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I'm scared...could this be lupus?

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Old 02-06-2006, 08:07 PM   #1
Join Date: Feb 2006
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hivesincali HB User
Unhappy I'm scared...could this be lupus?

Hi Everyone, this is my first time posting. I apologize in advance for the length. I am writing because I am afraid I could have Lupus and wanted to get opinions from people who has dealt with it. here is my background....healthy lifestyle all my life, healthy girl - no autoimmunity, no family history of autoimmunity. 1 1/2 years ago I was at someone's house who had two cats to (I am allergic and had the regular allergic reaction). Within days my immune system went into overdrive and started producing hives - chronic hives - that have lasted 1 1/2 years. Last Jan 05 I had a plethora of testing to see if anything was underlying and everything was negative, including the ANA (.4) and thyroid. I had no other symptoms other than hives. I figured it would just "burn itself out someday" like it says in the literature. Flash forward - I had a kenalog shot (steroid shot) to calm the hives this past summer '05. Things were looking better until I noticed strange bumps (small and painful if I pushed them) on my index finger shortly after the hives that hurt, but I though nothing of them. They came and went and, then reappeared I didn't really think about them. They almost seemed like underdeveloped warts under skin. Maybe around October I started noticing random joint pain in my knees. It didn't last long, and would come and go (both sides). It kind of lingered for month but lasted 15-45 minutes at a time. I also started noticing tenderness/soreness in both butt/gluteus muscles. This was more chronic - kind of always there, but worse at certain times, usually night. In the last month or so, the joint pain migrates around to a wrist occasionally, but usually knees and hips. There is no arthritis, swelling, stiffness - just pain - sometimes aches for 3-30 minutes, other times sharp shooting pain for a minute or so and then gone.

On top of this my finger starting to worry me as the strange rashes kept reappearing. One of the bumps was on a tendon on this finger pad and it hurt if I made a fist or pressed it. It was hard and looked like it was a growth on the tendon, but my doc said it was the same thing as the other skin things on the finger so he biopsied them both. While I waited 2 weeks for the results I started researching and wondered if I could have Lupus because of the joint and muscle pain, plus the fact that my immune system was on overdrive since the hives started (I never get sick anymore), then there was the random rash. I rationalized that the kenalog shot could have caused the skin rash, but it wouldn't explain the joint pain - plus the kenalog shot was 6 months ago and the rash kept returning in that whole time. I did have the kenalog shot in the butt, but 7 months later it shouldn't be sore!

Sorry this is so I go back to get my biopsy results for the finger. The pathologist thought "pernio," but "also possible, but less likely"...Lupus!!! I almost broke down in tears because I had vaguely suspected that but never told my doctor. The doctor ordered blood tests (another ANA) and I have to wait a couple weeks for the results. I am miserable - crying all the time and confused how this could have happened.

I don't have the fever, extreme fatigue, butterfly rash, "flu-like symptoms," mouth sores, and hair loss symptoms that are one the internet....on one hand I feel like I am a hypochondriac thinking I have Lupus from some daily (but fleeting) joint pains (that are not severe) and constant achy buttocks muscles and a finger thing. At the same time, the pathologist thought it could be and also I have no idea what else would cause the sporadic joint pains - I don't have any injuries - and also it says this disease develops "gradually."

Sorry this is the longest post of life. I don't know anyone with Lupus and do not know who to talk to about this to make me feel any better. Does anyone have any opinion on whether or not Lupus usually starts with such few symptoms like this over the course of 6 months? Would I have more symptoms by now if it were Lupus?

The only factor that puts me at high risk is that I am 30 and female, but no pregnancies, no family history of autoimmunity and negative ANA last Jan 05.

I REALLY hope they find a cure for all these autoimmune diseases soon!!! No one should have to deal with all this stress when there is nothing we did to bring on the diseases. We just walk down the street and - poof! - our immune system goes bizirk.

Look forward to any thoughts from any of you

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Old 02-07-2006, 05:18 AM   #2
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Re: I'm scared...could this be lupus?

Dear Michele,

The ACR "4 of 11" criteria are for *SLE*, meaning the *systemic* form of lupus. There are lesser forms, in which you fulfill FEWER than 4 criteria. The lesser forms, sometimes called "subsets", are DLE (discoid LE), SCLE (subacute cutaneous LE), DILE (drug-induced LE), and neo-natal LE. To find out more about these lesser forms, if you feel like doing some further reading: go to the "Resources" tab above, then into MedLine Plus, then drill down to Rheumatology & to lupus.

Another quick source is a series of articles that the moderators here allowed to be cited. See the "sticky post" at the front of the Board, the one about tests & test results. It has a slew of info.

About PERNIO: I *think* someone here also mentioned this rash a few months back. You could search this Board for "pernio", via the search box above.

I do NOT want to scare you unduly here, but I know from personal experience that early pathology findings can be meaningful. I was Dx'ed with the SCLE subset in 2000 (circular, nonscarring rashes mainly on torso & upper arms, plus plenty of other things going on, including anemia). I only found out at that time that my VERY FIRST BIOPSY suggested lupus, because of subtle cell alteration on the dermal/epidermal border.

Also, you stated that you never seem to get sick anymore. Did you used to? In what ways?

BUT, on the OTHER HAND, maybe what you've had so far will simply STOP, right where it stands (which is what I hope happens!). And just maybe these are things also seen in people who never go on to develop any kind of lupus. (But it is hard to make the mind stop churning, to be sure.)

You could always ask your drs. for more info. Questions like, (1) What was it in the pathology results that suggested lupus? If it was pernio, does "pernio" ever suggest lupus (incl. the milder subsets)? Can it exist "standalone", in the absence of a broader or developing problem? (2) Were autoimmune blood tests *beyond* ANA done? (In the subsets, ANA does NOT have to be positive.) (3) Should I avoid sun? (4) Are there any meds or supplements I take that maybe could have caused a drug reaction? ETC.

I hope others chip in soon, esp. someone who knows more about pernio. And I hope you stay here & continue to post---if nothing else, we are very good company to hang out with while gaining clarity.

All best wishes, and bye for now. from Vee

Old 02-07-2006, 04:31 PM   #3
Join Date: Feb 2006
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hivesincali HB User
Re: I'm scared...could this be lupus?

Hi Vee,
Thank you so much for responding.

First off I should clarify...when I say "I never get sick anymore" I mean that I never get common colds/viruses that most people get. Before I got chronic hives I used to get a cold maybe 4-5 times/year or so, and as soon as my immune system got revved up producing hives it fought off any virus as I never came down with anything. I feel like that is a sign that I am autoimmune as my immune system is overactive.

As for the ANA, I just gave blood yesterday so I will know in a week or so. He is testing me for rheumatoid factor, thyroid, lupus, and (not sure why but) hepatitis. Honestly, I can't read his writing, but he is testing for other autoimmune related tests. 40 tests total with 15 tubes of blood. I asked him "what if the ANA is positive, but I don't have lupus?" and he said "that is why we are taking these other tests to make it more specific."

I definitely don't have drug-induced or discoid lupus, but if I have this "cutaneous" kind that you have, could I still get joint/muscle pain? If I have Lupus it would have to be systemic because my joints and muscles are already involved. The only drugs I am on are allegra (antihistamine) and last kenalog shot in July. HE didn't think either could cause that skin thing. Although I did read on a kenalog website that as a side effect it can cause "lupus-like lesions on the skin." That might give some peace of mind if the shot wasn't so long ago and I didn't have muscle/joint pain.

Then this morning I woke up with mild nausea....I couldn't find it as a sign of lupus in my books, but never get it and don't have stomach problems. The joint pain is gone. I feel like my immune system decided to attack my stomach instead of the joints now. Is nausea a symptom or am I becoming paranoid? Also can you have "mild" Lupus where you never meet all 4 criteria or just stay with skin rashes and joint/muscle pain? What is the likelihood that this will progress to internal organs and give significant problems? Is there anything we can do to prevent that? I did notice that stress and lack of sleep over worrying about this made my joint/muscle pain worse.

Oh, as for the pernio, (which is gone since the biopsy, by the way)...First off it says it is cold-induced and these things started in the summer, so that is strange. My derm. thought that pernio was it's own thing and lupus was "less likely." (like it was either one or the other and he thought pernio as more likely) At the same time, I looked up pernio and lupus CAN be one the causes of pernio! So even if it's pernio it can still be related to lupus. I have the pathology report and it doesn't say why they though it was pernio or lupus. They just describe it: "papilary dermal edema and superficial and deep perivascular and periadnexal lymphocytic infultrate."

Thanks for your thoughts on this....I really appreciate anything I can get.
All the Best,

Old 02-07-2006, 07:05 PM   #4
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Re: I'm scared...could this be lupus?

Hi, Michele. A lot like you describe, some years back I stopped getting the regular vuruses that go around. And that DOES make one wonder, I agree.

Your dr. sounds quite thorough, right out of the starting gate, so to speak. I think it's good that he's looking through a very wide lens & quickly, too, by ordering a broad range of tests.

SCLE is actually considered the intermediate form of lupus. Its name is deceptive, esp. the word "cutaneous". Many people with SCLE score a "4" or more on the "4 of 11" criteria. While the full range of SLE problems are possible in SCLE, it's thought that the WORST problems occur less frequently (kidney & CNS being the worst). Within SCLE, about 1/2 cases are thought to be mild, and the other half more severe.

There are two rashes peculiar to SCLE, both tending to be nonscarring & nondepigmenting: (1) annular (circular), which in early bouts can look like big fat mosquito bites but then in later bouts tend appear, then evolve into circles; and (2) papulosquamous (looks like psoriasis but isn't).

And, yes, SLE can be mild, meaning no involvement of the "major organs" (kidney, CNS, heart, lungs, etc.)

I asked my rheumie what the difference is between the "level" of SCLE I have vs. mild SLE. Basically, my rashes (pure SCLE & no malar) & the number and particular ACR symptoms enable him to call mine SCLE (which my life insurer still had a major problem with, alas). But otherwise? Prety much the same ballpark. The treatment for what I've got & mild SLE is the same: an antimalarial is the DOC where no major organ involvement exists. And NSAID's for pain. I tried Celebrex & Vioxx, and perhaps luckily(!), found neither helped very much; so I'm back to OTC's.

I'm headed out of town for an uncertain length of time in a day or so. My dad had taken a downturn (Parkinson's & very old age...) So if you write more & I don't answer quickly, that would be why. Good luck with those test results & maybe more to the point, with how you are feeling overall, whatever is doing this. All best wishes, Vee

Last edited by VeeJ; 02-07-2006 at 07:18 PM. Reason: spelling & grammar

Old 02-07-2006, 08:04 PM   #5
Join Date: Feb 2006
Posts: 2
hivesincali HB User
doctor's comments....

Vee, I'm sorry to hear about your grandma got Parkinson's at age 70 and lived about 14 years more with it, but it is sad, I know.

Thanks for your thoughts. I talked to my derm. today and he thinks I am worried over nothing because I don't have the test results and thinks I do not have "any symptoms" despite the joint pains and muscle aches that come and go, which he thinks "can be anything." When I told him I am nauseous (the reason I called because I thought he should know and I did not know if I should take anything for it) he said "you probably have your period." Duh, like I wouldn't piece that together if I did. I told him I didn't and asked if it is a symptom of Lupus. He said "not at all" and that "everyone is nauseous because everyone has the flu now." Seemed a bit oversimplified, flippant and uncompassionate (not to mention his tone was rude), but thank God I don't have to deal with him much longer because he is not a rheumotologist. I also think he is incorrect as I looked it up and nausea CAN be associated with Lupus, according to some articles I read. He also said it is a "One in a Thousand chance" that if I had lupus it would affect my internal organs. I am not a doctor, but that does not correlate with what I am reading. I have read 1/2 don't have major organ involvement; I have also read that "most don't." But 1 in 1000? Not sure where he gets that....

Can SCLE involve joints/muscle aches or pains? What age is most common for it to hit?

Old 02-08-2006, 05:38 AM   #6
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Re: I'm scared...could this be lupus?

Dear Michele, I'm still home (waiting until 9:00 AM to make calls on dog boarding, Rx'es, ETC.), so I saw your post from last night.

SCLE can DEFINITELY bring on joint problems; actually, it can bring on *all* the same things SLE does. But as I said earlier, it's thought that the worst of those things happen less often, creating an overall "average" that is milder than SLE.

I've read that SCLE occurs less frequently than both DLE & SLE; the average age of *Dx* is about 43; it favors women of n. European heritage; 2/3 have a positive ANA; and 2/3 are positive for anti-Ro, with most of those also positive for anti-La.

Your best bet is to keep track of your symptoms (what, start date, end date). Write them down, even on a calendar that you can then toss into a drawer at year-end, in case you ever need to build a history.

IF things worsen but the visible symptoms remain mostly skin (meaning bloodwork normal, etc.), and you can't get anywhere with your current dermie, you could try another. Some people end up seeking out teaching hospital dermies & rheumies. Or a "dermatopathologist", who is both a dermie & a pathologist, and who does his own labwork.

But I hope you can keep chugging along as normally as possible, Michele, hard as that is when you are worried about these things. Post an update when you can, OK? Hang in there. Sincerely, Vee

Old 02-08-2006, 11:19 AM   #7
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Re: I'm scared...could this be lupus?

Hi Michele -

Sorry this is worrying you so much. I do know what you mean with blamo - you've got an immune system that's out of whack. What's up with that???

I'll throw in just a couple of things that came to my mind. I thought I didn't have any mouth ulcers either until my dentist saw them - they were there but didn't hurt and were almost too small to see. I had no idea they were there.

Many loopies feel better if they stay out of the sunshine - being out in the sun even for a short time just makes all of the fatigue, aches, and unpleasantries worse. If you notice that correlation between your time outdoors and how you feel, try staying out of the sun for several weeks and see if you feel better. My doctor said it was okay to go from the house to the car and the car to a shop or indoor work. It was okay to be in deep shade for a short time outside and not to plan a day at the beach. I wear long sleeves, jeans, and a hat with a wide brim when I'm outside. That helps a lot.

I was diagnosed as likely having lupus in the spring of 1999 and have done pretty well with just a few limitations. My major annoyances are fatigue and IBS-type issues. For the vast majority, lupus isn't problem it was even 30 years ago.

Wishing you well - Barbara

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