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Old 09-10-2007, 05:10 AM   #1
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Exclamation HELP...antibodies super high

someone please help me understand what's going on. My ANA is 1483 and all the other antibodies are high also.My doctorsaid he has never seen blood work this high and he doesn't know what's wrong.I have no physical signs and I don't want to wait until then,either. WHAT TO DO???
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Old 09-10-2007, 09:01 AM   #2
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Re: HELP...antibodies super high

Krazy, the first thing that comes to mind is if you doctor has not seen an ANA that high you need to find another doctor. My story is long and it has been going on for the last two months and I won't go into all that now but I have been through some very bad doctors and one that didn't even know what an ANA test was and said she wouldn't sign a release from work because she thought I was fine. Long story short, I found lout last Friday my ANA is 1200 and that is while on Prednisone (prescribed by a different doctor) which I believe suppresses the ANA. So I believe now that I am off the Prednisone it could be way higher. I have been to a neurologist and he personally called on his cell phone a Immonologist/Rheumatologist when he saw my ANA and got me sqeezed in for this week. You mention you have no other symptoms. I have had extreme fatigue for several months, pain in muscles and joints and dizziness. Maybe your ANA was a false positive and needs to be rechecked. Mistakes do occur. But if I were you I would forget that family practitioner for now and go to a specialist that has seen an ANA that high before. Good luck and God Bless.

 
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Old 09-10-2007, 10:18 AM   #3
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Talking Re: HELP...antibodies super high

I just had the ANA checked and that's when he said that about never seeing before...he's suppose to be an neurologist and rheumatologist and has dealings with this all the time. I don't know.. I am seeing an other Dr. in a week. Until then I will not take any meds. Thank you for you response, keep in touch. God Bless You
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Old 09-10-2007, 06:45 PM   #4
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Re: HELP...antibodies super high

Krazy, I began being ill to the point I couldn't go to work about 6 weeks ago. I have gone thru a couple of doctors that didn't know what the heck they were doing. I will leave it at that because the story is really very long and it makes me angry everytime I tell people what happened with these doctors. If I had listened to them I would have been sent back to work on be on steroids. It just so happened I knew someone with Lupus and I had heard of an ANA test. I asked one doctor if she would do one and she didn't know what it was and treated me like I was stupid and angry that I had even asked. She being the doctor knew more than I did of course. Anyway, my point is it is an understatement for me to say we have to be our oun advocates. If you get that feeling that maybe the doctor is not sure or guessing go find a new doctor. I am blessed to live near Houston where we have a wonderful Medical Center. When my mother got cancer I made her go there (and I mean I had to make her) she wanted to go to her little hospital near the house because it was conveinient. When my father got leukemia back to the Med Center we went. Now I will not go to any doctor other than those that come highly recommended and/or are part of a team. The doctors I see now are all part of Baylor.
Do you live in a large or small town? You can also check doctors out online before you even go. I don't know, maybe someone else on here has some suggestions in making sure you are going to a good doctor and not just a quack.
By the way, I found out Friday my ANA is 1280 and that was a blood test taken while I was on Prednisone (a steroid ) so it is according to the doctor really higher than that. I have an appt. with an Internal medicine/reuhmy on Thursday. Oh and the test was speckeled. I think that's not too good. Did they tell you if it was speckeled or homon.?

 
Old 09-11-2007, 01:18 AM   #5
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Re: HELP...antibodies super high

Hi, Krazykai & good morning. Do you have a copy of these test results, plus any done BEFORE starting Prednisone? I ask because most labs show *reference ranges*, which would help you see WHICH tests are the most elevated (vs., say, only mildly).

FYI, ANA elevates in a quite a few diseases OTHER THAN lupus, like scleroderma, Sjogren's syndrome, Raynaud's, rheumatoid arthritis, antiphospholipid syndrome, autoimmune hepatitis, myositis, ETC. Also, it can elevate due to simply a passing virus or to a family tendency.

Also, try to find out the ANA pattern, just as "justpeachy" suggested. The reason is that the pattern can substantially narrow down the list of candidates.

Here's a new question: are you on any drugs OTHER than Prednisone? There's quite a list that can cause what's called "drug-induced lupus", abbreviated DILE. Also, certain drugs can exacerbate existing lupus.

Did your rheumie also get urinalysis done, to look for kidney markers? (Don't panic! Urinalysis is typically done for ALL of us, pre- & post-diagnosis.)

There's an excellent lupus hardcover by Dr. Daniel Wallace. He makes a special point of mentioning that Sjogren's Syndrome is known for producing the HIGHEST autoantibody levels that drs. see, i.e., for ANA & anti-Ro. This is a great book overall, by the way. And another noted author is Dr. Robert Lahita. You can't go wrong scanning both for info that may help.

