Ah, ha! Finally, a positive ANA

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jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 4/30/2010 11:32 AM (GMT -7)   
So after, a few years if fatigue and joint pain, my ANA was finally positive, speckled pattern 1:160. In the past 2-3 years, it was negative. They said it wasn't all that high but at least one of the tests was positive. So, what do you think about the 1:160, is that high enough to say I have lupus??? Any advice for me at this point? I am on plaquenil and feeling better. We are having to take it slow and increase the dose slowly b/c of my colitis. As always, thanks!
diagnosed 1/09 with colitis location: sigmoid colon with some diverticular disease as well
IBS, asthma/allergies, prediabetes, high BP, fibromyalgia, GERD
low thyroid
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal
pexeva, rolaids, pepsid (as needed)
Blood test positive for Crohn's via prometheus ibd serology panel


okie
Veteran Member


Date Joined Dec 2006
Total Posts : 2818
   Posted 4/30/2010 12:03 PM (GMT -7)   

hi jean, well I'm glad you got the result you were looking for. I'm not sure if congratulations is the proper thing to say or not. However I can say that my normal possitive ANA is 1:2560 and it still isn't high enough to say I have Lupus. For the most part pos. or neg. ANA doesn't mean a whole lot. You can go the whole rest of your life back and forth with pos and neg. I mean if it has been neg all this time and you felt lousey did that mean you didn't have Lupus? Who knows. The best thing I can say to you is continue to stay on top of things keep seeing your rheumy, keep taking your meds. as long as you are feeling better that is pretty much your main goal. If you have symptoms your doctor won't treat then find a doctor that will. Unfortunately there is no test that says yes you do or no you don't have lupus. Just take goodcare of yourself. stay on top of things with your doctor don't miss appt. and make sure you have a doctor you can work with. That's all I can say. I imagine someone will come along and give you some other advice.

take care

carol


furosemide,spironel,lisinopril,lortab,azithromyazin,detrol
nexium,temazepam,predisone,plaquenil,propanalol,effexor,citracal,pottasium, vitB,iron,xopenex,advair,spirivia
 
"Consider it a pure joy, my brothers, whenever you face trials of many kinds, because you know that the testing of your faith develops perseverance." - James 1:2&3
 


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 4/30/2010 12:27 PM (GMT -7)   
Unfortunately, Carol is correct, there is no one test that says yes/no about a Lupus Dx.

The Dx is made by studying the symptoms and the lab tests, then determining if you have
4 of 11 symptoms. That said, many rheumys like seeing that positive ANA (even a low positive) before they want to write Lupus on your chart.

Carol is also correct in that the main thing is to make sure your symptoms are being treated. However, if you need to or intend to try for a disability claim, either with a private company or SS, that Lupus Dx is important.

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 4/30/2010 1:28 PM (GMT -7)   
Thanks for the info! I was just reading this about lupus. When I was in school some 30 years ago, a positive ANA meant you had lupus. Sounds like things have changed. How interesting. My doc did suspect mixed connective tissue disease. I guess he will explain that more when I see him in two months. Yea, nobody wants that diagnosis for sure. I hate to say I was glad that something turned up positive because I knew something was wrong. I've been too tired and achy. I read where these diseases often develop over a matter of many years. It is funny that some have symptoms and tests are negative and visa versa. People could have a positive test and feel just fine. Go figure. Thanks so much for the info, I really appreciate it. I think people here are the REAL experts!
diagnosed 1/09 with colitis location: sigmoid colon with some diverticular disease as well
IBS, asthma/allergies, prediabetes, high BP, fibromyalgia, GERD
low thyroid
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil
pexeva, rolaids, pepsid (as needed)
Blood test positive for Crohn's via prometheus ibd serology panel
Positive ANA ? mixed connective tissue disease ? lupus??


Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7020
   Posted 4/30/2010 1:37 PM (GMT -7)   
Well, we're REAL people, but I don't know about the 'expert' part....
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 4/30/2010 7:48 PM (GMT -7)   
you can have lupus with a negative ANA so the blood work isn't the end all be all
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, Sj√∂gren'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


nolatoco
Regular Member


Date Joined Jun 2009
Total Posts : 66
   Posted 5/1/2010 8:00 AM (GMT -7)   
My main symptoms are very achy joints and extreme fatigue.  My only tests that came up positive was my ANA and my CRP (which tests inflammation) so my rheumatologist has given me a diagnosis of UCTD (undifferentiated connective tissue disease).  Now, in addition to medications, my rheumatologist see me about every 3-4 months (as long as I am not having any more issues) with labwork, and she's mainly monitoring me for other organ involvement and waiting for something else to rear its ugly head. 
 
Unfortunately, the positive ANA, symptoms, and CRP didn't give me much of a diagnosis, but at least I'm functioning with the meds I'm on so I'm satisfied for the time being.
Diagnoses- UCTD 2009, ovarian cysts 2008, asthma 2001
Daily Meds- Plaquenil, Prednisone, Vitamin D, Wellbutrin, Glucosamine Chondroitin 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 5/1/2010 11:22 AM (GMT -7)   
You sound like me! You take prednisone too? I had to take some as pre meds for a CT scan since I am allergic and I felt sooooooo good. However, I want to avoid that at all costs.

I was feeling so much better as soon as I started the plaquenil but two days ago woke up feeling like crap again. I got a refill for cymbalta, that usually helps me. I had to start out with a small dose of plaquenil because I have a touchy stomach but I think I am going to up the dose to see what happens. I've got to get feeling better. My sed rate was 40 but the crp was ok. I've got colitis to fight on top of this. On days like today, I feel like giving up and putting in for disability. I slept 12 hours last night and woke up feeling like crap! I can't take advil or aspirin b/c of the colitis and those help soooo much. This has also been coming on for a long time. Thirteen years ago, I was told I had fibromyalgia. Maybe they just didn't run enough tests and I had it back then too. These forums are a lifesaver!
diagnosed 1/09 with colitis location: sigmoid colon with some diverticular disease as well
IBS, asthma/allergies, prediabetes, high BP, fibromyalgia, GERD
low thyroid
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil
pexeva, rolaids, pepsid (as needed)
Blood test positive for Crohn's via prometheus ibd serology panel
Positive ANA ? mixed connective tissue disease ? lupus??


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 5/3/2010 10:09 AM (GMT -7)   
I know how all of you feel. I've has a fluctuating ANA. Always positive, always speckled with exception for the one that was run after three months on Imuran, go figure. My DUM-DUM Rheumy at the time decided that all the other were false positive and my always never changing high positive RA factor must have been a false positive as well. This is the idiot that then yanked me off all my meds including Plaquenil and put me into such a flare that I had huge hives head to toe, fatigue like I had been hit by a semi and joint pain that made go from Darvocet to Lortab 10's. That's also about the time when the migraines started. Whatever happened to "Do No Harm?" Anyway, after months of searching, a new PCP, a neurologist, a pain doctor and referal to a really promising Rheumy July 1st, I finally have some hope on the horizon. I must warn you all about pain clinics though. If you must see one because your PCP can no longer precribe pain meds for you due to Federal Laws or whatever, just becareful. Some of these place are total scams. They'll give you your drugs, but they will make you back every month, you may see a different doctor everytime, and there is no guarntee that the person you see is not a student completing their fellowship or something. I got fed up with the lack of knowledge and caring at the last place and had find another one. Sometimes good care is so hard to find, but well worth the time you invest in it. By the way, sorry for the rant.

Jennifer

Taking plaquenil, atenelol,  Flexeril, Claritin, Zantac ,Trazadone, Ambien, Prednisone 5mg, super B complex, multi- vitamin, folic acid, 15mg er morphine twice a day and Lortab 10 3-4 times a day, Imitrex for migraines.  Allergic to all NSAID's and Ultram.   Mom of 2 boys 2 1/2 and 7.  Symptoms: Fatigue, joint pain and swelling,Raynauds,numbness,tingling,weakness, heat/sun sensitivity, mouth and nose sores, malar rash, migraines, awful hives, positive ANA, with speckled pattern, positive RF, negative anti-DSDNA, and positive for Sjorgen's Syndrome.

