what's up with that?.....

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KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 12/12/2007 3:54 PM (GMT -7)   
O.k, so I tested positive 3 wks ago (ANA anit-nulclear ab postivive, 1:160 homogenous) rheumi ordered another test and now i'm negative!! My esr has gone up from 28 to 36. I don't get it, how can it be positive three wks ago and negative now?!!  She said maybe the lab made a mistake....what? Have you heard such a thing? So does this mean it is definetely not Lupus? She said that we can try some meds (two kinds don't remember the name, starts with p that's prescribed for lupus) and see if I respond to them....is this a good idea or should I seek another opinion?
 
 
Thanks,
 
KaAl

Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 12/12/2007 8:44 PM (GMT -7)   
It's not unusual for your ANA to go back and forth like that.  Mine did.  Just remember that more and more diagnosises are coming regardless of the ANA.  It's not the end all be all test.  It's also very common for your sed rate to go up and down and not make sense either.  You can feel like crap and your esr will be normal.  Then feel great, and your esr is elevated slightly. 
 
This does not mean you don't have lupus.  Do you have at least 4 of the 11 criteria for lupus? Here's a link to them..
 
The meds she might have mentioned that start with "p" are Prednisone (immune suppressant/anti inflammatory), and Plaquenil. 
 
Honestly, KaAl, I would seek a second opinion before starting any medication.  These are "big guns" so to speak.  If you don't have lupus, and you take these medications, you could be seriously harmed.  Your rheumatologist MUST have a more positive diagnosis for you before any medication regime is started. 
 
Good for you, for asking the right questions here.  Get that second opinion.
 
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 12/12/2007 9:10 PM (GMT -7)   
Actually plaquenil is not dangerous. It is used in many different autoimmune diseases. It can take as much as 6 month before it does anything. A short trial of prednisone can be helpful in deciding if you have lupus or a lupus like condition. So long as the trial is short it is not dangerous. A lot of people are on these meds with no diagnosis. I say get a second opinion if you want but be absolutely sure the doctor you see is a lupus expert not just a rheumetologist. ANA results can vary from lab to lab and day to day. ANA is not as reliable as a lot of doctors want us all to believe- it is just too unpredictable. I am ANA negative but was dxed because I had everything but kidney involvement and blood work on the 11 criteria. I even have a history of low positive lupus anti-coglutent and anti-phospholipid antibodies. There are so many antibody tests and if all you have had done is SED/ESR and ANA then you definately need to see a second rheumy. In fact do not be afraid to get a 100th opinion. I wish you luck.
Dx:fibromyalgia 2002, systematic lupus 2005, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, pregnant due May 2008
Tx: plaquenil, Enbrel, Darvocet, Singulair, Flexeril, Baby Asprin,Prednisone


RebeccaDestiny
Regular Member


Date Joined Nov 2007
Total Posts : 47
   Posted 12/12/2007 9:27 PM (GMT -7)   
I've been tested negative and positive a few times for ANA.. it'll be ridiculously high, then negative. Like the other people said they're really unpredicatable. As for the medications, do you have any other health problems? If so, they might mess with them, especially the prednisone, if that's indeed what it is. Prednisone has been known to cause problems if you have heart problems, high blood pressure and some other things my doctor said.
I hope you get everything figured out though.
Diagnosis - SLE, FM, high blood pressure, A-fib, SVT, renal stenosis.. Biliary C, seizures, hypoklemia, anemia, ovarian tumor, arthritis. chronic kidney stones.
Medications - Oxycodone, depakote, ativan, lyrica, metrapolol, zantac, prednisone, plaquinil, cellcept, phenagren, potassium, shots of cortisone, shots of lidocaine.
http://www.myspace.com/lupusgroup
Help spread awareness.


KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 12/12/2007 9:32 PM (GMT -7)   
Thanks ladies....yup that's it prednisone and plaqunil (?) she prescribed low dose I think it is 2.5 mg I don't have any other health issues other then all these weird symptoms!

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/12/2007 9:50 PM (GMT -7)   
Hi girl,
 
Okay.  We're getting somewhere here!  She prescribed a VERY low dose of prednisone.  Probably not even close to what you need in order to see if it makes a difference in how you feel. 
 
A little anatomy lesson for ya!  The adrenal glands are small, almond shaped glands that sit on top of your kidneys.  These little glands produce many of our body's hormones.  One in particular is cortisol.  When you have an autoimmune disease like lupus, the adrenal glands don't produce enough cortisol to combat the inflammation that is going on in the body.  So as a treatment, prednisone is prescribed to pick up the slack.  Prednisone is a synthetic form of cortisol.  The body naturally makes between 5 - 7mgs of cortisol.  So for most of us, when we're initially diagnosed, we need 40mg or more to really knock the inflammation out and start feeling better. It also takes about 2 weeks for a high dose to kick in if you've never been on it before.  So 2.5mg is not very much!  Just my opinion here, but I don't think that is going to help you.  Anyone else? Ideas, suggestions? Comments?
 
I saw your other thread asking for a lupus specialist.  You're already seeing a rheumatologist, who is a lupus specialist.  No one else can diagnose lupus.  Only they can.  So, you just need to see another one, or like Redrose said, see as many as you need to.  I've been through 4, and Bill sees two at the same time!  So, make sure you feel really comfortable with your rheumy, as this is the person who will be managing your lupus.  Definitely get in touch with your local lupus foundation chapter.  They can give you a list of rheumies to call.
 
Is this helping or making it worse for you????  I hope this is giving you some encouragement and a direction.  I'm sure there will be many more people posting ideas and suggestions too.
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 12/12/2007 10:58 PM (GMT -7)   
Not all rheumy's know as much about lupus as others...some are just more active in other areas of rheumatology.

I found I felt more comfortable once I was dx to know that my rheumy was active in lupus-related activities, so I was able to trust that he was up to date on lupus treatments.

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Cellcept, Prednisone, Trazodone, Fosamax, Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS(4of11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 12/13/2007 10:57 AM (GMT -7)   
Hey ginny. Thanks for the info! That is prob a good idea but I am not comfortable right now meeting with people. I wish someone here can give me a recommendation.

Hey Lynn. I agree that not all rheumies know much about lupus as others....like the one I saw, she said she has a few lupus patients....I would like to see someone that has more than just a few...ya know? The more knowledge the better, I think!

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 12/13/2007 2:28 PM (GMT -7)   
Hi KaAl:

I know this is a terrible thing to hear but, it takes time to DX lupus. You may go through several Rheumy prior to getting your DX. Then there's the you've had the DX for sometime and your Rheumy leaves or changes and you get a new one and they want to un DX your disease. It's so frustrating dealing with lupus. The other member have given you lot of good advice. I'd contact the lupus organization in your area and get the name of a doctor. I live in Maryland and see my doctor through the military so I'm of no help, sorry. Wishing you the best and good luck.

Take care,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


KaAl
Regular Member


Date Joined Sep 2007
Total Posts : 151
   Posted 12/13/2007 2:42 PM (GMT -7)   
Barbara, I did call the lupus org, they pretty much gave me a few rheumi names but what I was looking for is someone that can give me a recommendation of a rheumi that they use and maybe one that dx'd lupus for them....thanks .
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