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Old 07-30-2009, 08:31 PM   #1
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weebee wobbles HB User
should I take Plaquenil now or wait?

Hi I'm new here. I've just spent the last couple of hours reading over the posts. I am so confused I don't know what to do! I will try to make this as short as possible but it will probably end up long anyhow. (grin) Here goes. 3 1/2 years ago I had a tick bite & I got a for sure bullseye. 3 days later got sick as a dog. nausea, joints aching, fever, heart palpitations,etc...etc... Went to my then GP. He took blood to check for Lyme. But went ahead and treated me for Lyme. My tests came back negative. After being treated. I felt better but would have these strange episodes of dizziness, joint aches from time to time & feeling awful. a few months later my youngest son who was 33 years old passed away & about 1 month after that my upper back got these purple blisters on it & they popped & Have made these awful sores. Some are small & some are large. I just tossed it off as being some sort of stress do to the death of my son & I let it ride. Then 9 months later my oldest son died at age 36. That is when I started loosing my hair. & I don't mean a lil bit I am talking most of the hair on the top of my head is now gone! The only thing left is white scaly crap that I scrub off but it returns in the same day. I finally went back to my same GP then & he took a skin plug from one of the sores on my back because they would not heal. He was afraid I had skin cancer. The tests came back negitive for skin cancer but at the top of the lab page it said,"Hypertrophic Cutaneous Lupus Erythematossus" underneath that it states,"Correlation with clinical and serologic findings is needed". So then my GP took blood & sent it off. It all came back negative for Lupus! Yeppiee I thought! So from then until about a month & a half ago. I would still fell real bad off & on. & I still have the same gross looking sores on my back & my hair is still falling out. It's been 3 1/2 years now. Then a month & a half ago I again found a tick on me. & again, 3 days later got sick a dog with the same old stuff but worse. I told my husband I thought I might have Lyme again. I went to my "new" GP He saw the tick bite & started treating me along with taking blood & sending it off. In the mean time I had made an appointment with a dermie about the sores on my back & stupid me took along my Lupus papers from the first plug lab work. All she did was look at the first heading on the paper & said yep U have Discoid Lupus. I want U to start taking Plaquenil after U go have your retinas checked. I left there wanting to kick myself for letting her know about the previous lab work a couple of years earlier! I really wanted her to do her on tests. So... (I'm really sorry this is so long but I really need U to tell me what U think.) Ok , My GP gets my blood work back & calls me in. I have tested POSTIVE for BOTH Lyme & get this Rocky Mountain Spotted Fever!!! No fooling! Ok so he rushes and makes me an appointment with an Infectious Disease Specialist. But that doctor is on vacation & wont be back until Aug.6th. Oh I forgot! LOL in between all this I went back to the dermie & made her take a plug of her own & send it off & told her I would not take the Plaquenil without a new plug test. She called me yesterday & said it came back the same as the first one a few years back! Now keep in mind. No one has done any new bloodwork for Lupus on me. Ok here is my question. Should I wait to start taking the Plaquenil until I see the Infectious Disease doctor or what? I have read that both Lyme & Rocky Mountain can mimic Lupus! What should I do? If I start taking the Plaquenil & it turns out that I dont need it will it hurt me? I am a very healthy & very active 51 year old female. The only meds I take are zyrtec! oh I almost forgot. I have to go back to the dermie tomorrow to have her remove the stitches from my plug she took. I will insist on a copy of my Labwork. I have a copy of the first one from 3 1/2 years ago & I dont see anything in there about any finding like I have read in the posts. the only thing I read was... ANA/Antinuclear Antibodies Direct 24 AU/ML. What does that mean? Now the the copy of the tests my GP got from the Lyme & Rocky Mountain was 6 pages long with every lab work up U can imagine! It was a good one! So should I start the meds now or wait? & again. I am so sorry this is so dang long. It could of been a lot longer. I left a lot out. Thanks for any help U folks can give! p.s. every day I am getting sicker & sicker! I am not use to this! it's awful! By the way.. I am not sun senitive. The only place that ever burns on me is my ears. Help!

 
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Old 07-31-2009, 07:42 AM   #2
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Re: should I take Plaquenil now or wait?

Hi. I'm obviously only a patient, but it's my understanding that you can have cutaneous lupus---discoid, hypertrophic, etc.---without having positive serology. In contrast, people with SLE (*systemic* lupus) almost always have positive ANA, and (I think) aee almost always positive for some more specific circulating autoantibody(ies) as well.

I don't know what an ANA reading of 24 means, whether that's considered positive or negative. You should definitely ask the dr. who ran it! But ANA is considered ONLY a "threshold" test, because it's positive in a variety of conditions. You should ask if it can go positive in Lyme or RMSF (sorry, I don't know, but if I read something somewhere, I'll post more).

But given that multiple skin biopsies suggest a lupus rash, I'd think that your specialists ought to run *more specific" autoantibody tests. (Maybe they did already?) These look for SPECFIC autoantibodies & complement levels, such as anti-ss-DNA, anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, antihistone, anticardiolipin, rheumatoid factor, C3, C4, CH50, etc. (In his lupus hardcover, Dr. Daniel Wallace covers all these. In fact, he covers EVERYTHING. Most libraries & larger bookstores stock his book. And Dr. Robert Lahita is another helpful author to look into.)

But whether or not ANA = 24 is positive, it IS possible to have a form of lupus. Here's why. Think of lupus as a very wide spectrum, with "subsets" (subgroups) that blend & overlap with one another.

At the mild end is skin-only, discoid lupus, which features scarring &/or depigmenting rashes plus (often) fatigue & arthritis. Serology is typically negative in this subset.

Then, in the middle, picture subacute cutaneous LE (SCLE), which typically features nonscarring rashes and positive anti-Ro. ANA is positive only about 2/3 of the time. Patients can fulfill less than 4 *or* more than 4 of the criteria for systemic lupus. Severity in SCLE ranges from mild to organ-threatening, but it's believed that most patients remain on the milder side. Two rashes are common: SCLE psoriasiform (looks like psoriasis but isn't) and SCLE annualr (looks like a target); and neither tend to scar or depigment. People in this group are also "eligible" for discoid scarring lesions and malar (butterfly) rashes.

Then picture SLE = "classic" lupus. To be Dx'ed with systemic lupus, you must meet 4 or more of the ACR criteria, not necessarily all at once. The criteria are in a "sticky post" (permanent info post) at the top of the thread list. SLE can range from mild to extremely severe.

I imagine it's possible to have all 3: lupus in some form, Lyme & Rocky Mountain Spotted Fever.

It's my understanding that the most "effective" punch biopsy also includes *immunofluorescent stain tests*. This is because the microscopic findings for lupus rashes are SO CLOSE to those for some other rashes. But with a LUPUS rash, these additional stain tests can light up in a way that's seen ONLY in lupus, thus proving "for sure" that it's a lupus-specific rash.

I'm curious what your tick bite looked like. I had years of targetlike SCLE rashes. Nearly every dermie I saw thought the rings could be tick bites. BUT I never tested positive for Lyme or RMSF. Obviously your testing positive for Lyme & RMSF puts you in a far more complex situation! I honestly can't say whether starting Plaquenil before you see the Infectious Disease specialist is a good idea (sorry!) because I'm woefully DUMB about how these two are treated.

Honestly, in your shoes, I'd assume that I AM photosensitve & guard religiously against the sun---at least until I learned more. If it IS discoid lupus---I'm not sure whether YOU'RE sure???---then typically sun is a no-no, to reduce changes of additional scarring, hair loss, etc. (Discoid lesions can destroy hair follicles.)

I'm not sure how your earlier bites were treated. This is out of left field---but some people in the general population react horribly to antibiotics, with an alleric-like reaction. And some people with LUPUS react even more horribly. Certain sulfa-based antibiotics can actually induce lupus in some people, or induce flares in people who already have lupus. Same goes with certain heart & BP meds, etc.

My heart goes out to you, for everything you wrote. You have so much going on, on so many fronts. Please accept my sincere condolences on the loss of your sons. I very much hope you keep posting here & find some solace with us. We're always here to listen. Thinking of you, Vee

P.S. I'm ONLY a dumb patient, so please take eveything above in that light.
P.P.S. I'm sorry above is so convoluted. I didn't know where to try to start.

 
Old 07-31-2009, 09:21 PM   #3
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heidiclouser HB User
Re: should I take Plaquenil now or wait?

Thanks VeeJ for the comprehensive answer. I have subaccute cutaneous lupus with depigmentation. My rash is mostly controlled by the plaquenil although I'm a long time prednidone user. I do meet the criteria for SLE too. I also have scleraderma, FMS, sjorgren's, raynauds and managed to get lymphoma from immunosuppresants. Back to the original post.....

If I were you I would dump your current GP and find someone who knows alot about lupus....usually a rheumy. If you have a research or medical center nearby you might start there. Most doctors can't diagnose lupus. Many lupies have spent years running from doc to doc until someone finally figures it out. And get the Wallace book as a reference.

I wish you well on your journey.

 
Old 07-31-2009, 10:06 PM   #4
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Re: should I take Plaquenil now or wait?

weebee wobbles, I found some info hypertrophic lupus. First, one account said ANA can be positive. But other serologic findings---meaning specific autoantibodies, etc.---are possible, too, so what Heidi wrote about seeing a rheumatologist is very sound advice.

Hypertrophic is apparently pretty rare, seen in less than 2% of so of people with lupus, so that's yet another reason for seeking more sophisticated help! Another reason is that the rash can be difficult to control. There are apparently other drugs in addition to Plaquenil that are sometimes used to suppress the unique skin problems seen in this rash.

Even when bloodwork has been done & come back "normalish", good specialists will do repeat bloodwork on a regular basis, to make sure nothing new or bigger is rearing its ugly head.

If you can't locate a specialist quickly, since your appt. with the infectious disease doctor is right around the corner, maybe he can suggest a really good rheumie. Hopefully they can then team up and work thru your multiple problems & the multiple possibilities.

Did your dermie say anything about sun? If you weren't told one way or another, I'd call & ask the dermie, if I were you.

You could start a list of questions to take with you to the infectious disease specialist and a chronological list of the events you described in your post. And I hope others chip in soon with more suggestions of things to jot down. Post more when you can, OK? Thinking of you & sending best wishes, Vee

 
Old 08-01-2009, 03:06 PM   #5
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Angel MJ HB User
Re: should I take Plaquenil now or wait?

weebee wobbles ***big hug***
you have got very sound advice in the prevoius replies so just a little support!

let us know how it goes!

 
Old 08-04-2009, 10:42 PM   #6
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weebee wobbles HB User
Re: should I take Plaquenil now or wait?

