Good morning and thanks for your help with my last posting!

I have talked with the doc's office this morning. The nurse said that my ana (not sure about the levels) was negative, but that the biopsy of my rash was positive. So, it sounds like I have the skin form of lupus. I go back to the dermatologist on monday to discuss treatment.

I am not clear on how the skin form could or could not relate to other symptoms. Particularly fatigue, weight loss, and gi problems. My understanding (from research on the internet) is that the skin form of lupus is at the mild end of a continuum. I suppose I will get more info when I see the doc again, but thought someone here might could give me some insight.

Thanks again for your help and support! Obviously, what I have is not severe (like others of you have...), but it's still no fun to have a chronic illness!
Did you find this post helpful?
|

replied October 9th, 2003
Active User, very eHealthy
First off, while it is common that most lupus patients have a positive ana, I know several people who have lupus and do *not* have a positive ana.

With the test results of the skin biopsy being positive, you could have discoid *or* systemic lupus.

Therefore, I would advise you seeing a dermatologist and a rheumatologist!

Hugs,
ladybrannon
|
Did you find this post helpful?

replied October 9th, 2003
Before my diagnosis, I had a form of the skin also - mostly on my forehead -but now that seems to have been contained that im on my meds. The other problems come and go. I had the weight loss (which does'nt bother me at all!), the hair falling, which did bother me, and various other things - which seem controlled with the plaquaill that im on. Its always something!!!!!
|
Did you find this post helpful?

replied October 9th, 2003
So, it rather sounds like i'm not completely out of the woods with the sle diagnosis (which I though I was or might be after the negative ana). Does the skin/rash biopsy that was positive for lupus an item on the official list of sle diagnostic criteria? If so, I would fall into at least 4 of the 11 categories, which suggests (or can diagnose) the systemic form. This is a bit confusing!

I guess i'm asking if the symptoms that I have (discoid rash, fatigue, hair loss, weight loss, possible blood clotting problems...With my hemhorrage after giving birth) along with the positive biopsy would cause a doc to diagnose me with sle?

I am still having a lot of problems with my tongue. When it flares, I can barely eat. The prednisone is killing my appetite (i know...It makes no sense!). Plus, I keep getting an awful taste in my mouth, especially when I wake up. The only solution for the mouth problems that i've gotten from the doctor is to use magic mouthwash. That affects me by making me nauseous...Still don't want to eat! Do you find that docs will prescribe pain medications to keep on hand for these flare-ups? The nsaids and aspirin make me sick to my stomach.

I'm going to stop rambling now. But, i'm sure you're all aware that when your doc says "lupus" it can become almost all-consuming!
|
Did you find this post helpful?

replied October 10th, 2003
Active User, very eHealthy
Right you are, willow! Once you are diagnosed with lupus, a lot of your symptoms are suddenly "explained." Smile

well, I can only speak from my experience, but I can tell you how I do my treatments...And let me be *very* clear that this is done under doctor supervision and permission!!!!!!!!!!!!!!!

I *always* have serious painkillers, prednisone and insulin on hand. By that I mean, if I feel myself going into a flare, I immediately take 60 mg of prednisone and began testing my glucose.

For pain, I have everything from aleve (namebrand, otc) to morphine. Seriously...
I also understand that I don't take *anything* for pain unless it is absolutely necessary to function. I think there are people out there who think I take them just to take them. I can assure you that I do not, nor do I want to...I was on oxycontin for about 8 months last year...I went through three damn days of *withdrawals*!!!!! That sucked. I won't even go into the hell of what I went through...

Your doctor *may or may not* diagnose you with sle based on your symptoms...I would, however, ask for more blood work to be done. It is very feasible to test positive for some of the blood tests and not others.

As for your skin biopsy, I would sit down and write down your questions and then hand that piece of paper to the doctor and insist on very clear, concise answers.

You also have the option of getting a second opinion...Never a bad idea in *my* experience.

I'll be thinking about you. Goodness knows that getting a diagnose (sle or no) is difficult.

Hugs,
ladybrannon
|
Did you find this post helpful?

replied October 12th, 2003
Lupus
I never got the rash on my face instead there often
appears this lovely "butterfly" on my chest. Before
being diagnosed I noticed it most often when I was
extremely stressed out. So I thought it was nerves.

One thing for certain.... When you are allergic to
yourself it affects a whole lot of stuff

Mr. Green
|
Did you find this post helpful?
Quick Reply
Answers to Similar Questions
User Profile
Deepak Anvekar
User Profile
Deepak Anvekar
User Profile
Dr. Nikola Gjuzelov
User Profile
Deepak Anvekar
User Profile
Harpreet Singh
Must Read
Learn the basics about autoimmune disorders, including risk factors, diagnosis, and treatment options. ...
Learn about risk factors to developing an autoimmune disorder. ...
Learn about screening and diagnosis options available for autoimmune disorders....