Lupus screening shows high numbers...

Anyone have any blood work done during withdrawal and showed a high number for Lupus screening? Blood tests came back and showed ANA Titer @ 320 where below 80 is normal. This pisses me off because I've never had these kind of numbers before benzos. IgA and IgG are slightly elevated as well. I also tested negative for rheumatoid arthritis. Can anyone provide some insight on this? Do the numbers return to normal after a period of time? Rheuma doctor wants to perform additional bloodwork to see if I indeed have Lupus. 

Interesting, Drugfree,

 

I have about a years worth of positive tests for autoimmune. Lupus is a tough one to actually diagnose but my double strand DNA was so highly positive that the rheumotologist actually said, "there's no guessing on this one...it's Lupus". I mean the ds-DNA numbers are supposed to be below 10. Mine was 171. Then it went down a little, then down to border line and the last comprehensive panel they did, it was normal.

 

If I were you, I'd go ahead and get the testing, especially if you have good insurance. Its pretty expensive. As far as I can tell, the testing is not completely reliable and each rheumotologist interprets a little differently. At times, I would have one doc saying I needed to go on all the Lupus drugs and another saying I didn't. It was all very confusing for me.

 

The elevated ANA simply measures the level of inflammation in your body. Mine is still elevated, too. And my C-reactive Protein is still very high., also measuring inflammation. I expect both to go down. However, keep in mind that most of the population has some degree of inflammation, so slightly elevated numbers are not alarming.

 

I'll watch your progress with interest. One of our buddies on here, Beeper, has a Lupus ddx. It seems like the real deal though. She doesn't come on all that much anymore.

 

Keep us posted,

Flip

Fliprain,

 

Thank you for that info. I will surely keep you posted on what say with the additional blood tests. The doctor seemed perplexed as to why those numbers were high and others were within normal range. I'm crossing my fingers and hoping those tests come back normal or at least not too high. He told me not to worry and it doesn't seem too severe. I guess I'll have to wait and see. Benzos screw up everything and that includes our immune system. 

When I was in tolerance w/d, my Neurologist ordered an ANA titer test.  The ANA (antinuclear antibody) test screens for many different antibodies to the nuclear component of our cells.  My titer was 640 with a homogenous pattern.  I had further testing done and found out that I had an elevated procoagulant antiphospholipid antibody called Anti Beta 2 Glycoprotein 1, IGM that was elevated.  I don't have Lupus, the tissue antibody autoimmune disease, but was diagnosed with Thrombophilia, a blood coagulation problem.  The doc should test for Lupus antibodies and antiphospholipid antibodies when they do further testing.  The first Rheumy said I had Lupus, while the second Rheumy said no active Lupus, but myalgia.  The hematologist diagnosed me with Thrombophilia based on that antibody test and my ESR, Erythrocyte Sedimentation rate, which was 2. 

Becksblue,

 

How many months were you off benzos when you tested for the ANA titer? I want to see to compare to see if the numbers will start to go down since yours is double what I tested for. I also ask because every mont that passes I noticed less pain and it feels like my muscles and joints are getting slightly stronger. 3 months ago I couldn't even lift a 5 gallon water container or let alone 2 gallons. Now I can lift a 5 gallon but with a little trouble. I'm hoping this is a good sign.

I was diagnosed and treated for lupus 12 years ago. I had a positive ANA, don't remember the #s. I  Had major joint problems along with fatigue 24/7. I went to Shands( A HUGE TEACHING HOSPITAL AT THE UHIVERSITY OF FLORIDA IN GAINSVILLE) for confirmation. If you have a positive ANA without the physical sx it's hard to get diagnosed with lupus. Prednisone is (or was)the main med. I believe they treat the sx first, if the treatment works  then there is a better chance you will be diagnosed with lupus. A positive ANA alone does NOT give a person a lupus diagnoses.  Many people with lupus only test a positive ANA during a flair. I've been on 10 MGs of prednisone for 12 years. Every time I try to taper the inflammation(joint pain) gets bad in my shoulders, I can't lift my arms till I raise back up to 10 mg. , which is a low dose. As soon as my benzo sx get better I'm going to start another taper.  I don't know everything about lupus but I do know a lot and know lots of lupus people who know a lot more than me. I will tell you it usually takes a while to get diagnosed with lupus and benzo wd sx can and do mimic lupus sx

Anyone have any blood work done during withdrawal and showed a high number for Lupus screening? Blood tests came back and showed ANA Titer @ 320 where below 80 is normal. This pisses me off because I've never had these kind of numbers before benzos. IgA and IgG are slightly elevated as well. I also tested negative for rheumatoid arthritis. Can anyone provide some insight on this? Do the numbers return to normal after a period of time? Rheuma doctor wants to perform additional bloodwork to see if I indeed have Lupus. 

