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Old 10-09-2007, 08:42 AM   #1
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SCLE questions

Ok it started back in April,I took my 3 young daughter to Florida for a week.Came back home to Kentucky and about 3 days after I returned home I got a horrible rash all over my arms.Just the part where hair is.Starting from the back of my hand,up to my shoulder. It itched really really bad and seem to get worse being in the sun.Went to a Dermi,they took a biopsy and some blood,positive for Lupus. Did more tests and it came back Lupus of the skin. They told me,protect me skin while being outdoors in the sun. Wear protective clothing,and sun screen. Which I have been doing since being told this is what it is. Also told me it would never go away,this will be something I will have to deal with for the rest of my life. They also told me I have a small % of it going into Lupus organ involvement.They also said the rash will leave behind scars,as the rash that started back in April has left behind scars. They set me up with a Rheum in a different state because they share their patients,and there are not any of them here.

Went and seen him last Friday.Now I am even more confused.He informed me that this is SCLE,but it will go away with time. That the rash marks left by the rashes will also go away,and not leave scars. He also asked me what can I do to treat the rashes by making them go away. I explained there is nothing I can do to make them go away. I have cream to apply if the itching gets to bad,when I get a flare up.So he gave me 2 meds.One if a steriod for the itching when I get a flare up.And the other is Plaquenil. I was told that is the medicine they give lupus organ involvement patients? So why would he give me this medicine,when the lupus is not controlling my life. I do everything I can to protect my skin when I am out in the sun,and my flare ups dont bother me at all right now. I have had a few flare ups since April,but that only happens when I go outside and forget the sun screen..

So my question is,what doctor is telling me the truth? Will this SCLE go away with time? Will these scars on my arms go away with time as well?

I am 27 years old.

Last edited by jenny4480; 10-09-2007 at 08:46 AM.

 
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Old 10-09-2007, 11:32 AM   #2
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Re: SCLE questions

Jenny, the subsets of lupus are hard to explain. I'll try, but FYI, there are hardcover lupus books in most libraries & bookstores that could help. Look for Dr. Daniel Wallace and/or Dr. Robert Lahita. Also, you could try the SEARCH BOX (upper left of this screen).

SLE (classic lupus) is described in the "sticky posts" at the top of the thread list. To be Dx'ed, a patient must meet any 4 of the 11 SLE criteria, not necessarily all at once. And even SLE ranges widely, from mild to major organ threatening (meaning life-threatening).

Then there's SCLE, which is thought to be an intermediate form, between SLE and DLE. Two rashes are considered characteristic. One is annular (targetlike); the other is psoriasiform (looks like psoriasis but isn't). SCLE lesions do NOT scar. How serious SCLE is: 50% of people with SCLE actually meet 4 or more of the SLE criteria, but generally not the worst ones (say, kidney & CNS). The full range of problems seen in SLE can occur in some SCLE patients, but most people remain on the mild side. Anti-Ro is the autoanibody seen in most SCLE patients.

Then there's DLE, discoid lupus, the subset in which people have "only" scarring &/or depigmenting rashes, with perhaps some arthritis. Discoid rashes DO scar &/or depigment. A *small* percent of people with discoid lesions do progress to SLE.

You can't tell what degree of lupus a person has *only* by the type of lupus rash. Instead, the totality of symptoms & criteria is what defines the subset you have.

Also, as one of my drs. said so clearly, "Rashes cross subsets." His example: someone with SCLE is also "eligible" for butterfly facial rashes (associated with SLE) & for discoid lesions (associated with DLE). And I actually proved his point, by getting one single "discoid" scarring lesion.

Plaquenil is actually NOT for major organ-threatening lupus. It's in the mildest class of lupus drugs, for people with milder problems, INCLUDING PHOTOSENSITIVE RASHES. In contrast, people who do have major organ involvement must take steroids &/or immunosuppressants.

I was also told it would never go away. The rashes will fade, obviously, but the tendency won't. I wear hats with brims in addition to using sunblock, because I don't want scarring (discoid) lesions on my head that could cause permanent hair loss. I cover arms & legs, and avoid midday sun.

