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-   -   ANA high due to IVIG?? Nah, can't be. (https://www.neurotalk.org/peripheral-neuropathy/83813-ana-due-ivig-nah-cant.html)

cyclelops 04-09-2009 05:44 PM

ANA high due to IVIG?? Nah, can't be.
 
Does any one have any idea if IVIG would give you a high ANA? Mine is at 1:1280 (yes I know, that is high). It may be higher but they only titrate this high.

I don't think that IVIG infusion once per month would INCREASE my ANA. My thought was that this brings down inflammation. Once before I had a very high ANA elisa and it was while not on IVIG. I think they are utterly unrelated. Frankly, I think more IVIG is indicated to bring this down.

All my specific tests are STILL negative, except for that high CD4+ T helper cell test, and that makes sense. A high ANA means inflammation and T helpers are the inflammers. (Gosh wasn't there a band named that....no, wait, it was the Proclaimers. "I would walk 500 miles and I would walk 500 more.....) You can see this inflammation is having brain effects.

Well, any professorial dissertations on what is going on with my immune system would be welcome. (Yes, I realize it is insane).

Other than IVIG, I am trying to get by with just Vicodin, which isn't doing it....clonazepam because this is making me darn nervous these days. Occassionally I use erythromycin, and I mean occassionally to make my stomach move. I just started some naprosyn after I had the ANA because for some reason it makes my joints feel better, but I spit up like a baby on it.....I tried prilosec to stop that but I get nightmares....(yes, weird I know). Oh, I have that bowel stuff....Miralax, Benefiber....and I have Restasis. I do not think any thing I am ingesting or injecting or in any other manner sticking into myself would cause my ANA to be high. Call me crazy, but I think I am sick and have autoimmune disease.....'of some type'.

My fingernail has whittled its way almost totally off and I have this hard white scale where a nail once was and the joint is swollen and hurts...most of my joints really hurt.

I can not get any one to look me in the eye when I bring up my old case of Lyme. They squrim when I ask about sarc. Anyway.....IVIG causing high ANA??? Any thoughts?? (I doubt it does that, but I am open to opinions)

mrsD 04-09-2009 06:08 PM

Two ideas for the fingernail....

1) yeast (candida)... may respond to liquid clotrimazole (Lotrimin) applied topically. You most likely would have to special order this at your pharmacy. They don't put it on the shelves anymore.
Twice a day --a few drops.
A swollen joint should be seen... could be some other infectious process IMO.

2) Psoriasis.... this would make the joint swell as well. But only one finger is odd... others would be typically affected.
My husband's grandfather had psoriasis of the nails... really icky looking!

The fact that you have only one affected, suggests a local problem, and not systemic. If many or all were affected that could be something else.

I smashed one finger with a rock last fall by accident working on the rock garden. Its nail is not doing well. I suspect it will not be normal much longer.
It has a long vertical indentation in it, and now it is splitting alot. It throbs sometimes in the night. There is a small lump above the cuticle, but otherwise it looks normal. It is the same finger my father smashed in a car door when I was young. Its never been normal looking...so I guess now it is dying too. It was broken at the first joint, then, and is a little deformed looking.

Raglet 04-09-2009 06:32 PM

hi there

I am not sure if IVIG is on the list of drugs that can cause a positive ANA, but there are definitely a lot of drugs that can. As ANA's double at each dilution, they become high very fast and are not reflective of disease severity or disease activity, they are just a marker that means that further testing has been done. My ANA tends to sit around 1.1280 - 1.2560. My disease activity is reflected by my anti-ds-dna's (I have lupus), and my ANA's stay the same not matter how sick or well I am at the time.

Have you seen a rheumatologist for an opinion? Otherwise, that could be a good thing to do so you could get further testing done.

the main thing is to remember that if your ANA is indicative of autoimmune disease, all it means is that you have a strong positive ANA, it doesn't mean that you are more (or less) ill than someone whose ANA is, for example, 1:360. Some rheumies do the ANA once, and if it is positive, never do it again as it doesn't reflect the clinical picture.

It makes sense to have full testing done - but ANA's are funny things and some people who don't have autoimmune disease have a positive ANA and as your doctor has already told you, various drugs can cause a positive ANA.

How long are you going to be on the IVIG ? If your ANA is drug induced, then it should disappear within a few months of stopping the infusions.

In your shoes I would get myself monitored by a good rheumie and see how things develop over time. Unfortunately, when labs are not conclusive, the diagnosis trail can be long. In lots of way I am very lucky as my blood work is classic for lupus (and SS and APS).

hth

raglet

cyclelops 04-10-2009 11:42 AM

thanks for the info.

I have a rheum. He is the one who found the high ANA...he said it could be higher, but they only dilute to 1,280. I have had 3 high ANAs, but nothing else is + except that my T cell count the CD4+ are high, as are lymphocytes. My biopsies that they have from all over do not look good.
+ Neuropathy, +myopathy, + for lymphocytic infiltration of minor salivary glands, + for Lyme back in 1994....now only Igenex is +, and docs won't accept that here. Lungs have reticular changes in the apices but pulmonologist thinks that is nothing, but she knows nothing of my other history....she is just looking at that piece of me. Lots of torn ligaments, bone issues, RLS, gastroparesis and esophageal problems, constipation, really sore rib cage, spinal pain, arthritis and arthropathies all over....oh it is such a bore. I don't even want to mention more. It is obviously some T helper cell over reaction which is likely autoimmune, but, it would be nice to not be sitting in that group of thousands that don't fit in the 'known' diseases with seropositivity. It is frustrating for the people and there are a lot of them who have this 'undifferentiated connective tissue disease'. Oh well, thanks for bearing with the rant. In a few weeks, the nail will be diagnosed....it has only been a year!!

They checked me out pretty well, so I think the high ANA is just that, and has nothing to do with IVIG. I saw a heme, and man, he drained me dry, and he got me to the pulm and the rheum. I have a regular neuro whom I like.

With my high immune stimulation, I would think that yeast is not too likely. Several derms looked at it. Had solutions like stick dental floss under the nail. Well, now the nail is gone. There is about a quarter inch left. I cut off the rest. Under that part of the nail is white, dry hard stuff. I see the same derm again in early May (the floss one). They will biopsy at that time....and I have a list of what I want looked at. Yes the joint is involved or at least the pressure from the nail thing is pushing on the joint.

I was just wondering if any one on IVIG ever heard of it boosting your ANA. I would assume it is just a coincidence, and that one has nothing to do with the other, and this is a random high ANA, which just backs up the fact that this is autoimmune.


Thanks.

dahlek 04-10-2009 12:40 PM

I've had weird blood tests right after infusions?
 
Running the gamut from sudden hepatitis to hemachromatosis! Usually about/within 4-15 days after my infusions [every 4 weeks] All dissapated after a couple of weeks tho. WHEW!
I Mention these as they were, I think linked to infusions/infusion responses and test timing. Not to mention stressors about a whole bunch of other med issues, as yet, unresolved. Know where you are coming from!
Curiously, I've not had a ANA test in ages! I think it mite be time for me to sort of have a serious ASK? NO? KICK ME PLEASE!
As for your results? All I can say is down right 'unusual'!
Not to mention scary to boot.
All I can suggest is to quiz the docs about any specifics and 'what can I do's' For the future tho, get copies of those test results and try to become a hematologist? Poke poke poke Let them know you aren't a doormat...tho I suspect they've gotten that impression by now.

Take a good look also at whatever IG brand you are using-web up the prescribing information..then feel free to pick their minds using the 800 phone #'s! I have found these #'s very useful at times...and they have access to the good stuff-you know what I mean! This is NOT a time to by shy! ASKING AND KNOWING are key to getting the best treatments that are available!
:hug::hug:'s - j

cyclelops 04-10-2009 08:24 PM

Hi J

The doc did not say it was due to the IVIG. He said, he wanted to check with the neuro giving it just to make sure. He seems to think it is just the typical very sky high ANA, due to my seronegative Sjogrens, altho, there is no such thing as seronegative Lyme.....if you get my drift. :confused: i was just wondering if any one had ever heard of this kind of thing happening...you know, that "one in a million normal reaction" to something. I think I have at least 5 one in a million, rarities. Darn, still can't win the lotto.:p

This is the 3rd high ANA, 2 of them have been off the chart. It doesn't really help define WHAT this is, only that it is inflammatory.

I would be highly doubtful that an elevated ANA would happen from IVIG. It is supposed to modulate the immune system. I expect what is causing the high ANA is also causing the high CD4+ T helper cells.

Hmm, so that must mean this PN is certainly inflammatory.

I think they should name this disease after me....the pulmonologist said that would be fine. She was having issues with finding Sarc in the scar tissue of my lungs.....not enough for a granuloma??? Let's see, that is the size of a grain of sand. Well maybe my fingernail will have better diggings than my lung....I don't want my lung dug around in anyway.