What are your physical symptoms?

Honestly my worst symptoms are the joints in my thumbs and spinal muscle pain. Nothing is really painful and it's gotten better as the months go by. I'm wondering if this is just a temporary flare up. Regardless I will perform the other tests to see where I stand with this. It's possible I don't have lupus. Or at least I hope not.

Honestly my worst symptoms are the joints in my thumbs and spinal muscle pain. Nothing is really painful and it's gotten better as the months go by. I'm wondering if this is just a temporary flare up. Regardless I will perform the other tests to see where I stand with this. It's possible I don't have lupus. Or at least I hope not.

Lupus and fybro sx are similar to benzo wd sx. My guess is if your sx started with benzo wd and are getting better as benzo wd do with time, that's what it is. A positive ANA does not mean you have lupus. The 2 most common meds they give you to treat lupus is plaquenil(anti malaria medication)and prednisone. If your inflammation is going away with time,why would you need he meds? All a rheumatologist does is manage your meds.,so the lupus people say.

A good lupus web is wehavelupus.com

Becksblue,

 

How many months were you off benzos when you tested for the ANA titer? I want to see to compare to see if the numbers will start to go down since yours is double what I tested for. I also ask because every mont that passes I noticed less pain and it feels like my muscles and joints are getting slightly stronger. 3 months ago I couldn't even lift a 5 gallon water container or let alone 2 gallons. Now I can lift a 5 gallon but with a little trouble. I'm hoping this is a good sign.

When I had the high ANA titer, I wasn't off benzo's at the time, but was in tolerance w/d, about five months before I jumped off.  It is a screening test for any autoimmune disease.  There is a pattern associated with the test, what was yours?  Mine was homogenous.  I think that indicates something, too.  I was under alot of stress then too at my job so that added to it.  From what I've learned about the ANA, it doesn't take much to go from one titer to another, I think they double the aliquot for the test and it doubles the number.  I was trained as a Medical Lab Tech years ago, but can't quite remember the test method for this, but they do dilutions which move the results up or down quite a bit with each test.  So, one time it can be quite high and the next test lower.  I never had any of the Lupus s/x's, such as swollen or pain in my joints, but the first Rheumy did give me Plaquenil, which is a powerful antimalarial drug they use for Lupus.  It made me feel horrible.  Use a little bit at first, if they give it to you. What I do have are the s/x's for Hughes Syndrome, Antiphospholipid Syndrome, which is a blood problem, blood coagulating in my vessels.  I had quite a lot of calf pain and cramping while on the benzo's, which is also a s/x of Hughes.  When I got off the benzo's the leg cramping let up, but flares when I'm having anxiety.  Antiphospholipid syndrome is not Lupus, but a problem with the blood components.  So, I'm at risk for a MI or stroke from clots.  I think these benzo's cause stress and that brings out our genetic predisposition to autoimmune diseases.

while still in tolerance w/d, this lupus "Anticoagulant test" kept coming up wrong and the number indicated i could have a stroke or something. i can't remember the actual name of the est but it was a lupus anticoagulant test (not for lupus)...

 

i took that test for five year straight and it never changed. i decided to stop taking that test until i am healed from this or ton's better. i think all tests come up wrong or not the way they would or should be otherwise. we don't know of the million of thousands things that are going on in the body during this benzo w/d. i would expect inflammation numbers on any test to be through the roof!

 

i also have been diagnosed with MS because of two silly leison's on my brain. some people think you can't get leison's from years and years of benzo's or benzo withdrawal--i say hogwash to that and i'll say it again 'hogwash" but i still won't know until i am healed from this about MS or not.

 

again, i just think it's safe to assume that all test numbers are going to be slightly off during this time.