Don't let your drs. rattle you! The main thing for you is that only your skin is acting up now, right? And that you're under a rheumie's care & will be monitored? That's the prudent approach for your dr. and you to take, and is considered the "gold standard" for care.

Just give a yell if anything catches your eye here, OK? Bye for now, and take good care, Vee

 
Old 10-09-2007, 12:04 PM   #3
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Re: SCLE questions

Quote:
Originally Posted by VeeJ View Post
Jenny, the subsets of lupus are hard to explain. I'll try, but FYI, there are hardcover lupus books in most libraries & bookstores that could help. Look for Dr. Daniel Wallace and/or Dr. Robert Lahita. Also, you could try the SEARCH BOX (upper left of this screen).

SLE (classic lupus) is described in the "sticky posts" at the top of the thread list. To be Dx'ed, a patient must meet any 4 of the 11 SLE criteria, not necessarily all at once. And even SLE ranges widely, from mild to major organ threatening (meaning life-threatening).

Then there's SCLE, which is thought to be an intermediate form, between SLE and DLE. Two rashes are considered characteristic. One is annular (targetlike); the other is psoriasiform (looks like psoriasis but isn't). SCLE lesions do NOT scar. How serious SCLE is: 50% of people with SCLE actually meet 4 or more of the SLE criteria, but generally not the worst ones (say, kidney & CNS). The full range of problems seen in SLE can occur in some SCLE patients, but most people remain on the mild side. Anti-Ro is the autoanibody seen in most SCLE patients.

Then there's DLE, discoid lupus, the subset in which people have "only" scarring &/or depigmenting rashes, with perhaps some arthritis. Discoid rashes DO scar &/or depigment. A *small* percent of people with discoid lesions do progress to SLE.

You can't tell what degree of lupus a person has *only* by the type of lupus rash. Instead, the totality of symptoms & criteria is what defines the subset you have.

Also, as one of my drs. said so clearly, "Rashes cross subsets." His example: someone with SCLE is also "eligible" for butterfly facial rashes (associated with SLE) & for discoid lesions (associated with DLE). And I actually proved his point, by getting one single "discoid" scarring lesion.

Plaquenil is actually NOT for major organ-threatening lupus. It's in the mildest class of lupus drugs, for people with milder problems, INCLUDING PHOTOSENSITIVE RASHES. In contrast, people who do have major organ involvement must take steroids &/or immunosuppressants.

I was also told it would never go away. The rashes will fade, obviously, but the tendency won't. I wear hats with brims in addition to using sunblock, because I don't want scarring (discoid) lesions on my head that could cause permanent hair loss. I cover arms & legs, and avoid midday sun.

Don't let your drs. rattle you! The main thing for you is that only your skin is acting up now, right? And that you're under a rheumie's care & will be monitored? That's the prudent approach for your dr. and you to take, and is considered the "gold standard" for care.

Just give a yell if anything catches your eye here, OK? Bye for now, and take good care, Vee
Thank you for taking the time to writing be back. You are helping me understand what I have and what I need to do to protect myself.

First off this Rheumi told me I would never get any answers to my questions from research online nor with books.This is a very rare form of Lupus I have and there has been very few studies done on this. But as the days go by and talking with others with this,and learning how to word my questions is helping answer several questions I have/or had..

Second off,he told me it WILL go away with time ,he feels its something I will "grow out" of..But my dermi is saying something completely different..

Third off,since all this started back in April I have noticed alot of changes in me. Such as....

1.stomach problems,constipation,diarrhea,nausea,lo ss of appetite (similar to IBS)
2. dizzy spells,vertigo spells ( been having vertigo since 2002)
3.headache and migraines. (since my teenage years) (I am 27 now)
4.mood swings
5.being really tired at times,can barely get out of bed (but thats not every day,comes and goes)
6.over all feeling like crap (is not like this all the time,it comes and goes as well).
7.when I get my period symptoms are at their all time worse.


My dermi does not seem to think its Lupus related,but it didnt start until after I found out I had this type of lupus..

