. If I do This It will last 2 years.

http://www.illuminatestudies.com/about_the_illuminate_program.aspx

tgal
07-13-2011, 06:23 PM
I have a appointment to be screened about a study. If I do it I'll be trying some new meds. It will be injections or IV. Not sure if I want to do it or not. But I may do it to help find a cure for lupus.

I just find this amazing. The fact that you are even thinking of doing this humbles me. Knowing that you could get helped or maybe harmed by a new drug and considering it anyway says so much for who you are. It is only through these trials do we get our meds. I am proud to know you no matter what you decide

tgal
07-13-2011, 06:24 PM
That, is awesome. And it's a tough choice. That you would even consider doing this-well, that's pretty cool.

*Chuckles* Great minds think alike (GMTA)

jae li
03-04-2014, 08:49 AM
how did it work out? i am meeting with a doctor in a couple days to see if i can participate in a trial for Epratuzumab. i would love any input.

Saysusie
03-06-2014, 08:23 AM
Her last post about joining the study was in 2011 (3yrs ago). We've not heard about the study since then and her last post was in 2012. We've not heard from her since then and we all hope that she is doing well.

Peace and Blessings
Namaste
Saysusie

Moonbeam
03-11-2014, 07:37 AM
I commend you. You are very brave. Love your cat pic!