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Just diagnosed with skin lupus - ANA negative-

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Posted 7/4/2007 3:14 AM (GMT 0)

Hello.

... I am new with all this and need support from people who know what I am going through.  Here is a summary. 

In February - went to the emergency room with allergic reaction to lisinopril - a medicine that I have been on since 1999 for HBP. So began the trial and error of trying other meds. Currently I am on DynaCr and laxis (sp?) 

Later in Feb started to have swelling in my left ankle and foot. Seemed to get better than started back. Just left side. Some days worse than others.  Than my hips started to ache.  I am only 48 but when I get out of bed in the morning I sometimes feel like I am 80!

In May, had a mysterious (at the time) rash appear on my face. Did not itch and I didn't do anything at first. But after two weeks decided to go to my doctor who is an internist. With all these various syptoms she ran some blood tests for ANA,ESR, RA and all came back negative.  She sent me to get a venous dopplar on my left leg.  No clotting.  She sent me to a dermatologist for my face and the dermatologist did a biopsy meanwhile she prescribed Cutivate lotion and Oracea. Came back a week later and the biopsy confirmed that I had skin lupus. The doctors conferred with each other and I have an appointment now with a rhuematologist.  That appointment isn't until August 24th.

At this point all I know is that I have skin lupus.  The medicines seem to be working in clearing up the lesions on my face. It is still a mystery on the swelling and joint pain.

So this is where I am right now.  I have read a lot on the lupus foundation site and even bought a book called Living with Lupus, the first year.  However, the book and articles seem to focus more on the systemic lupus. 

Any feedback would be great! And I will keep the board posted on updates.

Thanks for reading.

 Trac

Posted 7/4/2007 3:53 AM (GMT 0)
Hi Trac, Welcome to Healing Well :-)

I have not been diagnosed with SLE however diagnosed with UCTD. I did however get diagnosed with Sub Cutaneous Lupus (SCLE) which is a highly photo/sun sensitive rash that develops. I am on Plaquenil and it is helping with my joint pain as well as minimizing the rashes. I didn't have an ANA positive test except for once when they ran a ANA Direct test. My anti-Ro antibodies are positive though which are highly associated with sun sensitivity and rashes. In SLE, this autoantibody can be negative and you can have RO Lupus (rare ANA negative Lupus). This seems to be the direction my doctor is going. Make sure you list all of your symptoms when you go to the doctor, all symptoms including things you wouldn't associate. Also you may ask that your rheumy test you for the individual autoantibodies (Lupus panel) as well as the ANA since even though its rare any one of those can come up positive (antibodies that can be positive with a negative ANA are more likely anti-RO and dsDNA)

Good luck with your appointment and finding answers.

Take Care
Posted 7/4/2007 4:17 AM (GMT 0)
Trac, you have come to the right place. There are some wonderful folks here who will give you the support that you need, and we all know what you're going through. I'm glad you're here and hope you ask any questions you have and keep us up to date on what's going on with you. Especially, feel free to vent when you feel frustrated with your situation, because we're here for you.

I hope you start to feel better and that your hip improves. You should know that I feel 80 most days when I wake up, but thankfully I get younger as the day progresses. Hope to see you back again soon.

Pat
Posted 7/4/2007 4:52 AM (GMT 0)
Hi Trac! welcome to the group. I don't know much about skin lupus but I do know about joint pain and the sweeling. I have gotten it from right under my knees to my toes so badly I could barely put on my boots. they have zipers and I couldn't zip them up. and the joints, oh yeah I just turned 50 two weeks ago. and feeling 80 sounds about right.

I just wanted to welcome you and I hope you find lots of info here. I know you will find tons of support. It's a God send to me.

again welcome and come back often
hugs
carol
Posted 7/4/2007 12:49 PM (GMT 0)

Thanks everyone for your replies. It really does help to know that others are going through the same thing.  My husband is trying to understand my condition.  I think I am going to see if he will go with me to my doctor's visit when I see the rhuematologist.

Today is a new day and I am going to get some exercise in. I actually slept well last night.  One of the things I read about lupus is you need to make sure you get rest and exercise. 

Have a safe holiday....I will try to get back online later. 

Oh Carol from Okie, I did read about your son and I will add him to my prayer list.  It is a blessing that his girlfriend is supportive.

Blessings to all,

Trac

Posted 7/4/2007 3:23 PM (GMT 0)
Hi trac,  I also wanted to add my welcome.  You have come to a great place for support, information, and understanding.  I'm sorry you have had to deal with these health issues, but at least it sounds like your doctor was on top of things.  I have read a little about scle and if I remember right,  some people with scle can go on to develope systemic lupus, but not all do.  It wouldn't surprise me if your pain and swelling were associated with your lupus.  Your rheumatologist should be able to tell you more about that and hopefully give you some answers.  I'm glad your husband might go to your appointment with you - the more he understands this illness, the more he will be able to provide support for you and really understand what you are going through.  There is a great website to check out: http://butyoudontlooksick.com   Check out The Spoon Theory at that site and also have your husband read it.  I have printed copies of the spoon theory and have given it to family and close friends. I'm sorry you have to wait so long to see a rheumatologist.  Will you primary doc give you something at least for the pain until you can see the rheumy? I'm glad you joined us and look forward to hearing more from you.  Take care
Posted 7/5/2007 7:18 AM (GMT 0)
Hi Trac,
welcome to this great place! I have had the same sort of issues as you are going through. Because my ana is also negative it makes diagnosis much harder, but like you i had a skin biopsy. Mine showed lupus also, cple, which is slightly different, but generally the same. With lupus, sle or not, symptoms can be difficult to treat. people with skin lupus can also get severe joint problems, also the fatigue, headaches etc. The vast majority of skin & joint lupus will remain this way, but it's good your seeing the rheumatologist, because any changes with your lupus can be picked up straight away. If you have any questions feel free to ask them. I'm no expert and the rheumy should help you, but sometimes it's just nice to speak to people who are living through the same as you. Take care x x
Posted 7/5/2007 1:52 PM (GMT 0)

What kind of allergic reaction did you have to Lisinopril?  Curious, I have been put on it and been having wierd reactions also.

Welcome to forum!

Posted 7/6/2007 12:20 AM (GMT 0)
Hi Trac:

Just another welcome to the forum. This is a terrific place to make friends, learn lots of information, and flat out talk about how you're feeling. I'm Barb and have had lupus for almost 20 yrs now. I've also got a few other things that makes my life difficult to say the least.

Hope you enjoy all the ppl here, they're great. Looking forward to getting to know you better. Again, welcome to HW.

Take care,
Barbara
Posted 7/9/2007 1:28 AM (GMT 0)

havasulupie said...

What kind of allergic reaction did you have to Lisinopril?  Curious, I have been put on it and been having wierd reactions also.

Welcome to forum!


My allergic reaction was a swollen tongue about an hour or so after going to bed.  I had taken my lisinopril at night like always and woke up from drooling about 2 hours later. I had nothing unusual to eat that night.  No new meds to the mix. Just another normal day. So it came upon me all of a sudden.  I had been on it forever with no problems.

Hope this helps!!

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