I also had my thyroids removed last year,so my Rheumi seems to think this is thyroid related and not lupus related either.But I am sure I would have felt these things going on way before now..

As for the rashes I have/or had. The ones I had back in April,left behind what appears to be scars. I can see lil white or light pink marks where the rahes once were..(they remind me of burn scars).But my rheumi seems to think they will not scar forever and that they will go away with time as well..

 
Old 10-09-2007, 07:19 PM   #4
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Re: SCLE questions

Jenny, Hmmmmm! Some of your rheumie's comments really don't make too much sense to me either! For instance, I don't think SCLE is so very rare that you can't find info on it. Yes, it's rarer than the SLE & DLE forms. And, no, it doesn't have its very own book.

But you should picture the SCLE "subset" of lupus as a smaller circle lying within the larger circle of SLE. Smaller, because in SCLE, the statistical odds are that fewer things are likely than in SLE. Similarly, DLE can be viewed as a "subset", too. Therefore, if you were to read up on lupus in general (Dr. Wallace, for instance), you'd find at least a short section on the defining features of SCLE.

You know, looking back, I think it was my city drs. who used these analogies & words. The dermatopathologist who did my final skin biopsy used the word "subset", to help me visualize SCLE within the broader world of all lupus.

You've really had a lot of things going on since April. Are you actually *taking* the Plaquenil? If so, what dosage daily? Could you have gotten more sun than you realized during the summer? (I ask because SCLE patients are thought to be typically extremely photosensitive.) Have you had follow-up appointments, updated bloodwork done, etc? Have you told your rheumie you're feeling worse instead of better?

I was told my chances were good for getting my chronic problems under control. I still have flares, but lesser ones, and consisting of only pain & fatigue. And I haven't had a new rash in over 7 yrs. Maybe that's the sort of thing your rheumie was TRYING to convey? That, with treatment, your rash & other problems should recede?

Anyway, I hope you keep posting. It's such a complex subject, and I hope you feel a bit better just knowing you've got company now. Hang in there, OK? Bye for now, Vee

 
Old 10-09-2007, 07:37 PM   #5
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Re: SCLE questions

Quote:
Originally Posted by VeeJ View Post
Jenny, Hmmmmm! Some of your rheumie's comments really don't make too much sense to me either! For instance, I don't think SCLE is so very rare that you can't find info on it. Yes, it's rarer than the SLE & DLE forms. And, no, it doesn't have its very own book.

But you should picture the SCLE "subset" of lupus as a smaller circle lying within the larger circle of SLE. Smaller, because in SCLE, the statistical odds are that fewer things are likely than in SLE. Similarly, DLE can be viewed as a "subset", too. Therefore, if you were to read up on lupus in general (Dr. Wallace, for instance), you'd find at least a short section on the defining features of SCLE.

You know, looking back, I think it was my city drs. who used these analogies & words. The dermatopathologist who did my final skin biopsy used the word "subset", to help me visualize SCLE within the broader world of all lupus.

You've really had a lot of things going on since April. Are you actually *taking* the Plaquenil? If so, what dosage daily? Could you have gotten more sun than you realized during the summer? (I ask because SCLE patients are thought to be typically extremely photosensitive.) Have you had follow-up appointments, updated bloodwork done, etc? Have you told your rheumie you're feeling worse instead of better?

I was told my chances were good for getting my chronic problems under control. I still have flares, but lesser ones, and consisting of only pain & fatigue. And I haven't had a new rash in over 7 yrs. Maybe that's the sort of thing your rheumie was TRYING to convey? That, with treatment, your rash & other problems should recede?

