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bamagirl
03-24-2009, 12:33 PM
Hi everyone,
I am new to this forum, i belong to another one assciated with the Lupus
on another site, but alot of them are in the UK and their meds and other problems and solving them are out there for me, so glad i found this one so
i will know what you are talking about..
I have had SLE for about 9 years and my rhumey is in Birmingham Al. at UAb
I am on Methotrexate inj. Plaqunail, Prednisone,Zoloft, Klonipin, Neurontion,
and several more, plus i am in a study for a new drug they are probably
going to develop, that has shown alot of promise, i finish that in May and go
on a TRUE maintance dosage (Can't wait).
Anyway that's a little about me, hope to talk to alto of you in the future.
Have a great day:cute:
Pam

pamjw
03-24-2009, 02:10 PM
Hi PAm
I just joined also and Iam finding that its so far so good here.
Sounds like you have quite a list of meds. I was curious what the mexa one is for. I have herd it mentioned before and don't know what it is.
Pam:unsure:

pamjw
03-24-2009, 02:11 PM
I guess it was metho...
Pam

mountaindreamer
03-24-2009, 02:58 PM
hey bamagirl,

i am in atlanta but was raised in tuscaloosa....family is still there. where are you? i would be interested in learning more about the study that you have been participating in.

welcome, hope you can learn from the members, and i look forward to learning from you.


Pamjw, methotrexate is an immune-suppresent drug. i believe it is similar to imuron. i am scheduled to start it next week.

BonusMom
03-24-2009, 03:33 PM
Welcome aboard! You can't find a better forum than this group of lupies!

Saysusie
03-24-2009, 04:24 PM
Hi Pan;
Welcome to our family. I hope that we are able to give you insight, advice and information that you can better relate to. Everyone here is kind, supportive, and informative. I hope that you will like it here and that you decide to stay for a while:yes:

Peace and Blessings
Namaste
Saysusie

tasha
03-24-2009, 07:26 PM
hi pam and welcome!

what is the new drug that they are developing? i also would like to participate in a study...

maguadalupe
03-24-2009, 08:04 PM
Hello how are you today . I have SLE for about 7 yrs . i also take planquenil ,Sulfate,Amitriptyline and paxil know . I need someone talk to for the reason i have question regarding this (SLE)

1.i wonder if anyone skin is sensative to the point that you could not put a bra on ?
2. Also can anyone explain why i will so tried all the time as older i'm getting ?

mountaindreamer
03-24-2009, 09:26 PM
hi mag...

welcome to the site. you will have no problems getting your questions answered here.

yes, sometimes my skin hurts so bad that even brushing my hair causes pain. some mornings putting on a bra is not even an option.

being tired.....oh, yawn, this is what gets me the most. i can not believe that i can only go a few hours before i have to lay down.

lupus is a life-changing disease, and we have all had to alter our daily activities, including work....i no longer work full time.

again, welcome, you will get lots of support here.

Angel Oliver
03-25-2009, 07:32 AM
Just to say hello and welcome Bama & Mag.

love
Angel.xx

bamagirl
03-25-2009, 09:30 AM
It is a chemo drug, and i use it to keep the inflammtion some what at bay..
I use the injection form because the oral type has alot of side effects.

bamagirl
03-25-2009, 09:51 AM
Hey,
The drug study that i am in is at Uab in Birmingham, My rhumey who is the
head of the study is also the head guru over the rheumatology dept. at Kirklin Clinic.. The name of the study is BLISS which stand for (Belimumab
International SLE Study). The drug belimumab,is a fully human monoclonal
anti-BLyS(B-Lymphocyte Stimulator) antibody..that is a mouth full..
I don't know what the drug will be called when it goes to market...but i have seen some improvement in my symtoms, like mouth ulcers are better,(don't have them as often and the joint pain is somewhat decreased, but i think i am getting a small dose, i am hoping in June, when i start on the maintance
dosage that i will get the BIG dose as the nurses call it... They did tell me that one woman on the study somewhere has gone off of ALL OF HER MEDS
execpt for the study drug...(fingers sre crossed). I'm sure your rhumey
probably knows about the study, if not i will find out if they are still excepting
patients and give you the number to call...
Sorry this was so long, but hope it helps someone...
ps: i think they are doing this in other states also.
Have a good day
Pam