I hope you post more when you've gathered more info---or anytime you feel like it, actually! Meanwhile, best wishes to you, from Vee

 
Old 09-11-2007, 05:11 AM   #6
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Re: HELP...antibodies super high

Quote:
Originally Posted by VeeJ View Post
Hi, Krazykai & good morning. Do you have a copy of these test results, plus any done BEFORE starting Prednisone? I ask because most labs show *reference ranges*, which would help you see WHICH tests are the most elevated (vs., say, only mildly).

FYI, ANA elevates in a quite a few diseases OTHER THAN lupus, like scleroderma, Sjogren's syndrome, Raynaud's, rheumatoid arthritis, antiphospholipid syndrome, autoimmune hepatitis, myositis, ETC. Also, it can elevate due to simply a passing virus or to a family tendency.

Also, try to find out the ANA pattern, just as "justpeachy" suggested. The reason is that the pattern can substantially narrow down the list of candidates.

Here's a new question: are you on any drugs OTHER than Prednisone? There's quite a list that can cause what's called "drug-induced lupus", abbreviated DILE. Also, certain drugs can exacerbate existing lupus.

Did your rheumie also get urinalysis done, to look for kidney markers? (Don't panic! Urinalysis is typically done for ALL of us, pre- & post-diagnosis.)

There's an excellent lupus hardcover by Dr. Daniel Wallace. He makes a special point of mentioning that Sjogren's Syndrome is known for producing the HIGHEST autoantibody levels that drs. see, i.e., for ANA & anti-Ro. This is a great book overall, by the way. And another noted author is Dr. Robert Lahita. You can't go wrong scanning both for info that may help.

I hope you post more when you've gathered more info---or anytime you feel like it, actually! Meanwhile, best wishes to you, from Vee
I'm not taking anything, he wants me to start Plaquenil 200m X 2. I was taking Triglide and Lipitor. He said they could be causing my joint pain.No I haven't been taking any other meds.My labs say I have 100% mixed connective tissue diseases and neonatal lupus.
I llive in southern Illinois and I am going next week to see my old GP, in Bloomington-Normal,Il.It's really scary to see what's on paper and the dr. telling you he doesn't know what up. I am afraid to take anything until we know for sure..
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Old 09-11-2007, 10:49 AM   #7
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Re: HELP...antibodies super high

You can't have neonatal lupus. You may give birth to a baby with neonatal lupus since you are Ro SSA positive, but neonatal lupus is by definition lupus that effects newborn babies to mothers with the Ro antibody. If they have diagnosed you with that....run

Erin
Dallas

 
Old 09-11-2007, 02:47 PM   #8
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Re: HELP...antibodies super high

Hi, again. Some statin drugs (cholesterol-lowering drugs) have been implicated in DRUG-INDUCED lupus. You may want to ask your drs. to look at that possibility immediately. Also, the fact that you are on TWO such drugs may up the odds somehow...?

You could search on "DILE" to see what you find, using the search box above.

Good luck. I hope your drs. jump all over this. Best wishes, Vee

 
Old 09-12-2007, 10:31 PM   #9
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kidd123 HB User
Re: HELP...antibodies super high

Hi KK... Just wanted to reassure you about the high ANA. Last year when I was diagnosed with SLE, my ANA was over 5000! Now after going off of the diuretic that I was on and taking 200 mg/day Plaquenil, my ANA is only 640.
My rheumie is thrilled for me and I do feel MUCH better. I hope that you will
not stress about taking Plaquenil, as it has helped me feel better. God bless you as you try to get better.

 
Old 09-13-2007, 01:29 AM   #10
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Re: HELP...antibodies super high

Krazykai, Do your labs indicate that you are positive for anti-Ro? I ask because you cite "neonatal lupus", which is really the kind of lupus when the antibodies pass the placenta to a *newborn*, as Erin stated.

But--- [drum roll] anti-Ro is ALSO considered quite characteristic of two OTHER autoimmune conditions: (1) the subacute cutaneous lupus erythematosus "subset" of lupus (abbreviated SCLE); and (2) of Sjogren's Syndrome. Also, some people with the autoantibodies heavily associated with classic SLE can ALSO develop anti-Ro antibodies.

Has your dr. discussed these possibilities with you? FYI, you can use the Search Box in the upper left to look up SCLE and Sjogren's, to get your feet a little wet on both.

