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New Year's Lupus Diagnosis
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TXDIYGal posted:
Well, I guess the title says it all. I started the New Year off by getting a definitive diagnosis for Cutaneous Lupus Erythematosus. Nice way to get the year kicked off, eh? In September, I developed a tiny spot of a rash on my right lower back (around the SI joint) and my husband (who is a FP MD) and I, figured I had developed shingles. I have had back surgery at L5-S1 years ago and have quite a bit of back pain and nerve damage from the car accident and foot drop that developed because of the injury. None of that has anything to do with the Lupus but you can see why we were kind of misled to begin with. Went to the doctor several times but the rash kept getting bigger and bigger and was absolutely excruciating. It literally felt like someone was holding an iron to my backside and I was being burned constantly with no relief. OMG the PAIN! I bought like 15 gel ice packs and had to just keep rotating them because it was the only thing that cooled the heat. And believe me the skin was HOT!
Finally, the Dr. referred me to Dermatology the first week of December and they did a biopsy. Well, with the holidays and all she had tried to call me two days before Christmas and I had tried to call her back but we missed each other and I missed my appointment to have the stitches removed because I was so sick (my hubby removed them with her offices ok). On Monday morning she called me before I even woke up and gave me the news. "You have Cutaneous Lupus and we want to do more tests". She asked me several questions about symptoms and turns out I have several things that point to the possibility that I may have had it for some time now. She has indicated that I could have had it for years and was actually fortunate to be diagnosed because many people suffer without a definitive diagnosis.
So-that's my story. I don't really have too many questions yet. I will post them subsequently but wanted to share my story. I guess my first question is how varied is the length of time for flares such as the rashes? My first rash lasted over three months, it cleared up for a couple weeks and started coming back again on Sunday evening. It is pretty debilitating and leaves me absolutely whacked! I look forward to learning as much as I can on here and meeting others who have learned to cope with this disease.
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Lupylisa44 responded:
Hi and Welcome!

I am sorry to hear about your diagnosis, but I am glad that you found us! This is a great site.

Most of the people here have SLE, but some have discoid/cutaneous lupus too.

Lupylisa
With love, with patience and with faith, we'll make our way.
 
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pugpuppy responded:
Welcome! I am so sorry, but glad you found us. The people here are so good at helping and don't be afraid to ask any question big or small, everyone here are wonderful.
Hugs Pugpuppy
Even if you fall on your face, you're still moving forward. Victor Kiam
 
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jessi19661 responded:
Welcome. I am sorry to hear of your diagnosis, I was just diagnosed wih sle on 22nd. Have been in a flare for over a month or 2 now. I have also had worsening skin rashes and lesions, despite plaquenil and prednisone tx. I get butterfly rash on my face and it BURNS and hurts, even causing headaches. Hopefully you wont have that. I would advise using sunscreen for UVA and UVB, also STAY AWAY FROM FLOURESCENT LIGHTS AND THE NEW LONG LASTING BULBS. Of course, ask yor derm b4 using it on any broken out skin. My rheumatologist says wear it everyday head to toe. I cannot tolerate any sunblock on my skin.......not good. I keep forgetting to tell him, but he would say keep trying new ones...I cant get out of a flare long enough to try one, not worth it......last time it put me in misery and bed for 1-2 days. Maybe my skin is so sensitive from lupus and all the lupus MEDS//// I dont know anymore. But you have the right idea about baths and soap etc. If you have any aches and pains or your face turns red, I would see a rheum to be sure you dont develop sle. Hopefully NOT. It sounds like you have enough pain to deal with. I also have lesions that are round flat red and circular on hairline forehead and temples that get scaly and go back in my scalp......I have and am again losing my hair there. It grows back, but shaggy. Screwed up my hair bad now have to part on opposite side, gives me a headache till I get used to it. Oh, the perils of vanity!! The lupus foundation of america is a good place for info. Also web md and many others to help you learn about the disease. If I could I would try to prepare and figure out if you might have or get lupus (sle), so you can be ass healthy and strong as possible b4 (if) sle hits you. When it hits it hits hard.
Hopefully your hubby can be of help. My dad a doc too, and mom a nurse, let me just say.....denial. Dad is slowly seeing that I am sick, he thinks I have celiac disease and it will all go away once I get an EGD and go gluten-free diet. My mom has it so does my daughter and 2 grsndbabies have the genes, so it had to go thru me. I think I may have had it and it caused lupus. My daughter has autoimmune hepatitis from the celiac damage to her GI tract, and probably lupus, although my rheum says lupus for her would be unlikely.....??
You might want to look into it though. I am too sick right now to schedule my EGD/colonoscopy, have to have done at same time under general anesthesia since I take too many meds and cannot be consiously sedated. My daughter is better thru gluten free, but she is now getting kidney issues, her liver is damaged but working well now. Just FYI on things you may not be aware of, have your smart hubby look into celiac disease.
OK, welcome. done rambling!! ;) jessi
 
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jessi19661 replied to jessi19661's response:
OOPS!! I did not mean to type as-s healthy....