Anyway, I hope you keep posting. It's such a complex subject, and I hope you feel a bit better just knowing you've got company now. Hang in there, OK? Bye for now, Vee
I did call them and tell them I was always feeling bad,but they said it was unlikely a cause from the lupus.And they are wanting my blood tests repeated once a year,unless they feel the need for sooner..No I have not started the plaquenil yet,I want to wait until I go back to the Dermi on the 22nd of this month to speak to them about my appt with the Rheumi. But when I do start I start off on 200mg a day. I am not sure what the Rheumi really meant about anything! LOL

 
Old 10-09-2007, 07:38 PM   #6
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Re: SCLE questions

Jenny, I didn't realize when I posted earlier that you hadn't started the Plaquenil. FYI, it can take as long as 4 months to reach full effect. I hope you get your questions fully answered by your drs.---and hopefully try it. It's considered a pretty safe drug. FYI, it's helped me a lot. See you later, Vee

 
Old 10-09-2007, 07:40 PM   #7
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Re: SCLE questions

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Originally Posted by VeeJ View Post
Jenny, I didn't realize when I posted earlier that you hadn't started the Plaquenil. FYI, it can take as long as 4 months to reach full effect. I hope you get your questions fully answered by your drs.---and hopefully try it. It's considered a pretty safe drug. FYI, it's helped me a lot. See you later, Vee
I am sure I will start it once I go to my Dermi and talk to them about it all. I also hope I get things answered,as things are getting so confusing for me to understand whats going on in my body.Thank you ,you have much help to me!

 
Old 10-10-2007, 02:39 AM   #8
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Re: SCLE questions

Jenny, Your list of your problems since April, that your doctor's office said were NOT related to lupus? Yikes! These things can certainly happen in lupus. Your library or bookstore should have the Wallace book. Turn to the back index, look up these problems, and you'll see exactly what I mean. And while you're there, look up "subacute cutaneous lupus erythematosus" (SCLE).

While scanning lupus books, do NOT panic when you see everything that can go wrong, because only a little of it is likely to apply to you. And don't be alarmed that your dr. will test you at least once yearly: this is absolutely the right thing for him to do.

Some drs. truly have no communication skills. But in fairness to all doctors, they could talk for days & you might absorb only a smattering, simply because it's so NEW to you. Things CAN get better for you, truly. Drop in here when you can, OK? And hang in there. Thinking of you, Vee

 
Old 10-10-2007, 07:22 AM   #9
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Re: SCLE questions

When I called the doctor about my new problems,since being told lupus is what I have.She said the type of lupus I have has no symptoms but the skin rash. That most likely it is my thyroids hormones off balance. So I called my thyroid doctor ASAP! They did the test and it came back fine. I was not off balance. So I went to an appt with my Dermi and they said it could be a virus I had for this time.So after 5 days with nothing getting better,I went to the ER.They ran several different tests and called it a virus as well. So I went home and tried to wait it out.About 2 weeks later the symptoms got better.Then not to long after (about a month later) the symptoms came back.I have been up and down since the rash appear for the first time back in April. I have literally ran out of things this could be.

Dont get me wrong back some days I feel great! But others I find it hard to get out of bed. I have an appt with the Dermi the 22nd and ITS GOING TO BE A LONG visit to them! I am not accepting maybe a virus any longer. I am going to do some research on this med they gave me at the Rheumi.And hopefully when I start that I feel lots better..

I also read that IBS runs in lupus patients,and it worsens around that time of the month. Before all this started my periods were as good as they could be.Hardly any cramps,I had energy and most of the time I had no signs of my period until I "started". Now right before I start I feel sickly.I get cramps so bad,I literally double over!

I can not wait to get this all figured out soon,so I can get my life back!!

Thank you very much for taking the time to respond to me so quickly.Knowing you know exactly what I am going through helps in so many ways. And I will be going to the library today to find out about that book.Thank you!

 
Old 10-10-2007, 07:26 AM   #10
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Re: SCLE questions

Quote:
Originally Posted by VeeJ View Post
Jenny, Your list of your problems since April, that your doctor's office said were NOT related to lupus? Yikes! These things can certainly happen in lupus. Your library or bookstore should have the Wallace book. Turn to the back index, look up these problems, and you'll see exactly what I mean. And while you're there, look up "subacute cutaneous lupus erythematosus" (SCLE).

While scanning lupus books, do NOT panic when you see everything that can go wrong, because only a little of it is likely to apply to you. And don't be alarmed that your dr. will test you at least once yearly: this is absolutely the right thing for him to do.

