View Full Version : Just found this group-live in CA
I was diagnosed about 4 years ago. Of course the initial diagnosis was RA, then carpal tunnel, until I met with a rheumy. I currently take plaquenil, methotrexate, both low dosages, and a host of vitamins. My flare ups have been minimal since I've been on metho. Tried prednisone, low dosage, but it didn't help to reduce or lessen the flare-ups.
I live in San Carlos, CA, which is on the Peninsula, south of SF. I just moved to San Carlos two weeks ago and am looking for a rheumy who specializes in lupus. I will not see a rheumy who does not specialize lupus.
I lived in Pittsburgh for 1.6 yr where the Univ of Pitt has a Lupus Center of Excellence, and I received excellent care. I miss the Center already.
I'm married and have a 8 yr old daughter. OF course, I have the usual lupus symptons: fatigue, migraines, joint pain, easy bruising, hair loss and gain, memory loss and sensitivity to sun (I know and I live in sunny CA).
I want to connect with others living with lupus and am glad, really glad, to find this support group.
01-13-2009, 11:00 AM
This group is great isnt it?
I only found it 1st december, wish i found it sooner
lol im watching the simpsons and a bit came up about the lupus fun run how odd to be watching that when writting this!!
anyway welcome to the forum and i hope you get answers
01-13-2009, 11:07 AM
Welcome, rss2! I just wrote a pretty long reply, but didn't let me post it, because it had the site of the California Lupus Foundation of America. Their headquarters are based in Burlingame, where I live. It's pretty close to San Carlos. When I moved here, the most difficult thing was the too sunny climate and finding a good rheumatologist. On the web site there are lists with rheumatologists. From my own experience I can tell you that even though it says that they are specializing in lupus, some of them never saw a lupus patient before and didn't know what to do with me. If you have more questions, I would love to help you if I can.
01-13-2009, 11:08 AM
Welcome to our family. I hope that you are able to find a good Lupus specialist where you live. I am originally from Pittsburgh, but have lived in California since the age of eight. I am in Southern California (50 miles east of Los Angeles - The Inland Empire).
You will find that the people here are truly understanding and there will always be someone here to help you when you need it. Everyone here knows what you are going through, no one judges you and we all want to help you to manage your Lupus and live a relatively normal lifestyle.
I am so happy that you found us and that you decided to join us!
Peace and Blessings
01-13-2009, 11:42 PM
Welcome :!: I am so happy that you have found us and that you are a part of our family here. You will love it here. Everyone is so loving and supportive. There will always be someone who can relate to exactly what you are going through. You will be surrounded by people who are very educated when it comes to Lupus and can help answer some of your questions. We are all here for you and will help you get through the tough times and celebrate with you when you are having a great day, week or month.........hopefully years too :D Again, welcome and keep posting so that we all can get to know each other :angel: By that way I am also on methotrexate.......I am on a pretty high dose :( Oh well, it works :wink:
01-15-2009, 10:21 PM
Welcome aboard! I am 30 miles east of Sacramento and drive to San Francisco for treatment with Nancy Carteron, MD (240 miles round trip). I just received my diagnosis on Dec. 18th, so I'm not exactly a veteran member here. I have been very happy with my treatment thus far. It took me a couple of months to get in for my first consult, but it was worth the wait.
01-16-2009, 07:30 AM
Just to say hello and welcome :)
02-07-2009, 07:14 PM
Welcome! I am new to the site also but so far love it, love it, love it and so will you. It's great to have support from people who know and care! You will be blessed by these people and the support they give. I am in Wyoming and not much for support around here so the online support groups are great. 8)
02-07-2009, 08:53 PM
Welcome! I am new today and already falling in love with this place!
So do many MDs lie about having lupus as a specialty? I am looking for a doc now and will travel if necessary. Looking into Mayo in MN, The place in Pittsburg you mentioned... Not sure if insurance will cover it.
02-07-2009, 09:37 PM
Where are you from? Your signature does not say. How far are you willing to travel?
02-07-2009, 10:04 PM
I live in NH but would go literally anywhere where there was excellent care. Looking into Johns Hopkins, Mayo, the place in Pittsburg as well as Dartmouth close to home.
Even was looking at the center DR Hughes has in London! It seems that when I did some research for journal articles many were from the UK and I wonder if they treat this differently there.
02-10-2009, 10:42 AM
Hello and welcome Kukkukajoo :lol:
I am glad that you are here
Peace and Blessings
02-10-2009, 04:52 PM
hi rss and kukukajoo,
I want to welcome you both. As you can see, there are a bunch of people here ready and eager to listen and help.
share a smile today,