I meant "as healthy"

;)
 
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TXDIYGal replied to jessi19661's response:
Thanks so much for everyone's comments-it is greatly appreciated. Although I haven't learned alot about it I have a strong impression that I probably do have the SLE. I have had Raynauds phenomenon for years, have had joint pain with increasing frequency/duration for several years, exhaustion and fatigue, 'losing my breath', numbness and tingling in hands, feet and facial area, increase in migraines over the last three years and increased to up to four a week in the last six months, and many more of the symptoms that have been plaguing me that doctors just keep looking at me sideways at going, Ummm-Hmmmm... I am sure you are all familiar with it.

Needless to say, it has been very eye-opening for my husband when he has gone to appointments with me to see how I have been treated by a few of these doctors. He even reported one PA who literally walked out of the treatment room while I was describing my symptoms, did not perform any type of exam, and had all of his staff and patients calling him "Doctor"!

It has been a very disheartening road. Having a diagnosis is NOT as terrible as it may seem. I finally have an AHA! moment that I can point to and say, SEE! I am NOT crazy!
I am fortunate for now that the rash is only located on my lower back and not on my face or neck. I did have a MRSA infection in my nose in August that I think is what kind of kicked off a systemic reaction in my body. I notice that my rash lasted a long time the first time, went away for a couple weeks and then I started my menses on Sunday and it came back that day and that is one of the things that can spark a flare. How about all you ladies who have already gone through the change? What sparks your flares? Those are my big questions...What are the things you do to stave off flares and then manage them to try to shorten them? I am 47 years old and fairly thin. I gained about 25 lbs this summer suddenly when they changed one of my antidepressants so that has kind of affected my tiredness. Anyway-I digress. I live in Central Texas and find that the heat of summer here is absolutely withering for me, but the mild winters are wonderful because of the situation with the Reynauds. How do ya'll handle weather and does it ever even affect how you feel besides the exposure to the sun that I am going to have to deal with?

I honestly think that I have had the systemic Lupus for a while and have just gotten the cutaneous Lupus. I have had too many of the SLE symptoms for several years for it not too have been there and just not have been there, just not been diagnosed. I think my two sister and her two daughters probably have it also and have not been diagnosed. Is there a definitive diagnostic test that they can do for the SLE? From what I have read you can have a positive ANA test and not have Lupus, and have a negative ANA test and HAVE Lupus, what other advanced tests are there. I am being treated through the VA healthcare system so try to understand that I will probably not get as advanced care as people who are cared for under an HMO or insurance. Unfortunately, as a disabled vet and with no insurance I don't have health insurance right now and probably won't be able to get any unless my husband can go back to work (he is disabled and not working right now).
Thanks again for all your comments and it's great to be here!
 
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K2isKsquared replied to TXDIYGal's response:
Welcome,

There is no single, definitive diagnostic test for Systemic Lupus. SLE is diagnosed using 11 criteria. If you have four or more of the 11 you may, or may not, be diagnosed with Lupus. Some of the criteria are labs, some are symptoms.

ANA is one of the criteria, but it is not a litmus test for lupus.There are other autoimmune diseases that can cause a positive ANA, and as you pointed out in your post there are plenty of perfectly healthy people walking around with a positive ANA -- these are people who do not have SLE. It is extremely rare, but possible, for a person with SLE to have a negative ANA. Many doctors completely discard SLE as a possibility if the ANA is negative.

It would be rare for you, your sister, and your two nieces to have SLE. More often we see different autoimmune diseases expressed in some members of the same family, like a sister with Rheumatoid Arthritis, or a grandmother with Hashimotos Thyroid disease, etc.

Here are the eleven criteria:


Malar Rash: Rash over the cheeks, sometimes referred to as the butterfly rash due to its shape

Discoid Rash: Red raised patches

Photosensitivity: Reaction to sunlight, resulting in the development of or increase in skin rash and / or other symptoms

Oral Ulcers: Ulcers in the nose or mouth, usually painless

Arthritis: Nonerosive arthritis involving two or more peripheral joints (arthritis in which the bones around the joints do not become destroyed) Serositis. Lupus arthritis is usually symmetrical — i.e. both wrists, or both ankles will be involved

Pleuritis or pericarditis: inflammation of the lining of the lung or heart

Renal Disorder: Excessive protein in the urine (greater than 0.5 gm/day or 3 on test sticks) and/or cellular casts (abnormal elements the urine, derived from red and/or white cells and/or kidney tubule cells)

Neurologic Disorder: Seizures (convulsions) and/or psychosis in the absence of drugs or metabolic disturbances which are known to cause such effects

Hematologic Disorder: Hemolytic anemia or leukopenia (white blood count below 4,000 cells per cubic millimeter) or lymphopenia (less than 1,500 lymphocytes per cubic millimeter) or thrombocytopenia (less than 100,000 platelets per cubic millimeter). The leukopenia and lymphopenia must be detected on two or more occasions. The thrombocytopenia must be detected in the absence of drugs known to induce it.

Antinuclear Antibody: Positive test for antinuclear antibodies (ANA) in the absence of drugs known to induce it.

Immunologic Disorder: Positive anti-double stranded anti-DNA test, positive anti-Sm test, positive antiphospholipid antibody such as anticardiolipin, or false positive syphilis test (VDRL).

Because nearly all SLE patients experience arthritis the doctors that see the most lupus patients are Rheumatologists. If you have joint pain, consulting with a Rheumy might clear up a lot of your questions.

Good Luck and Keep Posting,

K2


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