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New and need some advice

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Old 11-21-2011, 01:48 PM   #1
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heymj HB User
New and need some advice

I was feeling tired and having joint pain for years. Primary care dr ran tests and ANA came back positive 1:80 mixed which she thought was pretty low and nothing to worry about. Then I came back a few months later with same sort of symptoms but including foggy brain and some swollen glands. More tests which all came back negative except for positive ANA at 1:160. She still didn't do anything even though it was recommended at that time to run more tests. Came back in a few months later with joint pain, tired, foggy brain, swollen glands and hair loss. She then ran an entire battery of tests but still nothing positive except the elevated ANA.
I was then referred to rheumatologist who ran a few more tests and put me on prednisone and then when that worked added plaquenil with a plan to taper off prednisone if the plaquinel works. Prednisone definitely helped. He still doesn't want to give a diagnosis of lupus and I am concerned as I have read where people get taken off meds because they no longer have symptoms and blood tests come back normal due to the meds making things better. Then the whole cycle has to start over to get the diagnosis so you can get back on the meds that make you feel better.

My question is: Do I need to search for another rheumatologist and try to get the diagnosis or do I just stay where I'm at and hope that it all works out.

I have also had (but don't have currently) a discoid rash and mouth sores.

This is all very frustrating and worrisome.

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Old 11-22-2011, 08:21 AM   #2
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Re: New and need some advice

heymj, hello & welcome. I do understand why you want/need a firm diagnosis, to retain meds. I also think you'd want to know in order to monitor concerns peculiar to a particular Dx.

Do you have copies of labs run by your earlier dr. and your rheumatologist? Have you seen antibody tests in addition to ANA? I ask because ANA is actually quite general, not specific to any one condition. Specific autoantibodies could help firm up a Dx, one would think...

Have you read the "stickies" with permanent info (at top of thread list)? In them you'll see only a few specific autoantibodies that "make" the list of 11 criteria for SLE, such as anti-ds-DNA, anti-Sm, and antiphospholipid. However, there are at least a dozen more possible in SLE; but those others don't "make" the criteria list because they're less "specific" to SLE. Examples of those others include anti-Ro, anti-La, anti-RNP, antihistone, ETC.

And because there "close cousins" to SLE and "crossovers" with SLE, you'd want to see from your labs if you've been tested all those, too. Here I'm thinking of things like RA, mixed connective tissue disease, undifferentiated connective tissue disease, Sjogren's syndrome, etc.

Another path to clarity might be dermatology. Did a dermatologist or dermatopathologist prove for sure that your lesions are lupus-specific, via biopsy, perhaps with additional immunofluorescent stain tests? If so, as I understand it, that would mean you DO have lupus to some degree. By that I mean you're already on the spectrum, which ranges widely from skin-only to subacute systemic to acute systemic.

I believe people with "skin-only" don't have a positive ANA, which sort of suggests (to dumb me, anyway) that if this is lupus, it seems MORE than skin-only already---because of your hair loss, swollen glands, mouth sores, etc.

I went years with no Dx or treatment, because my local drs. were clueless and wouldn't treat without a Dx. Finally took my sorry self to a teaching-hospital rheumatologist & dermatopathologist. Finally got appropriate blood tests and skin tests, and a very fast Dx of subacute SLE (meaning no major organ involvement). My widespread skin lesions were SCLE annular, which unlike discoid, don't scar or depigment, and are associated with anti-Ro.

When did you first see this rheumatologist? If only a few months ago, sadly that's not long at all in the world of autoimmunes. The bad news about steroids before a dx is that they can suppress autoantibodies, thus masking the very test results that could provide clarity.

I just reread what I wrote and find it a mess (sorry). What a hard subject for patients to discuss. Anyway, I hope there's something here that gives you some ideas & that you post more soon. All my best to you, Vee

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Old 11-22-2011, 03:03 PM   #3
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heymj HB User
Re: New and need some advice

HI Vee,

Thanks so much for taking the time to get back to me. From what I can tell you are the angel of this health board.