 

 

You know I would to blame all these so called temporary symptoms on benzos. I just hope after it's all said and done I don't end up with some long term illness. Either way I'll go and run further tests to see how severe this is. But I will definitely be cautious about the meds they try giving me. Btw here are some of the tests that were performed for the screening.

 

Rheumatoid Factor = <5 (<14 Normal)

IgA = 406 (70-400 Normal)

IgE = 41.7 ( <100.00 Normal)

IgG = 1633 (700-1600 Normal)

IgM = 141 (40-230 Normal)

ANA Titer = 1:320 A (<1:80 Normal)

 

 

 

Many of the tests test for either IgG or IgM.  I don't have inflammation problems, which surprised me since I asked my doc to test for that.  My C Reative Protein was negative which is a test for inflammation.  Rheumatologists should test for both Antiphopholipid antibodies and Lupus antibodies.  None of my Lupus tests showed any positives.  I had a complement test which was low, but that could be my thyroid.

You know I would to blame all these so called temporary symptoms on benzos. I just hope after it's all said and done I don't end up with some long term illness. Either way I'll go and run further tests to see how severe this is. But I will definitely be cautious about the meds they try giving me. Btw here are some of the tests that were performed for the screening.

 

Rheumatoid Factor = <5 (<14 Normal)

IgA = 406 (70-400 Normal)

IgE = 41.7 ( <100.00 Normal)

IgG = 1633 (700-1600 Normal)

IgM = 141 (40-230 Normal)

ANA Titer = 1:320 A (<1:80 Normal)

I agree with Pretty. Don't get me wrong, I do think you have to take these test seriously(my words) but also with a grain of salt. I have had lupus for many years and since I've been going through benzo wd my labs have not been accurate. These test have sent me to lots of specialest with no results. I believe it's because our CNS is so damaged .  The sx for benzo wd are really(hardly) not treatable(only time). SX for Lupus  very treatable and might not even need meds to treat sx. Again, positive lab results does not mean you have lupus .  Lupus can go into remission and not come back.  I'm not trusting my quarterly lab test results till my benzo sx are almost gone.

Gizmo,

 

I totally agree. I'm not stressing over it too much because I have seen some improvement in the past few months. This leads me to believe that the numbers will return to normal in time. Now if it gets too extreme then I will definitely seek out medical advice. But under no circumstances will I start taking any steroids unless it's life threatening. I'm hoping to see major improvements at the one year mark should these sx reach that far. So far I'm almost 7 months off and I'm healing slowly. Have you noticed any kind of improvement in your lupus symptoms? I noticed you've been off for almost a year now. That's a tremendous accomplishment I must say!

Gizmo,

 

I totally agree. I'm not stressing over it too much because I have seen some improvement in the past few months. This leads me to believe that the numbers will return to normal in time. Now if it gets too extreme then I will definitely seek out medical advice. But under no circumstances will I start taking any steroids unless it's life threatening. I'm hoping to see major improvements at the one year mark should these sx reach that far. So far I'm almost 7 months off and I'm healing slowly. Have you noticed any kind of improvement in your lupus symptoms? I noticed you've been off for almost a year now. That's a tremendous accomplishment I must say!

That's a hard one to answer. I'm what they call a complacated case.  I have several issues, lupus, fibro,thyroid,possible diebeties,and damaged CNS from klonopin.The problem is, many of the sx are similar to each other. I think the only times I've noticed lupus flairs is when I'm in the sun or under flourescent lights for several minutes, I get very nauseated. The other times is when I've tried to go off prednisone, major shoulder joint pain. I want to go off or down on the prednisone. I almost ready to start another taper. I just want to wait till I see definate progress on my benzo sx.  This by far are the worst sx I've had  because there is nothing to treat or speed things up. Only distractions and time

Gizmo,

 

I totally agree. I'm not stressing over it too much because I have seen some improvement in the past few months. This leads me to believe that the numbers will return to normal in time. Now if it gets too extreme then I will definitely seek out medical advice. But under no circumstances will I start taking any steroids unless it's life threatening. I'm hoping to see major improvements at the one year mark should these sx reach that far. So far I'm almost 7 months off and I'm healing slowly. Have you noticed any kind of improvement in your lupus symptoms? I noticed you've been off for almost a year now. That's a tremendous accomplishment I must say!

