View Full Version : New to group
12-14-2008, 12:21 AM
Hello...I am 41 years old and have had lupus since I was 23. Well I guess I have had it longer but that was when I DX. So I have three children and wonderful husband. My youngest still lives at home. She is wonderful and very helpful to me...of course she knows me as always being ill. I own a horse stables, mostly the horses have always been my escape from pain and this horrible disease. But lately , the last two years since I lost my Rheumy doc I have gotten a lot worse. I have tried another doctor but his bedside manner wasn't the best and to have him hear me did work. Now I am starting with another..I hope it works out better but after all these years my hope isn't to high. I have tried many types of med's and I can't remember them all. To many years of fighting this horrible disease. I have lung involvement and pancreas issues also from this. I also battle with thyroid disorder and raynauds . I am tired..and would love to find people who understand what it is like to live with this.
Thank you Tam
12-14-2008, 02:49 AM
You have found it! I am new and everyone here is an angel and they are so educated! Everyone will help you with all of your questions and help guide you through this :D
You sound like you have an amazing family and support system at home. I know for me that has made the biggest difference. I know at times it seems like nothing is helping but I know the support and love help the most! My lupus has started to affect my lungs and that is very difficult. I bet it is even harder for you in regards to working with your horses :(
I have just switched insurance companies and I am on the hunt for a new doctor. I don't even know where to start looking :!: I have been going to the same one for over 7 years and feel safe and very well cared for and now what am I supposed to do :?: I guess it is another thing we must figure out :?
The good thing is we are not alone and someone is always here to listen and to talk to you when you need it the most :angel:
12-14-2008, 03:51 AM
Welcome Tam glad you found us :)
I have a pretty good family doctor, but I have a terrible rheumy and am on a very long waiting list for a particular rheumy that my family doctor wants me to see.
I'm currently on arthrotec and plaquenil, this combination has been working well for me.
I'm 48 yrs old and have deteriating joints, rashes, fatigue and edema.
This board is very warm and informative. I'm not full diagnosed yet, which is part of the reason my doctor wants to move me to another rheumy, the idiot I'm seeing at the moment thinks that lupus is just a catch all that doctor's use when they dont know what's really wrong with you.
So far she hasn't run alot of tests on me. She keeps running the same stupid blood works that do NOT include tests for lupus.
I have had possitive and negative tests for ANA.
I'm sure the others will be along soon to welcome you. :)
12-14-2008, 05:35 AM
Well you found a good site for sure. There are a lot of us with this illness and who have had it for years. I sure do understand about the doctor situation. For the past year, I have been beeing seen by the Physician's Assistant in my Rheumatologists office. She is a nice lady, but she can be rather rough talking at times. She got on my case, because my blood pressure was up on Thursday. Shoot I just had a death in the family and I am in a bad flare. She put me back on Prednisone and pain medications. I also had to get a shot in the hip and well I am feeling better, my right wrist still hurts. I hope that you can find a better doctor and very soon and that you get to feeling better. I hope that you keep posting.
12-14-2008, 09:35 AM
Hello and welcome.
I too am new here, but i do not feel so alone now. People here really understand.
12-16-2008, 06:53 PM
Hello everyone...and thank you for all the response on my post. It helped to hear from ya. I went to the Rheumy today...actually my Mom went with me. I discussed the situation and he thinks I have a overlapping issue with RA . So since I am unable to take a lot of the med's now he wants to try me on Humira. Was kind of surprised...and has anyone tried this?
He did help me with my inflammation and pain. I was surprised with this also...last time I talked with him he didn't seem like he wanted to help. I wonder if it helped my Mother was with me and she expressed the pain I am in all the time. I have fought for many years on not using pain med's. I am now to the point in my life that I need some. I felt like I was giving up...but now I know I just am tired of the pain.
Thank you again
12-17-2008, 10:39 AM
Whatever the reason, I am glad that your doctor is taking you serious and now prescribing treatments that will help.
Here is some information on Humira:
HUMIRA is a medicine called a Tumor Necrosis Factor (TNF) blocker. HUMIRA can be used alone or in combination with methotrexate or with certain other medicines. Humira is used to treat rheumatoid arthritis, juvenile idiopathic arthritis, psoriatic arthritis, ankylosing spondylitis, and plaque psoriasis. It is also used to treat Crohn's disease after other drugs have been tried without successful treatment of symptoms. Humira is known for causing Lupus-like symptoms (?). Perhaps you can ask your doctor about this, if you should continue to take Humira or is there another comparable drug that you can take.
Hopefully someone who has taken this drug will be along to give you some personal experience information.
Peace and Blessings