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marymk 12-19-2012 10:18 AM

waiting on referral
Sorry this is so long, so thanks to anyone for reading through it.

I'm waiting to get a referral from my GP - he's been hesitant to refer me anywhere, since my lab work has been mostly normal, but I'm pushing because I've been to him 5 times since September with no answers.

It began with a very red and a bit swollen rash on my cheeks - just under my eyes in August while on vacation out west - spent alot of time in the sun and just thought it was sunburn - even though I use sunscreen - it faded in about 8 days - and was only on that area of my face.

Then in mid September I got a rash on my face,nose and forhead that is looking a lot like the butterfly rash - it was at times itching,burning, tingling or at times just there.

I went to my GP - had two seperate does of Prednisone - each time it cleared up, until about 4 days off the meds, then it returned. I've had blood work for the usual CBC's and also kidney and liver function - all within range. Then I have a second round that included ANA,RF factor and ESR. My ESR was elevated, but he ANA and RF were negative - The lab report didn't state and values - just 'neg' so I dont know if they were slightly negative, or very negative - I was also on the Prednisone at the time.

Now it's December - still have the butterfly rash and realizing more sypmtoms - fatigue is getting much worse. I've always had some - now I can hardly function from late afternoon through bedtime. My finger, and knees are somewhat swollen and are stffl upon wakening, and then again at night. I'm starting to get headaches, my eyes ache, I've gotten sores on my ears,neck and scalp - they are small, but annoying.
Also - I'm hypothyroid and those labs tested fine. I had skin issues when I was first diagnosed as hypo - but this is different. I aslo have dry mouth, sinuses always seem irritated - I carry nose drops with me always, and I have had carpel tunnel, tendonitis,costocondrotis, anemia at various times over the past few years.
It seems that they should be able to find something - also my mom had Raynauds disease very bad (she's passed now from kidney failure), her sister died from liver disease, and of the other two surving siblings - my uncle has arthritis throughout his whole body, and is being tested for Lupus now, and my Aunt has fibro and had her spleen removed last year - as a last resort effort to help her very bad amemia - that they are not finding a cause for.

My fear at this time is that I am 54, and don't want to end up in 10 -15 years being undiagnosed and my health declining with no answers, as it seems my mon and her family have had happen.

Thanks to anyone who has read my plight.


ladybud 12-19-2012 11:32 AM

Re: waiting on referral
Mary, you are absolutely right to insist on a rheum referral. There are other tests that can be done to pin this down. One path to a diagnosis (sometimes) is a skin biopsy of the lesions on your scalp, etc. with immunofluorescent studies to look for immune complexes deposited in the skin layers. I would take a picture of my skin lesions and butterfly rash, perhaps on your cell phone, to show your Dr in case the rash or lesions are not there when you go. The more objective evidence you can show, the better, in trying to get diagnosed. You have an impressive family history that sounds autoimmune related. The fact your rash appeared after sun exposure is important. Your ANA could have been falsely negative because of the Prednisone and should be repeated off the Pred. Your elevated sed rate as well as symptoms indicate something is going on, so please don't let any Dr. just try to dismiss this. I would get a referral to a dermatologist as well for skin biopsy.

marymk 12-19-2012 12:07 PM

Re: waiting on referral

Thanks so much for your reply. I did have a dermatologist look at it when I started, and they thought it might be allergies, but since then I've had many other sypmtoms and my GP doesn't think it's an allergic reaction, but I am going to an allergist in January, so I can rule that out if needed. I also have a followup with the derm in January, so maybe a biopsy will be done, especially if this is still going on. The sores start to heal, but then I start to get new ones.

My husband actually told his rhuemy about this at his appt (he has psoratic arthritis), and they said to get a referral , so I'm working on that now. If my GP won't give me one, I think I'm going to ask the allergist, especially if nothing shows up there - I have a new saying now when I talk about going to a new doc - 'cure me or refer me'.
I now remember that my grandmother also had rheumetoid and hypothyroid, and my dad is hypo also and has arthritis - but I'm not sure what kind - he doesn't like to go to doctors unless he has to, so he just take aleve for it.

Thanks again.


VeeJ 12-19-2012 03:58 PM

Re: waiting on referral
Hi & welcome. I'm sorry for your problems. I also think you're wise to see a rheumatologist. I'll add a few odds & ends I learned the hard way.

It's possible to have lupus without a positive ANA. In one "subset", discoid lupus (cutaneous-only lupus), people meet fewer than 4 of the ACR criteria and are almost always ANA-negative. BTW, those ACR diagnostic criteria are in the "sticky posts" (permanent info posts) just above the user threads.

