Hello from a Newbie
I am a 47 y/o mother of two daughters, 21 and 19. My SLE was diagnosed 12 years ago, and I am currently on Plaquinil, Quinacrine, Imuran and am enrolled in a double blind study of a monoclonal antibody drug specifically for lupus. I suspect I am getting the drug, but I will never know for sure. Have just had one cycle of the "drug" so far.
My younger daughter has undifferentiated connective tissue disease, Ehlers Danlos Syndrome, adrenal insufficiency and various other problems. Enrolling in the drug study was a big step for me because I have been taking care of my girl full time for 5 years, and not really caring for myself.
Hi Gizmo! Welcome to WHL! We are really glad that you have joined us. 12 years is a long time to have dealt with this. As you know it is really important that you take care of yourself so things don't get out of control. Having said that, I don't know of anyone that wouldn't do what you have done and put all of our effort into our child. It is hard to remember that if we don't take care of ourselves there will be no one here to take care of our children.
Please make yourself at home. Look around at the old posts or start new ones if you wish. You are now a part of our WHL family and we will be here for you!
May I ask if the "drug" seems to be helping and, if so, what parts it helps?
Success is not final, failure is not fatal: it is the courage to continue that counts.
At the 8 week point in the study I noticed that I didn't have to grit my teeth to kneel down and it was easier to open jars, etc... I have some muscle involvement, as well as joint and I think that did improve. I have weaned off prednisone and am getting achy, but it is almost time for the infusions to start again. The prednisone thing is weird because I had to go on it in order to be in the study - so that I could then "get off" of it. I actually have felt worse since starting the study - generally yucky and exhausted, and I started having chest pain when I walked even a block or two. Apparently I am the only one in the history of the study to complain about this, so maybe it's not related. Most people get flu-like symptoms for a few days after the infusions, but then it goes away. There have only been a couple hundred people tested so far, so who knows.
it is good to hear that you are caring for yourself, sorry about yourdaughter.
please take the time to read other threads, there is a lot of useful information.
The Following User Says Thank You to steve.b For This Useful Post:
Welcome to WHL and it's nice to have you with us, there's so many threads to venture through and learn more after 12yrs of suffering Lupus.
I do admire you for going for the usage of drugs to see what helps you and thinking of number one and trying to feel better...i'm sorry about you grandaughter but i do hope things work out for you, as we all know what your going through with the Lupus.
~Hugs Terri~ xxx
The Following User Says Thank You to Peridot20_Gem For This Useful Post:
Thanks for the welcome everyone! I dropped out of message boards many years ago because they got to be a downer. This seems to be a very upbeat group, even when people are struggling, it feels positive.
The Following User Says Thank You to Gizmo For This Useful Post: