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Old 06-05-2009, 01:17 PM   #1
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New here, Just diagnosed with TLE and have symptoms of SLE

HI everyone I am new here, and so confused about this all. I just recieved the news that I have TLE, yet I have alot of symptons of SLE that are not covered by TLE. All this medical jargon is confusing and if someone could help explain this all to me in plain simple terms I would be very Grateful.
I have yet to actually speak to my Doctor about this as he is in and out for the next several days to meetings in different cities, atleast he was kind enough to tell me via cell what is going on with me.

 
Old 06-05-2009, 04:41 PM   #2
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Re: New here, Just diagnosed with TLE and have symptoms of SLE

Teeha, hi. My understanding from reading, and from my rheumies & dermies, is that the type of rash one has doesn't define the grouping of lupus into which you fall. Instead, it's how many of the 11 ACR criteria you meet. (Those criteria are in a "sticky post" = permanent informational post; look at the top of the thread list.)

If you've met 4 or more (over time, meaning not necessarily all at once), you have systemic lupus (SLE). But even within SLE, there are degrees. You'll note that some criteria are much more profound than others. e.g., there's a BIG difference between joint pain or photosensitivity vs. renal and/or CNS involvement! If you meet 4 or more, including major organ involvement, your SLE is called "acute"; if no major organ involvement, "subacute".

AND there are lesser forms of lupus, sometimes called "subsets", that affect *mainly* skin, but very often with some lighter symptoms, such as fatigue and joint pain. The patient meets fewer than 4 criteria. Discoid lupus (DLE) falls here. And you'll sometimes see the term "cutaneous lupus" used to describe DLE and its variants.

I'm not sure where TLE falls, i.e., whether it's typically skews to DLE or SLE. But I *think* I've read it's akin to DLE. (Good question to ask your dr.!)

To read more, look in your local library for lupus hardcovers. One excellent author is Dr. Daniel Wallace; another is Dr. Robert Lahita.

Obviously, I'm only a dumb patient, so please take above for what it's worth! That said, give a holler if you'd like to discuss anything above. I hope you catch up with your dr. soon, for *professional* explanations, treatment, etc. Sending you warm wishes, Vee

 
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Old 06-05-2009, 05:43 PM   #3
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Re: New here, Just diagnosed with TLE and have symptoms of SLE

Teeha, hi again. I just found in my files notes I collected on the SCLE variant of SLE. One author considers *TLE* as a variant of *SCLE*. In English, that seems to position TLE (like SCLE) as typically falling in the intermediate range, between DLE & SLE. IF TRUE, that might explain why you have some SLE-like problems on top of the tumid rash...?

Hopefully that's the sort of "take" your dr. will provide, to help you to (hopefully) worry less. Lupus is a continuum, without 100% guarantees. But some of the subsets seemingly have "odds" of staying in a range---so if your dr. doesn't say, I think you should ask.

FYI, I have Ro-lupus, which skews to "SLE-lite", or "intermediate". My rheumie gave me odds upfront = pretty good for no major organ involvement. My mainstays are Plaquenil, sun avoidance, and OTC NSAID's. I still have fatigue & pain; but worse things like migraines, anemia, chronic GI & urinary problems, rashes, etc. pretty much ceased. (I LOVE Plaquenil!)

"Variants" can be tough: less info is available, and many drs. are incapable of recognizing them (that was my experience, anyway). So in my book, you're on track, as your dr. zero'ed in on a variant. GOOD!

FYI, Plaquenil & sun avoidance have helped me. Here's hoping YOU can do as well or better. Please don't panic: you need to hear more from your dr. about your "odds", treatment, etc. So hang in there! Vee

Last edited by VeeJ; 06-05-2009 at 06:11 PM. Reason: clarification

 
Old 06-06-2009, 02:49 PM   #4
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Re: New here, Just diagnosed with TLE and have symptoms of SLE

HI Veej,

I have been doing alot of reading on Lupus, and this one site listed a whole lot of symptons for SLE. To my knowledge I have none of the major organs effected at this time, But of the like 20-25 "other" symptons I have 14 of them. I also have read where SLE is a known cause of GAD or General Aniexty Disorder, which I was diagnoised as having back in Jan of 2006. going over all the symptons I have had most since I was a child and no one ever gave this a second thought. To that some have called me a hypercondriact (sp?) When I spoke to my Doc on the phone, when I got the diagnoises and we discussed some of the symtpons he agrees that I could have SLE, but also mentioned the SCLE. So we shall see he is going to do more extensive tests for this to find out. I do go see him this coming Mon. to get the stitches out from the biopsy on the face rash.
It is so wonderful to find a communtiy here for support like this as I dont have family near me, and I am the only one ever to have this disease in the family.I do know keeping a healty attitude and good spirits is a key to any sucess in medical conditions... so to all us out there with Lupus...what my brother told me growing up came true. I am my own worst enemy hahahahaha and when he returns from over seas I get to tell him mall about this. Will let ya know more as I See the doctors.

 
Old 06-07-2009, 03:25 AM   #5
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Re: New here, Just diagnosed with TLE and have symptoms of SLE

Teeha, I think it's QUITE possible that you can have a LOT wrong over many years, yet have "major organs" remain OK. That would describe me. I've only met personally one woman with same SCLE rash as I had. She ALSO had ever-worsening problems from early childhood. Her major organs also OK, but she tested positive for antiphospholipid syndrome (I didn't).

Did you see the "sticky post" about "alternative criteria"? One mentions anxieties like agoraphobia, claustrophobia, fear of heights, etc. As a child, I was "out there": loved flying, roller coasters, etc. By my late 20's, I was shaky & clammy in the subway, at the top of skyscrapers, even driving. But after Plaquenil, these episodes stopped cold. Hopefully you'll find same!

That's funny, your saying that you're your own worst enemy. I said same about myself. When I was Dx'ed, I didn't know whether to laugh, cry, or bang my head on the wall. But my history made so much sense finally.

As for having many symptoms of SLE? Well, yes. As explained to me by rheumie & dermatopathologist from major teaching hospital, SCLE blurs right into SLE. It's a "variant" or "subset", with some distinct rashes & some distinct blood findings. And even those can blur: a small group has SCLE rashes/bloodwork *on top of* the ones more typical of "classic" SLE. In SCLE, you're "eligible" for same range of problems seen in SLE; however, odds of major organ involvement, especially CNS and renal, while certainly there for SCLE, are believed to be lower than in classic SLE.

FYI, I think SCLE was only given its own name in the late 1970's.

Did you test positive for any autoantibodies? Have you read that anti-Ro patients may be the most photosensitive? And that people with lupus are "eligible" for multiple kinds of rashes? (I had all SCLE nonscarring, then got one big "discoid", on my face, naturally.) Only mentioning that in case you haven't started using sunblock, wearing hats, etc. If you haven't diiscussed sun with your dr. yet, please do. You do NOT want scarring lesions, permanent hair loss, etc.

I hope you keep posting here! It's obvious you've read widely & have much to share that could help others as they struggle. And let us know how your additional tests go, OK? Bye, with best wishes, Vee

 
Old 06-07-2009, 09:43 AM   #6
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Re: New here, Just diagnosed with TLE and have symptoms of SLE

hey VeeJ,

REad the 2 sticky notes at top, the one about the other disease I only have headaches which is also a part of the sle or scle. MY first noteable headcahe was at age 18 it was a sinsus headache so bad I could not lift my head off my pillow to call work. My mom had to call for me. Since then I get tons of stress/tension, sinsus, and then Mirgraines. A mix of tylenol, motrin and tylenol sinsus and lots of sleep in the cool dark room kicks of migrains.
the pics sown about the rashes still do nt look like the one have specifically. No butterfly rash across the nose. Frankly one doc told me it looks exactly like the yeast infection us women get you know where. I was getting it on my cheeks..statrs off looking like a pimple or two then explands out to encompass most of the cheek area and is real itchy and puffy like. This is the first time ever I had it only one the one cheek. Hair lose I have on my legs no less, strange but true. I have a good size area on my both legs where hair just stooped growing for no real reason. I never thought about it other then ..oh boy less to shave. ANyways will let you know whta the doc says tomorrow etc
have a good day
Teeha

 
Old 06-08-2009, 01:14 PM   #7
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Re: New here, Just diagnosed with TLE and have symptoms of SLE

Hey VeeJ,

Just got back from the Dermatologist and went for my blood work today. He is doing a cbc, chem14(complete metabolic panel),esr,ana,anti ena panel, anti rnp antibody, anti ssa antibody, anti ssb antibody, anti ds antibody and a G6PD for starters. He prescribed Planquenil which I am to start taking when he calls me with the results.so will wait to pick that one up. and also a cream for the tumid rash. I was reading on te other post your reply about the lupus rash and and going to check out the 2 types listed there that you put. But the rash associated with the TLE on the face does itch like crazy also. MAybe the rash itself has another moe specifc name hat you found in research that I did not. Anyways the more info we have the better armed we are to be treated, mentally if not any other way. Dr. did say he was concerned with a few of the more serious symtons I have and also is going to send me every 6 motnhs for eye check ups. Geesh as if once a yr is not bad enough due to family history of glaucoma. More later as results come in.

 
Old 06-08-2009, 04:18 PM   #8
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Re: New here, Just diagnosed with TLE and have symptoms of SLE

Teeha, sounds like you're off & running. FYI, Dr. Daniel Wallace discusses Plaquenil at some length in his lupus hardcover. I was *greatly reassured* by what he wrote before I started it. You could find the book at libraries & larger bookstores. (And Dr. Robert Lahita is another fine rheumie/author.)

My rheumie also requires me to have a "field vision" test twice yearly. All you do is stare into a machine, one eye at a time, and click a little clicker when you detect a red flashing light.

Seems like your dr. ordered the usual tests---probably urinalysis also? And did dermie discuss sun protection/avoidance?

Dunno about the "itchy" issue... While the lit suggests very few lupus-specific rashes itch, I think *you're* the best judge of whether you're itchy! Hopefully you can get it to cool down quickly.

I'm sorry about your Dx (who wants this stuff?!), but it's good that you're being thoroughly checked out: that's how it should be done. Post updates when you have time, OK? Meanwhile, take good care. Best wishes, Vee

P.S. I haven't seen anything else on tumid rashes, but if I find anything new & interesting, I'll post it.

Last edited by VeeJ; 06-08-2009 at 04:24 PM. Reason: spelling

 
Old 06-08-2009, 04:38 PM   #9
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Re: New here, Just diagnosed with TLE and have symptoms of SLE

Hey VeeJ,

Yes he will do a urinalysis also. He told me to stay out of the sun as much as possible, which I do already. the Doc requested to have results faxed to him within 24 hrs..I assume once they r done as the lab tech freaked when she seen that note lol. I tols her he means ASAP when done do not hold off on faxing get them done and to him. simple no worries. should know something soon. will keep ya udated. thanks VeeJ.

 
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