That's a hard one to answer. I'm what they call a complacated case.  I have several issues, lupus, fibro,thyroid,possible diebeties,and damaged CNS from klonopin.The problem is, many of the sx are similar to each other. I think the only times I've noticed lupus flairs is when I'm in the sun or under flourescent lights for several minutes, I get very nauseated. The other times is when I've tried to go off prednisone, major shoulder joint pain. I want to go off or down on the prednisone. I almost ready to start another taper. I just want to wait till I see definate progress on my benzo sx.  This by far are the worst sx I've had  because there is nothing to treat or speed things up. Only distractions and time

Got some more results back and dsDNA IgG = 216.3 where below 200 is the normal. He said I borderline have Lupus? He said it's not significantly high to worry about. I told him I want to have the same tests performed in 3 months to see if the numbers go down. He recommend I take a prescription called Plaquenil. Anyone familiar with it?

 

 

Future Reference (Will compare in 3 months)

ANA Titer= 1:320A (< 1:80 Normal)

dsDNA IgG = 216.3 (< 200 Normal)

IgA = 406 (70-400 Normal)

IgG = 1633 (700-1600 Normal)

 

Honestly my worst symptoms are the joints in my thumbs and spinal muscle pain. Nothing is really painful and it's gotten better as the months go by. I'm wondering if this is just a temporary flare up. Regardless I will perform the other tests to see where I stand with this. It's possible I don't have lupus. Or at least I hope not.

Lupus and fybro sx are similar to benzo wd sx. My guess is if your sx started with benzo wd and are getting better as benzo wd do with time, that's what it is. A positive ANA does not mean you have lupus. The 2 most common meds they give you to treat lupus is plaquenil(anti malaria medication)and prednisone. If your inflammation is going away with time,why would you need he meds? All a rheumatologist does is manage your meds.,so the lupus people say.

A good lupus web is wehavelupus.com

 

 

 

                                                                        I went off plaquenil after 11 years.They thought it might be causing tinnitus.  Plaquenil from what I've read is really pretty safe.There is lots of info on line about it. The worst side effect,which is very  rare, is an eye disease. They will test your eyes every 6 months if you go on it. They usually start lupus patients on it before they would give prednisone. I glade I'm off it. I actually started a taper on prednisone today.I want to get down to 7 1/2 mg. I would not try any new meds till your done with your benzo wd sx. UNLESS the pain can't be managed any other way.The sx you have could be from the benzos,including your positive test results. They may go away.

Yes, my dsDNA was many times higher than normal, then it came down to borderline and the last time it was tested, it was slightly below the acceptable range.

 

I have an Rx for plaquenil. I took it a couple of weeks and couldn't tell a difference so just stopped. It's an old antimalarial drug. They don't even really know how it works, which can't be good. That always makes me nervous.

 

Give this some time. See how it plays out. Like Gizmo so wisely says, try not to start anything new right now.

 

Flip

Thanks for the feedback guys. Gizmo is definitely correct when he states that all rheuma doctors do is supervise prescriptions. This is my 3rd time seeing this particular doctor and I swear he has not done crap for me. Every single time he keeps performing new tests. He comes in and checks the same places in my hands and knees and then goes straight to the computer and checks the results. He basically reads the results to me and tells me I have antibodies attacking my nerves and that I have inflammation. No shit sherlock, I understand what high means. Then I'm the one that tells him that I'd rather wait 3 months and get tested again instead of taking drugs. Then he goes, yeah that's a good idea. Jesus Christ all these doctors I have been to are a joke. Once I'm healed, the only reason I will have to visit a doctor is to perform tests and nothing more. I'm so thankful for BB and all the knowledge I have gained.

Got some more results back and dsDNA IgG = 216.3 where below 200 is the normal. He said I borderline have Lupus? He said it's not significantly high to worry about. I told him I want to have the same tests performed in 3 months to see if the numbers go down. He recommend I take a prescription called Plaquenil. Anyone familiar with it?

 

 

Future Reference (Will compare in 3 months)

ANA Titer= 1:320A (< 1:80 Normal)

dsDNA IgG = 216.3 (< 200 Normal)

IgA = 406 (70-400 Normal)

IgG = 1633 (700-1600 Normal)

I took some Plaquenil after Rheumy told me I have Lupus which I don't.  I was in tolerance w/d when I took it so made me feel worse, spacey and depressed.  But, if off benzo's maybe it would be different.