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Scared about lupus

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Old 07-12-2007, 09:22 AM   #1
Join Date: Jul 2007
Location: Mansfield, OH United states
Posts: 1
nbc7911 HB User
Scared about lupus

I am new to this this forum thing. I have never done it before, however I'm scared and frustrated. So I'm going to talk. My ana came back positive, however my rheumy wont accept it because he doesn't trust the place where it was tested. My new test results will be back friday (tomorrow). Okay in 1995 at the age of 15 I got a rash. I went to the derm and he said it was PMLE. I get the rash every summer. It occurs on my cheeks. forehead, forearms and shoulders. It looks kinda red brown and white. The rash is really bad this year so I went to my doc for some prednisone, it didnt work. I have been feeling very bad these past two months. No energy, extremely bad headaches, puffy eyes with stringy mucous and as bad as I hate to admit I think depression. In 2005 when I was preganat with my second I have very bad panic attacks accompanied with agoraphobia. Also a very bad kidney infection. Ever since I have been feeling bad, I have had bad pain in my kidney (yes I know where my kidney is the pain was so bad I will never forget it) anyway it hurts most of the day with a few bad throbs and shooting pains that travel down my leg. Is this normal? I told my rheumy and he seemed not worried he said it could be scar tissue hurting me. I just dont believe it. I also had a bad ammonia taste in my mouth last week for about 5 hours, it never returned. I have no joint pain but I defintley feel like there is something wrong with me. Im scared about the kidney thing, really scared. Can anyone share some words of wisdom with me, I would greatly appreciate it.
BTW I am 24 white female

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Old 07-12-2007, 12:10 PM   #2
Senior Veteran
Join Date: May 2003
Location: Virginia, USA
Posts: 2,347
BarbaraH HB UserBarbaraH HB UserBarbaraH HB UserBarbaraH HB User
Re: Scared about lupus

Hi nbc,

Welcome! Sorry you need to be here and more sorry that your rheumie isn't paying attention to you. I have to wonder why he'd order lab work that then went to a lab he (or she) didn't trust. What's up with that?

The top 3 stickies on this thread have lots of excellent basic information about lupus symptoms, test interpretation, and such, so I suggest you read those and see what sounds familiar.

Has your current rheumie ever cautioned you about exposure to sunshine or considered sunshine as a cause of your rash? As you'll learn, summer heat and sunshine are a huge problem for many people with lupus. Sunshine makes the lupus symptoms of pain and fatigue much worse and brings the unwelcome rash. The impact of the sun can linger for weeks or months, too. Try limiting your time outside; wear clothing to cover yourself, SPF 45+ sunscreen, and a broad-brim hat when outside; and try to avoid being outside during the hottest hours of the day where you live (usually noon to 5pm Eastern time where I live). Try this for a few weeks and see if this easy step helps you feel lots better and lessens the rash. Your little kids can happily play outside early in the day or later in the afternoons.

Does your current rheumie care for lots of lupus patients? Not all rheumies are good with lupus. If your doctor has only a few lupus patients, you may want to find another rheumie - one who is more experienced with lupus than your current doctor seems to be.

As for your kidneys, drink lots of water unless there's a medical reason not to. Lupus can affect kidneys, but you're probably too young for that (I'm no doctor!). I'd think since you're having pain in your kidney area, you should at least have a urinalysis done with the notations to the lab that you might have lupus and that you have flank pain. I'd guess that would be a start to finding out if your pain has a detectable cause. Perhaps you need to see a urologist if the pain persists just because rheumies aren't kidney experts.

Lastly, ask for copies of all of your lab tests. You need to keep a file of those results just for the record. Any other doctor you see for these problems in the future will benefit from seeing those copies.

Wishing you well - Barbara

Old 07-12-2007, 01:27 PM   #3
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Re: Scared about lupus

Hello, nbc. Welcome! After reading your post, the first thought that came to my mind was whether you'd seen a dermie since age 15. Also, whether you are 100% positive that PMLE was the correct Dx to begin with.

I must sound cynical... But I had a long history of rashes, coupled with many other episodic problems going back decades. My local dermies biopsied my rashes repeatedly but came up with precisely NOTHING. I switched to a teaching hospital rheumie & was also sent to a dermatopathologist for one last skin biopsy.

Long story short: it turned out that I have a "subset" of SLE called SCLE, which stands for "subacute cutaneous lupus erythematosus". There are two unique rashes that are "specific" to SCLE. One is annular, meaning targetlike, which is the one I had, mainly on my upper arms & back. They started as red raised papules, then morphed outwards into perfect circles before expanding further, losing their shape and fading. They didn't itch, scar, or depigment.

But here's something on the *OTHER* SCLE rash that may hold particular interest for you. The SECOND type is called "papulosquamous" or "psoriasiform". One article I read on this form described the lesions as looking a lot like *PMLE*.

Obviously, I'm only a patient---but I wonder if it makes sense to revisit your rashes.

FYI, I tested positive for the anti-Ro autoantibody, which is the autoantibody seen most often with these two SCLE-type rashes. Do you know if specific autoantibody tests have been run, beyond the basic ANA, that is?

I was told that in SCLE, many people fulfill at least 4 of the "4 of 11" criteria for SLE, but that the odds of the worst problems seen in lupus (e.g., kidney and CNS) are thought to be lower in SCLE than in SLE. I also had some kidney & bladder problems that were painful (infections, stones, custitis, etc.) But pain may actually be a good (!) sign, oddly, in that the classic kidney damage seen & feared in lupus is painless, I believe...

I've avoided sunlight & taken Plaquenil for some years. What a difference. I still have low spells, but they are mild compared to my old bouts prior to Dx & treatment.

I hope this perhaps gives you some new thoughts to ponder & questions to pose. We're all looking forward to hearing more, when you have the time, that is. Meanwhile, I send my best wishes to you! Bye for now. Sincerely, Vee

Old 07-13-2007, 03:13 PM   #4
Join Date: Jul 2007
Location: chicago,il,usa
Posts: 4
tipima HB User
Re: Scared about lupus

Hi, just joined myself. I read your story, I was diagnosed 4yrs ago with lupus, I was 28 then, I have seen so many docs, it's unbelievable.I am so sick of being sick, I now have a really bad rash and was told by my doc that it was lupus related and I had to stay out of the sun as much as possible. I am so sorry that anyone else has to go through this, especially being so young. Just take care of yourself, I found that sugar really bothers me, I have change my eating habbits, I am now doing all organics, which not only benefits me but also the rest of my family. I am gonna start juicing and eating more raw veggies, I've read a lot about it, and it seems to have a lot of benefits. I figured, I've tried everything else, I might as well..., I am on so many different meds right now, it's scarry!! I am hoping that if anything, it will help with my energy, I know how you feel when you talked about being tierd all the time, it's crazy, it's frustrating, especially with kids. I keep thinking,"man my kids do not deserve this," I feel so sorry for them. I try so hard not to fall into depression, but it is so tempting. So all I can say is hang in there, our kids needs there mommies, no matter how sick or how tierd we get, they need us.Try not to get depress,I have learned to find my joy and my reason for living in my kids and my husband. Living with this desease has made me so thankful for healthy kids, I much rather it be me than any of them. Anyways, just wanted to let you know that there is sommeone else out there who knows what you are going throught, sorry for babling, take care of yourself.

Old 07-20-2007, 05:37 AM   #5
Join Date: Jul 2007
Location: cardiff
Posts: 3
rayhan HB User
Re: Scared about lupus

Hi tipima,
I have had lupus for 7 years and it affected my kidney s well , but i'm not making you tired by telling my story which if you want you can read it briefly in "does any one know " section.
I read your messege and noticed that you are trying something to wach your nutrition and search about lupus,that is grate !!!!!!!!!!!!!!
I didn't want to be a looser as well and try lots of different ways and found lots of information.
First about nutrition:
The fruits and vegetables are grate and continue it.
Drink 8-10 glasses of water per day to flush the toxins.
I cut off my red meat,sugar,tea,coffee(just drink herbal tea),white bread and pasta(eat brown one),whole wheat products(eat whole oats) and white flour products.
I have done yoga chi kung feet reflexology,indian head massage and energy healing and they are really helpful for flowing the energy in the body.
I can give you some sites address to take lots of information and hope because they are about 2 girls who have healed their lupus!!!!!!!!!!!!!!!!!!!
I think it is possible and you should change your way of thinking to possitive and change the stressful situation as well.
Hope to hear from you soon and take care.

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