Page 1 of 2 12 LastLast
Results 1 to 10 of 19

Thread: Going To Meet With A Place About A Clinical Trial.

Hybrid View

  1. #1
    Join Date
    Mar 2009
    Location
    Charlotte, NC
    Posts
    629
    Blog Entries
    16
    Thanks
    5
    Thanked 17 Times in 13 Posts

    Default Going To Meet With A Place About A Clinical Trial.

    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.
    But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. Isaiah 40:31

    Take Care,
    Becky

  2. The Following User Says Thank You to wrightrs For This Useful Post:

    Peridot20_Gem (06-28-2011)

  3. #2
    Join Date
    Feb 2011
    Posts
    2,036
    Thanks
    345
    Thanked 365 Times in 315 Posts

    Default

    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

  4. #3
    rob is offline Super Moderator Super ModeratorEmperor of the World
    Join Date
    Feb 2008
    Posts
    3,681
    Thanks
    426
    Thanked 1,105 Times in 628 Posts

    Default

    Quote Originally Posted by wrightrs View Post
    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.

  5. #4
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,964
    Blog Entries
    1
    Thanks
    1,414
    Thanked 1,645 Times in 1,130 Posts

    Default

    i hope all goes well.

  6. #5
    Join Date
    May 2011
    Location
    Colorado
    Posts
    645
    Thanks
    456
    Thanked 353 Times in 232 Posts

    Default

    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.

  7. #6
    Join Date
    Mar 2009
    Location
    Charlotte, NC
    Posts
    629
    Blog Entries
    16
    Thanks
    5
    Thanked 17 Times in 13 Posts

    Default

    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.
    But they that wait upon the LORD shall renew their strength; they shall mount up with wings as eagles; they shall run, and not be weary; and they shall walk, and not faint. Isaiah 40:31

    Take Care,
    Becky

  8. #7
    Join Date
    May 2011
    Location
    Colorado
    Posts
    645
    Thanks
    456
    Thanked 353 Times in 232 Posts

    Default

    Quote Originally Posted by wrightrs View Post
    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.

  9. #8
    Join Date
    May 2007
    Location
    Seaside, Ca.
    Posts
    3,871
    Thanks
    196
    Thanked 948 Times in 732 Posts

    Default

    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

  10. #9
    Join Date
    Mar 2014
    Posts
    2
    Thanks
    0
    Thanked 0 Times in 0 Posts

    Default

    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.

  11. #10
    Saysusie's Avatar
    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
    Join Date
    Nov 2001
    Location
    Victorville, California
    Posts
    7,787
    Blog Entries
    10
    Thanks
    1,640
    Thanked 944 Times in 597 Posts

    Default

    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
    Last edited by Saysusie; 03-06-2014 at 08:26 AM.
    Look For The Good and Praise It!

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •