Lupus Support Group

Hi, Please excuse my ignorance, I don't know much about lupus and I am trying to learn as much as I can and have been reading some posts. My wife was just told by her rhemetogy specialist that she has lupus. She first went to the doc. for a problem with her thumb, turned out to be trigger finger and got a steroid shot and still hurts her but feels better. They also checked her blood level to rule out other diseases. Turns out her blood came back positive for ANA. She then had her thyroid checked and came back ok and then she was sent to a auto immune disease specialist. He took a look at her result and right then and there told her she had lupus and that it was probably has been in remission but she has it. She has now had her blood taken for more tests and is set to have x-rays taken of her chest, hips and knees. We are waiting and scared of all of this and it is consuming me. I have been reading that estrogen plays some role in lupus and wanted to get anyone's opinion on our situation. My wife and I just had a beautiful baby girl 15 months ago. My wife stopped breast feeding in December but just got her period only 2 months ago. She saw her OBGYN about 4 months ago and she put her on estrogen pills and said wait a month and it will probably come. Didn't come and then she put her on stronger pills and said wait again for another 30 days and if finally did. Around the time of her first period she went into the doctor to get her blood drawn to find out what is going on and the result came back as I said with a high ANA.

Does anyone know if this has anything to do with the positive high ANA, should she be retested now that her estrogen levels are more normalized? I don't know ... Any feedback would be great to hear, I am very sad and still hoping this is not a reality, I am sure we will know more when all our results come back, but this is driving us insane right now.

Thanks for your responses!

Hello Husband. I am a medical instructor as well as a woman that was diagnosed with lupus 10 years ago. What's so ironic is that I was diagnosed after suffering a stroke. My stroke was induced by estrogen levels in my blood. I went to my Ob/Gyn to get help because I was feeling quite tired and had many joint pains and my period was becoming more and more irregular. She decided to place me on birth control pills that have a high level of estrogen, because after blood work she discovered my levels were off. I took them for about a month and started having more and more pain, mainly headaches and joint pains. Then one day while at work (in my internist office) I suffered a stroke and spent 7 days in the hospital. My internist began to run numerous test and one was an ANA. My ANA and Sed Rate came back extremely high. My ANA was off the charts. So he sent me to rheumatology, there it was confirmed that I had lupus. So an ANA definitely plays a part in your diagnosis. There will be constant checking of her ANA, sed rate, complete blood counts, and many others. If you need any other information, I would be more than happy to answer them for you. Like I said, I teach it and live it!

Juanita

What a considerate husband you are. You're wife will need lots of support if she does have lupus especially with a toddler running around. One thing you will notice when reading this board is that every lupie is unique. No two of us have the same symptoms and no two of us have the same test results. I'be had lupus for 15 years and my ANA is rarely above 40. My daughter's is also 40 and she doesn't have lupus. ANA is only one indicator used in the diagnosis so don't get too crazy about the number. It is also indicative of other autoimmune diseases. You will also learn that most lupies have more than lupus. I have sjorgen's syndrome, sclederma, raynaud's. The symptoms crossover. So hang in there. Diagnosis can take awhile. The best resource is Daniel Wallace's "The Lupus Book". The 4th edition just came out. I highly recommend it.

Heidi

Hi Juanita and Heidi, thank for you for sharing with me your experiences. I hope to have more information when my wife's blood results come back, hopefully friday. I will be sure to share with you the results when we find out and I'm sure I will have more questions... But one thing that I still do not really understand. I did not like it when the doctor told my wife that she has lupus, just from seeing her blood results and the positive for ANA. You say ANA is only one indicator used for diagnosis, don't you think it was premature for the Dr. to automatically diagnose her with lupus with only the ANA positive results and not knowing what her other results are? And could there be a possibility that because of her strong estrogen pills she was taking could have resulted in her positive ANA ? So in other word could she test her blood again and be negative for ANA?

Thanks again for your responses, it is nice to know there is this great source of information and people to share with. It has been very hard for my wife and I in the past few months. I have been living in Los Angeles working and traveling home on the weekends to be with my wife and daughter. So she is Sacramento by herself Mon-Fri with our daughter and it has been very stressful on both of us trying to find jobs. Possibly the stress could have triggered something too?

Tom

First, thank you for being so supportive of your wife and her situation. Everyone's situation is different from year to year, month to month, day to day, second to second. Get my drift. If she only has a positive ANA, I would continue the search because most docs wont say Lupus only with a positive ANA. I wouldn't want her to be treated with all the harsh meds if she doesn't need it. Meds can actually cause people to HAVE lupus. So I would get a second or even a third opinion.

Hi,

It can be extremely hard and I think its awesome you are being so supportive....She needs your support now more than ever...Like everyone has already said, everyone is different and its not only tests that determine if you have lupus, there is criteria you meet. I wish you and your wife all the luck with this and I hope you find answers soon so she can get better!

Kelly

Since she saw an autoimmune disease specialist, I am sure they looked at everything. Many people go for years trying to figure out what is wrong.So. in a way, she was lucky to be diagnosed so early.

Often time the is big event that triggers a lupus flare. I know I went into one after giving birth. So maybe the extra estrogen put her into a flare, but that means the lupus was already there.

You are great to try to find out about lupus. The most important thing is to be there for her. Hopefully once they get everything figured out they can find the right combo of drugs and she can continue being a great Mom to your little one.

Alison

Post edited by: redhairali, at: 07/30/2009 07:30 PM

It is said that lupus is genetically predetermined and environmentally triggered. I don't know if the estrogen could be the trigger. In my case it was meningitis.

My best advice is to find a really good doctor. Since you live in CA I'd try to see Daniel Wallace, the author of the "lupus bible". He's at UCLA. Make sure you get copies of all the test results.

Keep us posted.

Well, I have been sick off and on all my life and never thought anything of it. Stress definitely plays a factor in flare ups. My rheumy also told me that based on my medical records, my flare ups actually started after having my son 2 years earlier. That's when it seemed my body fell apart. Even during my pregnancy I seemed to stay sick, achy, headaches, and others but chalked it up to pregnancy. Like they said and ANA is not the only indicator of lupus. A positive ANA could signal other autoimmune diseases as well, such as Rheumatoid Arthritis. So definitely don't just stop at the ANA, have the doctor explain to you how her diagnosis was cofirmed. That is the first question I asked when they told me, "How do you come to that conclusion? Show me results and allow me to research it before you give me medicine for something I may or may not have!" Just hang in there. Continue to be supportive of your wife. She'll definitely need it. Like I said, stress is one of the major triggers of lupus flares.