Further FYI: there are others in the group here who've tested positive for anti-Ro, including me. I was Dx'ed with SCLE some years ago. Depressingly, I'd read more about it than my local drs. had, or so it seemed, which is a pretty bad joke when you think of it! So that's why I highly recommend the Search Box! I hope you keep posting with your thoughts & questions, as it's so difficult to wade thru this stuff alone. Bye for now, with best wishes, Vee

 
Old 09-13-2007, 04:38 AM   #11
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Re: HELP...antibodies super high

Quote:
Originally Posted by VeeJ View Post
Krazykai, Do your labs indicate that you are positive for anti-Ro? I ask because you cite "neonatal lupus", which is really the kind of lupus when the antibodies pass the placenta to a *newborn*, as Erin stated.

But--- [drum roll] anti-Ro is ALSO considered quite characteristic of two OTHER autoimmune conditions: (1) the subacute cutaneous lupus erythematosus "subset" of lupus (abbreviated SCLE); and (2) of Sjogren's Syndrome. Also, some people with the autoantibodies heavily associated with classic SLE can ALSO develop anti-Ro antibodies.

Has your dr. discussed these possibilities with you? FYI, you can use the Search Box in the upper left to look up SCLE and Sjogren's, to get your feet a little wet on both.

Further FYI: there are others in the group here who've tested positive for anti-Ro, including me. I was Dx'ed with SCLE some years ago. Depressingly, I'd read more about it than my local drs. had, or so it seemed, which is a pretty bad joke when you think of it! So that's why I highly recommend the Search Box! I hope you keep posting with your thoughts & questions, as it's so difficult to wade thru this stuff alone. Bye for now, with best wishes, Vee
my RO is SLE-25-35%
Sjogren's Syn. 40-70%
Neonatal Lupus- 100%
and my RNP is Mixed connective tissue deseases- 95%
SLE- 30-50%
Dermatomyositis 20%
I am going Monday to another Dr. for a second reading on this. I don't feel sick I do have problems with my anckles and wrists, of corse I stay tired.
Thank you for your help.God Bless You
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Old 09-13-2007, 05:36 AM   #12
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Re: HELP...antibodies super high

Krazykai, I'm guessing different labs have different styles of printouts. On all my labs, specific autoantibody (etc.) tests are listed, e.g., ANA, anti-ds-DNA, anti-Sm, anti-Ro, anti-La, anti-RNP, RF, etc. Then, for each, a numerical result, the normal range, and an asterisk if the result was outside normal range. I've also gotten footnotes suggesting that the dr. run additional tests as specified.

I've never seen test results expressed as a disease (or subset) with a percent attached, BUT all the results you cite sure seem to point to lupus & various "close cousins". So good luck with your Monday appt. Is this dr. a rheumatologist? Hang in there, OK? Sincerely, Vee

 
Old 09-13-2007, 10:51 AM   #13
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Re: HELP...antibodies super high

Quote:
Originally Posted by krazykai View Post
my RO is SLE-25-35%
Sjogren's Syn. 40-70%
Neonatal Lupus- 100%
and my RNP is Mixed connective tissue deseases- 95%
SLE- 30-50%
Dermatomyositis 20%
I am going Monday to another Dr. for a second reading on this. I don't feel sick I do have problems with my anckles and wrists, of corse I stay tired.
Thank you for your help.God Bless You
Krazy, that is not a diagnosis but a specificity for that antibody.

Basicly what it is saying is that
Anti Ro is present in the following conditions in the followin percentage etc. This means that 25-35% of those with SLE will have Anti Ro and so on and so forth. This is why Neonatal lupus is shown since this only will occur in newborns when you have a mother with this antibody.

The RNP is the same thing, it is giving you the specificity of that antibody.

I hope this helps a little to understand the results.

Erin
Dallas TX

 
Old 09-14-2007, 07:16 AM   #14
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Re: HELP...antibodies super high

Krazykai, Erin definitely nailed it! [Hi, Erin!] This type of info is printed out *conditionally* on some lab results, to narrow your doctor's focus & put a fire under him/her. I say "printed conditionally" because specific text is flagged for print when a given value is positive; but if no tests were positive, presumably NO footnotes will print out.

I'd forgotten I'd had such footnotes on my own labs. For a long time, my labs reminded my GP to look into causes for B-12 & Folate anemia. But DID my GP follow through? Or give me copies of the labs, so I'd be aware of the problem? No---that would have been too logical.

Absence of footnotes doesn't necessarily mean all is well. For example, my sister's GP failed to request thyroid tests. For six years she assured me her labs were "clean". Yes, but her labs would likely NOT have been clean had her GP ordered the thyroid tests that would have identified her problem.

So... I really hope you can use Erin's clarifications to have a better 2nd opinion appointment. Let us know how it goes, when you have the time, OK? WISHING YOU GOOD LUCK! Best wishes, Vee

 
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