Some drs. truly have no communication skills. But in fairness to all doctors, they could talk for days & you might absorb only a smattering, simply because it's so NEW to you. Things CAN get better for you, truly. Drop in here when you can, OK? And hang in there. Thinking of you, Vee

What is the title and the author of that book?

 
Old 10-10-2007, 06:46 PM   #11
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Re: SCLE questions

Jenny, The book I mentioned is "The Lupus Book", by Dr. Daniel J. Wallace.

In your library, look for the area with Dewey Decimal 616.77. In addition to the Wallace book, other comprehensive lupus books should be close by---like Dr. Robert Lahita, also excellent.

That dr. who says skin is the only problem possible in SCLE is flat-out wrong. In some people, yes, only skin is involved. But in a smallish percent, symptoms may extend thru the FULL RANGE of those seen in classic systemic lupus (SLE). Conclusion? This dr. is years behind. The gifted doctor who published the groundbreaking work on SCLE did so in 1978. That's almost 30 years ago.

Maybe the problem is one of wording. If someone with an SCLE rash meets 4 or more criteria, perhaps that person is classified as having SLE.

Or perhaps the dr. sees lupus in neat & distinctly separate categories. It's a lot more "fluid". A spectrum, not tidy little parcels.

Anyway... ever onward! Bye for now, Vee

Last edited by VeeJ; 10-10-2007 at 06:49 PM. Reason: added sentences

 
Old 10-10-2007, 09:46 PM   #12
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Re: SCLE questions

I did go get the book by Wallace and I am starting on it tonight.

So if I have 4 or more symptoms I may be told I have SLE? I knew this doctor was off on his information because my problems did not start when I had my thyroids removed,they didnt start until after I was told it was lupus I had. I am going to ask to be changed to a different Rheumi in that same practice. The problem is there are no Rheumi's here in my town of Paducah,that my Dermi feels comfortable about sending me to,so I have to go to Nashville,Tn every time I have to see one.But the upside Nashville is a huge city with alot of different doctors to choose from.

Thank you very much for all your helpful information and trust me you have been VERY helpful to me!

 
Old 10-11-2007, 02:57 AM   #13
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Re: SCLE questions

Jenny, Hi. How people with SCLE are formally classified is beyond me! I'm not sure there's a separate "medical code" (like insurers use) for SCLE. If there isn't, maybe it gets lumped into either DLE or SLE? You could ask your dermie, who ought to know the answer.

I hope Nashville isn't too bad a commute for you, but it makes good sense to do whatever it takes. I also have to commute to my rheumie---best move I ever made.

I'm glad you're getting a clearer sense of direction & developing options as to what to do next. There's nothing like having a plan! Makes one feel a little better already, huh? I was so pathetically clueless back when: you'd have laughed if you'd known me. Let us know how things are going, OK? All my best, Vee

 
Old 10-11-2007, 04:18 AM   #14
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Re: SCLE questions

Jenny, I forgot to clarify something. CRITERIA and SYMPTOMS are not the same thing.

The American College of Rheumatlogy CRITERIA are specific & rigid. (See them in the "sticky post", or locate them in a lupus book.) People with SLE could have any number of SYMPTOMS. But to be Dx'ed with *SLE*, you must meet 4 or more of the ACR *CRITERIA*.

And how the "subsets" fit in? People with *SCLE* may meet 4 or more CRITERIA (but mostly not the toughest ones), or they may meet fewer. People with *DLE*presumably meet fewer.

I hope this makes sense! Kinda sorta. Bye, from Vee

 
Old 10-11-2007, 08:52 AM   #15
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Re: SCLE questions

The trip to Nashville is not at all bad for us.It is 2 hours from home,and we have 3 small daughters,2 of which are in school.So its complicated at times but on the upside. I love Nashville,so we have no probems turning that negative into a positive! I make my appts on Fridays so then we have the weekend to stay and relax! So its not at all bad.But like you said going to the bigger cities is in a way better.

It really has helped me out in more ways than one joining this board and meeting you..I now not only know what questions to ask but I now know HOW to ask them,which makes a huge difference..I feel alot more confident now in dealing with this head on..

 
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