 

 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 5/3/2010 1:23 PM (GMT -7)   
What an idiot. He must have gotten his degree from Sears catalog! Even one positive result with symptoms means something. Your doc doesn't listen and eventually you tested positive for Sjogren's! My doc wanted me on plaquenil just when I got the rash but back then my colitis was so bad, it irritated my stomach. What people go through. I can't believe you have to wait for July 1 for relief??? I'd be ranting too. Good luck Jennifer! I feel very happy to have found a good rheumatologist in my small town, he's awesome!
diagnosed 1/09 with colitis location: sigmoid colon with some diverticular disease as well
IBS, asthma/allergies, prediabetes, high BP, fibromyalgia, GERD
low thyroid
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil
pexeva, rolaids, pepsid (as needed)
Blood test positive for Crohn's via prometheus ibd serology panel
Positive ANA ? mixed connective tissue disease ? lupus??


puccini914
Regular Member


Date Joined Jun 2008
Total Posts : 363
   Posted 5/3/2010 4:09 PM (GMT -7)   
Oh, Thanks Jeanneac, I'm not waiting until until July for relief. My PCP, who IS extremely intelligent put me back on Plaquenil and pred, started MTX two months ago, Topomax and Imitrex for Migraines via a nuerologist, Pain meds via Pain clinic, and the diagnostic tests continue. I'm hoping this new Rheumy can eventually lead to a more conclusive diagnosis as to what is ridning along with the sjogren's if anything, and to help with the ongoing treatment. I'm so happy to have that idiot out of my life and just wish there was some way to warn others about him without the worry of ending up with a slander lawsuit slapped against me. Well, we all meet our maker in the end, don't we?

Jennifer

Taking plaquenil, atenelol,  Flexeril, Claritin, Zantac ,Trazadone, Ambien, Prednisone 5mg, super B complex, multi- vitamin, folic acid, 15mg er morphine twice a day and Lortab 10 3-4 times a day, Imitrex for migraines.  Allergic to all NSAID's and Ultram.   Mom of 2 boys 2 1/2 and 7.  Symptoms: Fatigue, joint pain and swelling,Raynauds,numbness,tingling,weakness, heat/sun sensitivity, mouth and nose sores, malar rash, migraines, awful hives, positive ANA, with speckled pattern, positive RF, negative anti-DSDNA, and positive for Sjorgen's Syndrome.

 

 


jeanneac
Veteran Member


Date Joined Feb 2009
Total Posts : 1812
   Posted 5/3/2010 4:36 PM (GMT -7)   
I wish there was an easier way to file complaints about health care providers who do not deserve to be practicing medicine!! We've all run into our share of them. I guess I saw 3-5 GI's, an internal med doc and one Gyn (who was female, btw) that all totally blew off my symptoms. Finally when I went to the GI doc at mayo, he said he didn't think my symptoms were related to diverticulitis because I did not respond to antibiotics. I'd probably still be sick if I hadn't gone to him!! Not that it was an easy recovery this past year. This all started around the same time and the rheumatologist thinks it is related. I've heard other stories way worse than mine from the crohn's and UC forum, there are way too many bad doctors out there if you ask me. OK enough of my soapbox.

Glad you didn't have to wait until July to get relief. That would have been horrible.
diagnosed 1/09 with colitis location: sigmoid colon with some diverticular disease as well
IBS, asthma/allergies, prediabetes, high BP, fibromyalgia, GERD
low thyroid
claritin, singulair, diovan, progesterone, VSL#3 probiotic, Vit. D, colazal, plaquenil
pexeva, rolaids, pepsid (as needed)
Blood test positive for Crohn's via prometheus ibd serology panel
Positive ANA ? mixed connective tissue disease ? lupus??

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