Hi All. I really want to thank the ones that replied to my post. I really am scared about all of this, just like I'm sure all of U were too at first. I have so much to learn! The last few days I have been reading everything that I can get my hands on about Lupus. & U know. After reading. I just very well may have it! "sigh" Oh. I do want ya'll to know that I did go to our Barns & Nobles here & they didn't have the book in by Dr. Wallace. But I did order it & it should be here in about 9 days. (soft smile) For the person who said they wish they could see the tic bite I have. (sorry, I don't recall who said that) I would love to show it to U but, don't forget that my GP took a plug out of it & sent it off to the Infectious Disease Control Center in Columbia, S.C. so if I did send U a pic it would be of a nasty looking hole. But believe me when i say it was a perfect bullseye. Now I wouldn't mind sending anyone here pics of my back where I have those God awful sores all over my back. I know everyone one here keeps talking about rashes. I have never had any kind of rash except the time I was on an antibiotic that U are suppose to stay out of the sun with. That's the only time I have had a rash. The stuff I have had on my back and shoulder area for over 3 years now are very nasty looking sores. They itch & they bleed a lot & they do not ever go away. (cry) Sometimes they get a crust over them & sometimes they don't. Very strange things I have to say. Oh & sometimes they hurt pretty bad! If U remember in my first post I wrote that I was trying to keep it short. So only told ya'll some of the things that I thought were most important. But after reading so much about this. I have been having symptoms of Lupus for about 3 1/2 years. But then on the other note. It could be from the very first time I had Lyme. (Except for the sores I have) They both have so many of the same symptoms!! I do know for sure I absolutly without a doubt have Lyme & Rocky Mountain Fever right now. Everyone of the IgG/ RMSF came back positive. That is why my GP is sending me to the Infectious Disease Specialist. I will be seeing him this Thrusday. Now I must tell ya'll this. Friday I had to go back to my Dermie for her to remove the stitches from the plug she took to test for Lupus. If ya'll recall. I made her take a plug since she was only going by an old test I had done a few years back. Well the results came back & again. It was only one page!!! I asked her where was the rest of it? She asked me.. the rest of what? & I explain that I wanted to see all of it. & She said this is all they send her! I will be changing dermies!!! Anyhow, this time the paper said... "Interface dermatitis compatible with hypertrophic discoid lupus erythematosus (695.4) Then under that is ..... (Sorry this is long again!).... Comment: The histologic differential diagnosis includes the less likely possibility of hypertrophic lichen planus. The follicular plugging. the extension of the inflammatory infiltrate around blood vessels of the reticular dermis and the involvement of hair follicles favor hypertrophic discoid lupus erythematosus." Then under that it says & I am not lying here. Clinical Data and History: Discoid Lupus? Now why did they put a question mark there???! But anyhow I really do not know what all that means & the Dermie didn't want to take time to explain it to me. All she said was come back in 2 months & lets see how the Plaquenil is doing for U. So there ya'll have it. That is the results of my latest skin plug for Lupus. Now this past Monday I had to go back to my GP so he could take the stitches out from the tic plug. & I took him the paper that I got from the Dermi. He said that is means I could possible have discoid Lupus & then he asked me if she ran blood work on me since she got these results back. I told him No & he looked very upset & told me to come on. He walked me down to the lab & told them he wanted a full ANA done one me. He then told me he should have the results back by Wens. (tomorrow) So I guess I will know more tomorrow! This waiting & all this hurting & pain I am in is really starting to get to me! Arughhhhh! Oh & I forgot. He did say if anything shows up funny with my ANA test that he will be sending me to a Rheumatologist next. He really is a very good GP. I have only been going to him for about 8 months. He seems like he really cares & doesn't hesitate to send U to specialists. So I really just might have all three. Lyme, Rocky mountian & Lupus! I will keep ya'll informed. Oh I forgot to tell ya'll this besides the 100 other things I haven't told ya'll yet. I am the only one & I mean the only one in my family that doesn't have high BP or cholesterol, I do not have diabetes, & I do not have Thyroid disease & I'm not over weight. Everyone of my sisters & my brother all have those. Maybe mine is coming out as Lupus instead? Thanks for listening to me & being here. I have a feeling I'll be talking with ya'll more. Please, all of U take care. ~Hugs Weebee~

 
Old 08-05-2009, 07:33 AM   #7
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Re: should I take Plaquenil now or wait?

Weebee, hi. Re: the QUESTION MARK you saw on your skin biopsy... I had several come thru with a tentative tone. My last dermie explained why this can occur. He said microscopic findings for lupus rashes are tricky, because varying types look so similar under the microscope. Thus a lab pathologist can strongly suspect it's *some form* of lupus rash but *without* being sure of the exact kind---e.g., discoid, SCLE annular, SCLE papulosquamous, malar, tumid, etc. I *think* that means that the dermie, not the lab, gives the rash its final name, based on rash appearance, bloodwork findings (if any), overall medical findings, etc.

About the brevity of the biopsy report you got... I was also surprised at the single crummy page I got from my local dermies. But my last dermie told me labs keep additional detailed pages in their files. So it could be quite true that your dermie doesn't automatically get that full report sent to her...?

I'm glad your GP noticed that dermie hadn't done blood work & jumped right onto it. But I hope he sends you to a rheumie anyway, regardless of the result, because rheumies are the specialists best versed in ordering all the right tests, choosing labs that are the best at performing the tests, interpreting the results, etc. And from reading & from what I went thru myself, ANA alone isn't the be-all and end-all. Here are a few reasons why:

1. People with just "skin lupus" typically don't have a positive ANA, but they still have lupus to some degree! Worse, a small percent who start out as "skin-only" later progress to more "systemic" involvement.

2. People with *systemic* lupus most often do have a positive ANA, but not 100% (one exception that I know of is called Ro-lupus). Plus maybe ANA fluctuates as your flares rise & recede...

Because 3+ years is a long time for rashes plus other problems, I just think it would be great to see the rheumie sooner, rather than later. BUT please take all this for what it's worth, meaning I'm ONLY a patient. Anyway, I'm glad you found us here & hope you do keep posting! Drop updates when you can, OK? Bye, from Vee

 
Old 08-06-2009, 08:14 PM   #8
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heidiclouser HB User
Re: should I take Plaquenil now or wait?

You might want your dermie to send future specimens to a more sophisticated lab. I got my definitive dx from a lab in NYC.

 
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