Regarding tests:
I am seeing a rheumy from a unversity medical center in California. He has run all the tests for LUPUS plus ruling out hepatitis, scleroderma. He checked my thyroid which is hypo but treated with levothyroxine and it is also normal.

The tests he has not run that I can see are:
Syphylis and
the tests for antiphsophilipid syndrome:
Positive LE Cell preparation
Anticardiolipin Antibodies
Lupus Anticoagulant

I have four symptoms for APS not including the diagnostic tests: Headaches, memory loss, recurrent miscarriages (in the past, I am menopausal now) and cold circulation with the webbed skin pattern.

So maybe I should ask him for these tests. Although I have had so many other odd health things: Thyroiditis, three cases of shingles, odd rashes at times, digestive issues diagnosed as IBS, a spell of pleurisy last winter than I never bothered to have diagnosed (had kind of given up hope at that point), weired neuralgias (sudden shooting pains in various places that are extremely painful). And the meds seem to be helping so much with the fatigue and the joint pain. I honestly feel as though it is lupus but now with something else because now I am very cold all the time (this is somewhat new). I had assumed this was due to low thyroid but they checked that and it is normal so now maybe it is APS?
I guess I am just scared and I feel like no one really understands even the people I trust the most. I am so thankful for this placed to go.

And thank you again!


Old 11-23-2011, 03:25 AM   #4
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Re: New and need some advice

Marti, hi. I didn't know you have hypothyroidism, which of course adds more for your rheumatologist to sort thru. While hypothyroidism and lupus can easily co-exist, each can easily appear standalone. Symptoms overlap a lot. I think fatigue that makes you foggy, joint pain, and feeling too hot or cold could as easily occur in hypothyroidism as lupus, and I think Hashimoto's thyroiditis can cause a positive ANA.

As for APS, I think its symptoms also overlap with lupus symtpoms, like headaches, foggy memory, and mottled skin (livedo reticularis). (I certainly had those 3 & have only lupus.) But because of your history of miscarriages, I totally agree that it makes sense for you to ask about APS. FYI, I think the syphilis test is an APS test only in a "backward sense", in that APS can cause that test to be FALSE-positive.

As for your lupus tests. When you say the doctor ran "all" the lupus tests, did you mean those SPECIFIC autoantibodies I alluded to earlier? In normal situations, they're hard to trap, because many rise and fall as flares come and go. Just envision your immune system misbehaving sporadically, not constantly, making trapping them like hitting a moving target. As for adding meds: Plaquenil alone turned my autoantibodies negative about 1-1/4 yrs. into treatment. For me, great... but in your case, not so great.

I'm wondering if, even though your rheumatalogist hasn't called this lupus, maybe he called it something else, to justify prescribing Prednisone & Plaquenil, maybe undifferentiated connective tissue disease (UCTD)? You could ask him that.

But despite the muddy picture, to me the GOOD news is that you're feeling better, and the GREAT news is that you don't have major organ involvement (heart, lungs, kidney, brain). In lupus, many people do remain subacute, given treatment & regular follow-ups. So please don't fear falling off the proverbial cliff, OK? I think you should visit your local library & borrow some lupus hardcovers written for patients. Reading could help your perspective, suggest more questions to ask your specialist, and help you worry less.

I know what you mean about people around you not understanding. How could they? It's a complex subject to us, let alone to them. I hope you head to the library & that you keep posting. Happy Thanksgiving. Hugs to you, Vee

Old 11-23-2011, 08:58 AM   #5
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heymj HB User
Re: New and need some advice

Hi Veej

Yes, I have had the hypothyroidism for years and from what all the tests say my thyroid function is normal with the medication.

I looked back over all my paperwork and yes, he did give me a diagnosis of Diffuse Connective Tissue Disorder NOS. When I saw him he said he couldn't give me a diagnosis but maybe he meant he couldn't be more specific?

I am also thinking that my reactions are weird right now because this is all new and because I have just started on prednisone which may be making me kind of paranoid.