It's also possible to have *systemic* lupus with a negative ANA, but this is very rare, perhaps only 3-5% of all diagnosed lupus. In this subgroup, anti-Ro is positive but ANA remains negative. The rashes seen in this subset tend to be the two so-called "SCLE" rashes.

ANA can fluctuate as flares come & go. Plus there's a point in time for most patients that ANA turns positive for the first time! So no matter what ANA was the "last time", if you have symptoms, it makes sense to have a full round of new tests, including more specific tests for the "ANA subtypes". Examples of the subtypes are anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, antiphospholipid, etc. (There are a bunch.)

The gold standard for skin tests is the "lupus band test" (LBT), which may be done by a really good dermatologist or by a dermatopathologist. (Dermatopathologists tend to be found at the larger teaching hospitals; they're both dermatologists and pathologists, thus can do their own labwork.) In the LBT, the punch is examined under a microscope for cellular changes. Next---and this is part that can prove lupus---the punch is subjected to immunofluorescent stain tests that can very often (not always) light up in linear bands considered virtually diagnostic of lupus. What the stains are lighting up: depositis of "immune junk" that have been deposited between the dermal & epidermal layers. This deposition is considered unique to lupus.

There's also a "sticky" on skin rashes in lupus. While only two rashes "make" the ACR criteria, there are actually a fair number of lupus-specific rashes. And if you have a lupus-specific rash, well, you do have lupus to some degree, but not necessarily systemic. (The "degree" you have is determined by how many of the criteria you meet: fewer than 4 vs. 4 or more.)

Photosensitivity is also a criteria. In people with lupus, sun can induce rashes, and/or cause overall symptoms to flare.

I'm glad you found us here! Sending warm wishes, sincerely, Vee

marymk 01-16-2013 08:38 AM

Re: waiting on referral
Thanks for responding - since my posting, I have gotten a referral to the rheumy, but it's not until Feb. In the meantime, I've seen an allergist - at my GP's suggestion. They still seem to think it's allergy related - although I would be surprised if it is. I know a diagnosis of Lupus takes a long time, so I'm going along with my PC's suggestions, to rule out other things it might be.

The allergist took blood, and that won't be back for about 3 weeks. Interestingly - she ordered CH50, C3 and C4 - along with the usual allergy items. I know the complement tests are done for Lupus - so maybe I'll get some answers from those.
The allergist also wants to do patch (skin) testing for other allergins - but I know this is a pain in the neck - having all the patches on your back for a week, so I'm trying to avoid this if necessary.

In the meantime, I have started to have different syptoms sometimes even feeling a little better - but then have replapses -now fatique and my joints are really gettting into the picture - mostly hands, wrists,neck and shoulders. I'm not on any medications except zyrtec and a steroid ointment for the rashes.
Another note - the rashes have also developed bilaterally below my neck area -such as on the sides of my upper chest and rib cage - and they are not what I'd call real rashes - just a redness that appears, and starts to itch and then subsides for a while - then returns the next day - like on a schedule.

I am really feeling the frustration that alot of members here have gone through - and although I really don't want to have Lupus - or anything else serious, I do want an answer to what's going on, so I can move ahead, get treatment, and hopefully start to feel better. I seen too many stories of those who took so long for a diagnosis, and could have been treated so much sooner - I am hoping that doesn't happen to me.

thanks for listenting

VeeJ 01-16-2013 03:03 PM

Re: waiting on referral
Hi, marymk. I think C3, C4, and CH50 are also used to screen for angioedema (a sort of hive-like skin swelling), RA, vasculitis, etc. It would be nice if HIGH suggests one group of possibilities & LOW suggests another set of possibilities. (Is life ever that tidy? Hope so!)

I recently saw multiple discussions among people with hypothryoidism who get hives. I never knew, before now, that hypothyroidism can cause hives!

Only today, a neighbor showed me her hives. She'd just adopted a long-haired dog, her first doggie ever, and 2 days later broke out in facial hives. She'd told me the story over the phone. Here I was expecting big red lumps like my husband gets when he eats strawberries; instead what I saw looked like a butterfly rash to my untrained eye, startling me! She's had known allergies for years, so her allergist did two patch tests on her back that came back positive for dog dander allergies.

I think my hypothyroidism "report" and my "shaggy dog story" :D both illustrate how right you are about lupus & its close cousins being hard to differentiate from other conditions. Too many things look alike, and too few tests are specific to a single condition. I think your PCP and you are smart to investigate multiple things at once.

The particular symptoms people present with certainly can slow or speed answers. I was one of the lucky ones with one symptom that was 100% lupus-specific (an SCLE rash). So I hope you work thru any & all possibilities presented. Actually, in your shoes, I probably wouldn't say NO to any test offered, even one I didn't relish having. Hang in there! Looking forward to more updates & wishing you good luck, with my best, Vee

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