Positive to Negative ANA means no UCTD/Lupus?

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lucysgd
Regular Member

Date Joined Jun 2008
Total Posts : 400

Posted 11/5/2009 10:24 PM (GMT -7)

I think I'm going to go nuts before this is all figured out. I saw my rheumie today. Took the records showing that the latest ANA result (done by the Doc who id'd the Celiac) was negative. I started Plaquenil in December. It came down from 1:1280 to 1:640 in the spring; then to 1:320 in August and finally, to negative in mid October. I asked her if she thought this negative result was on account of the Plaquenil or the gluten free diet. She said she didn't know, then proceeded to tell me that if the remaining tests, which she ran again today, (and I don't remember all the names) for Lupus, RA, Sjogren's etc. are also negative - then "I no longer have a connective tissue disease". Huh?

Does this make sense to anyone? On top of that, I saw her because in spite of my ANA now being negative, my CRP has been climbing from 7.8 to 13.0 and WBC's have fallen to the low 4's (in 6 wks time) and I've been flaring and feeling poorly. Oy - not sure if I'm even making any sense right now, but any thoughts would be appreciated. She suggested a shot of cortisone, which I didn't jump at, so ended up with samples of lidocain patches. I'm confused and frustrated - though I know so many of you are struggling with much bigger fish right now - this being small potatoes in comparison - and honestly - I don't know how you do it (though I definitely appreciate and admire your attitudes!) There seem to be so many questions and so few answers.

Do I need to be looking for a new rheumy.....or am I "cured"

presuming no other positive tests turn up)? She didn't say anything about stopping Plaquenil, if so - and I forgot to ask. Ok - done. If you read this far - thank you.

Lucy

_{diagnoses: mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009}

_{meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins}

redrose77
Veteran Member

Date Joined Sep 2005
Total Posts : 2180

Posted 11/6/2009 2:46 PM (GMT -7)

find a new rheumy

Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar

"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence

Bsime
Veteran Member

Date Joined Apr 2006
Total Posts : 788

Posted 11/6/2009 3:48 PM (GMT -7)

Lucy,

Test results are important but do not always indicate whether the disease is active or in remission...usually, but not always. How you feel is sometimes a better indicator.

As for cured? No one can say that just because your numbers are negative. A good sign but only time will tell if you are truly in remission or not. I have been asymptomatic for 4 years but I am neither cured nor technically in remission (no symptoms, no meds). Being in remission is not the same as being cured and right now there is no cure.

Some of us will go into permanent remission but only on the last day of your life do you know that for sure.

Don't mean to be negative, just realistic. I concur that you need a new rheumy...one that is experienced with AI diseases and can communicate with you.

Bill

MCTD (lupus, scleroderma, polymyositis). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, Barretts esophagus, quadriplegic in 2005. Recovered and now active in skiing, tai, chi, hiking, golf. Meds: prednisone 2.5mg, imuran 25mg, amlodipine, benazapril, omeprazole, potassium, folic acid, vitamins, maxide and various supplements and vitamins.

Remain optimistic and you can overcome the odds.

jhmom
Veteran Member

Date Joined Oct 2004
Total Posts : 2055

Posted 11/6/2009 9:34 PM (GMT -7)

Yeah I defiantly agree with Red and Bill, time to find another rheumy! Your past ANA, CRP and low WBC should be some kind of clue for your rheumy! My rheumy never even ran an ANA on me, I took my past labs (about a years worth) and she saw the positive ANA and that was it but she looked at everything... symptoms, all labs, etc.

I sure hope you get some answers soon, we all know what you are going through and how frustrating it is. Hang in there!

Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Lupus, Sjogrens, Raynaud's, Hashimoto's and Celiac Disease
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Tramadol (as needed) and magic mouthwash (for mouth sores)

lucysgd
Regular Member

Date Joined Jun 2008
Total Posts : 400

Posted 11/7/2009 9:56 AM (GMT -7)

Thanks Redrose, Bill and Stacie - you've confirmed my thinking on the matter. But, oh, what a bugger to have to find a new rheumy! Hope everyone has a good weekend.

Lucy

_{diagnoses: mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009}

_{meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins}

suetoo
Regular Member

Date Joined Jan 2006
Total Posts : 171

Posted 11/8/2009 6:58 AM (GMT -7)

It means she, like so many of the drs. out there, is full of crap. That only means that measurable autoantibody production has been suppressed, or that the meds we take for the fun of it obviously have worked, and that you need to prompt her to read the data that acknowledges that ana titres DO come and go. Ask her if a diabetic pts. blood sugar returns to normal, does that mean they are no longer diabetic??

Or that if a tree falls in the forest, and it makes a noise when it crashes to earth, that a deaf person who sees it fall is no longer deaf??????

or..... I'm sorry you guys, I am just exceptionally ##%(*&(*^ pissy these days,

hugs,

suetoo

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis
Meds: Plaquenil, Neurontin, Thyroid, Piroxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily and Paxil, Ambien every night.

lucysgd
Regular Member

Date Joined Jun 2008
Total Posts : 400

Posted 11/8/2009 10:06 AM (GMT -7)

Oh thanks for that, Sue - I'm right there with you - if only I could think that fast when my jaw is hanging open in astonishment. When I think of the time, energy and money wasted on this doc over a 2 1/2 yr period (which includes a 2 hour round trip for each appt.) I just want to scream.....so thanks for being "pissy" as you called it- it helped!

If anyone knows of a GOOD rheumatologist specializing in CTD's/Lupus in the Columbus/Dayton/Cincinnati Ohio area, I'd love to hear about them.

To better days for all!

Lucy

_{diagnoses: mono 1972; postviral CFS 1997; fibro 1998; UCTD & osteoporosis 2007; celiac 2009}

_{meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn and lots of vitamins}

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