I will definitely check out some books and have read one already so I know that my current symptoms are not nearly as bad as they could be. My only worry is that without a clear diagnosis I would be taken off the meds which are helping. That being said, I am in a better place today than yesterday for whatever reason.

Thanks again Veej for sharing your wisdom.

Old 11-23-2011, 01:47 PM   #6
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Re: New and need some advice

Hi. Undifferentiated Connective Tissue Disease is a real dx, kind of "fuzzy" but totally real. Presumably, Diffuse is, too. People classified as Undifferentiated pan out differently over time. 5 years out, some have no disease at all; some still have UCTD; and others have more precise dx'es of lupus, scleroderma, RA, primary Raynaud's, polymyositis, and mixed connective tissue disease.

I'm not sure what "Diffuse" is---maybe something akin, maybe even identical? But knowing you have a real dx at least takes one worry off your plate---good! I hope the meds are helping. Keep us posted. Sending my best wishes to you, Vee

Old 01-03-2012, 06:23 PM   #7
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leeesap HB User
Re: New and need some advice

Hi, I've had lupus for years, but it took a very long time for the diagnosis. I know how frustrating that it can be. If I were you, I would find another dr. that would take the time and effort to work with you to come to some conclusion instead of playing the guessing game. Lupus can be a serious disease and can cause alot of difficulties. Keep fighting to get the right diagnosis. Hope this was helpful!

Old 01-04-2012, 03:47 AM   #8
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Re: New and need some advice

Hi. According to my lupus hardcover, UCTD (undifferentiated connective tissue disease) is a valid diagnosis. In that book, the author describes a group of UCTD patients who were followed for 5 years. By then, some had a different and more precise dx: lupus, scleroderma, RA, primary Raynaud's, polymyositis, MCTD; some had NO disease; some STILL had UCTD.

Perhaps a dx of UCTD is the ONLY dx available, given a patient's lab results, symptoms, etc. But on the OTHER HAND, maybe another doctor could do better. i.e., were the "right" antibody tests run at the "right" time, by a lab that excels at antibody tests? (My dr's practice is very particular about the lab it uses.) Did the dr. properly assess lifetime medical history and current symptoms? Etc.

I can appreciate intellectually that a UCTD dx could be valid. So, knowing what I know now (and didn't then ), if I were given a UCTD dx, I'd borrow library lupus hardcovers & check whether my doctor had run ALL tests described for lupus and its close cousins. Also, whether he'd meticulously evaluated my lifetime medical history. i.e., how thorough has he been?

...But that's knowing what I know now! I was certainly one confused puppy for decades, despite seeing many specialists. By the time my upper torso and arms were covered with an annular SCLE rash, for 8 years (!), I started also seeing dermatologists, none of whom recongized the rash as a lupus rash. Further, none of my local drs. seemed to understand that my wild, bumpy lifetime medical history included almost all the "alternative criteria" (those listed in a "sticky post" at top of thread list). I finally took myself to a teaching hospital rheumatologist who dx'ed me with SLE, requiring less than one month to figure it out.

So, if for whatever reason, you don't fully trust your current dx, it makes sense to seek another opinion, hopefully from a doctor in a separate medical system, so the new dr. isn't swayed by his local colleagues. Good luck & best wishes, Vee

Old 01-05-2012, 05:23 PM   #9
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Re: New and need some advice

Must say this post really caught my attention. I would love to know what medications can cause a person with an autoimmune disease to be symptom free for any period of time. Would be nice to know !!

Old 04-20-2012, 10:59 PM   #10
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YaYaForever HB User
Re: New and need some advice

i think you should get a new rumatoligedt. ignoring all the facts you gave the fact you even have to ask yourselfthat qiuestion means you should. i cant even get one because i switch from remishion to normal to much. plus there are doctor out there who are to scared to tell people strait out they have lupus. you should look up stuff about it online show your doctor/rumatoligest the facts showing that you need medicine or watever you need and they stil font say anything u should get a new doctot.

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