Guest guest Posted March 18, 2004 Report Share Posted March 18, 2004 > Hi , Sorry to hear about your medical problems. Hopefully you will enjoy this group, everyone is great. and a answer a lot of questions. I don't post alot but am trying to get better about that, have been busy with family. Hope things start getting better for you soon. in Central Oregon Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 19, 2004 Report Share Posted March 19, 2004 Hello , Welcome to the group, sorry you had to join our elite club at such an early age, but there's really no " good " time to do this. Sounds like you have had far too long an initiation into this club. I do hope that your treatments begin to show some improvement soon. I'm a 58-year old grandmother, also living in a small town in southern Indiana. My husband has Parkinson's disease, but he doesn't let it interfere with his life too much, he's always been a laid-back person anyway. We have a grown daughter (26) who has year-old triplets and a 4-year old son. I have Dercum's Disease, which is a rare disease and I have recently applied for disability which should be interesting since no one has ever heard of it. Of course I always get the " but you don't look sick " comments but I'm learning to ignore them. I'm glad you found our group, and hope we are able to help each other. Judi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2004 Report Share Posted March 20, 2004 Welcome, ! I'm very sorry about your lupus diagnosis and that you've been ill for so long - and at such a young age. Did they change your diagnosis from MCTD to lupus or add lupus to MCTD? Do you have a copy of " The Lupus Book " by Wallace, MD (second edition - 2000)? It is an outstanding resource for lupus patients and their families. Every lupus patient should read this book. The following is a link to a very important article written by Dr. J. Wallace entitled " Management of lupus erythematosus: recent insights " : http://www.rheumatology.org/annual/sessions/Dr%20Wallace.pdf Even though the book and article are getting a little old (from 2000 & 2002) since things in the lupus world are changing so fast, they contain valuable information. With any luck, a new edition of the book will be out soon. If the Cytoxan isn't working, have your physicians considered trying CellCept (mycophenolate mofetil) for your lupus nephritis? Are you seeing both a rheumatologist and a nephrologist? Hospital for Special Surgery " ACR Special Report: Mycophenolate Mofetil vs. IV Cyclophosphamide as Induction Therapy for Severe Lupus Nephritis " : http://rheumatology.hss.edu/phys/acrSpecialReports/lockshin_mycoVScyclo.asp I was also sad to read that you can't continue to work. I hope you get your disability approval very soon. I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] My Introduction ... > > Fellow Arthritic Members, > > > > My name is and I've just recently joined this list. I'm from a little city in southern Georgia ... just your average country gurl. I was diagnosed with Mixed Connective Tissue disease when I was 13. Now at 21 I was diagnosed with SLE (Systemic Lupus) May of 2003. Currently I'm in a flare undergoing Cytoxan chemotherapy due to having Lupus Nephritis which is kidney involvement. I've had 5 treatments and so far the chemo isn't working but I have my hopes high that it will kick in eventually. Being on Prednisone also has helped with the inflammation and the tiredness. > > > > Because I was so tired it was hard to go to work everyday. Since I couldn't always make it I was eventually fired. I've been declared disabled for a year or more by my doctor. Right now I'm waiting to hear back from social security so hopefully that will go through. I came to this group looking for support and understanding from people who are going through the same things that I'm going through dealing with this disease. I hope that I can make some friends here because I'm very willing to listen and eager to help if I can. I'm looking forward to hearing from you all. > > > > -. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 20, 2004 Report Share Posted March 20, 2004 Hey There, Welcome! You'll find this group to be a great source of support and information. Since reading many of the posts and getting a few replie to mine, I have developed a better base from which to ask questions of my rheumatologist. Cheers! Jutta Quote Link to comment Share on other sites More sharing options...
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