This new rheum I have concurred that he never saw a more impressively infiltrated minor salivary gland. There are too many lymphocytes to 'score' it.....basically it looks like more lymphocytes than salivary tissue.
Ah yes.

Life is confusing. But my new adorable 7 week old grand daughter is keeping me happy. I get my 'baby fix' when I get blue. My son and his wonderful wife indulge me to the max. I can cuddle and coo. Then when she poops I had her over.

Raglet 04-13-2009 04:01 AM

sjogrens also comes with additional symptoms like joint problems etc etc, so that could explain it all, plus the ANA. Has anyone suggested a lip biopsy ? I read someplace (but could never find it again) that the higher ANA's tend to be associated with Sjogrens, but who knows.

Sometimes, as frustrating as it is, all that can be done that is to follow a person over time and see what develops. Your symptoms certainly are suggestive of something autoimmune going on. The good news is that in terms of treatment it doesn't really matter if they come up with a dx or not, as these diseases are treated symptomatically so you can still receive all the treatment that you need even if you are undiagnosed. I have a cast iron dx, but am still treated symptomatically as that is really all that can be done.

cheers

raglet

mrsD 04-13-2009 09:25 AM

I found a really good set of pictures of typical nail medical problems....

http://hooked-on-nails.com/naildisorders.html

This link mentions that a T-cell process may underlie psoriasis.
http://emedicine.medscape.com/article/1107949-overview

My husband has moderate psoriasis and it cleared up with Dovonex and
Aquaphor. He does not have nail issues yet. But his grandfather had
terrible nails after his stroke. On all his fingers!

cyclelops 04-13-2009 07:20 PM

Thanks for the pics. At first it looked like oncholysis, like on the Dermznet site.....now it looks like the psoriasis one on this site you posted. The whole darn finger above the DIP joint hurts like $%^&. It hurts worse behind the finger in the palmer aspect, so this crud is somehow affecting the joint. Anyway, thanks for looking at it for me. I have 2 more weeks to wait for the derm deities to tell me it is yet another rare and benign condition. If you know what I mean.

Also to the prior poster to MRSD...yes, lip biopsy is very positive as were all the eye tests....as was a biopsy for neuropathy and myopathy, also lungs have reticular changes, flunked a ton of autonomic tests and have cardiac abnormalities. So it is not unexpected that the ANA would be high. It has been high before. The CD4 T helper cells and lymphocytes are also high. I am wondering if I need more IVIG? Or if they need to add something else, but what that I can tolerate....that is the question. It is Sjogrens without the blood marker....which is a disese, but, not my Lyme without the blood marker, that is a non-disease. Which makes me wonder where these doctors heads are when they come up with these blood marker ideas. Thanks for your thoughts. I know a lot of brain power has over the years gone into helping me solve my dilemma.

In the end, it appears that autoimmunity was the cause of my idiopathic small fiber neuropathy. I think even Glenntaj narrowed that down to autoimmune mimicry from the Lyme ( which could also be called sarcoidosos, neurosarcoidosis as easily).

Treatment is all pretty much the same.....I am sticking with IVIG, as it has done the most good, but it will be a fight. I do believe my dose needs some increasing but not at the risk of losing what I get. I may have to add some other T cell hammer that I can tolerate.

I am absolutely exhausted to the point I refuse to feel guilty for laying around and for even being bedbound here and there. I do have 'good' days. I am closing in on my next IVIG, so this may be my issue....that or I ate too many peeps.:thud:

Hope15 04-16-2009 12:52 PM

Pardon my ignorance here. My recent ANA test was negative, as was testing for Lupus and Lyme. Can someone explain what a negative ANA means? Does it cover specific autoimmune conditions? Thanks....

cyclelops 04-16-2009 06:55 PM

You don't have any antinuclear antibodies. Those are found with most of the autoimmune diseases. They tested you for those things to see if an autoimmune condition was causing your neuropathy or condition (I don't know what your condition is). If it is a ratio of 1:40 or less, it is considered negative....it titrates up to 1:1280 or if they put a > sign in front, it means they still saw immunoflorescence at a dilution of greater than 1,280 and it could be much higher, but most people don't get up to 1280, so they don't bother....in other words, >1:1280 means you have as high of an ANA as they expect to ever see.

It is non-specific which means, it says only, 'you have an autoimmune disease" and gives no info as to which one.

So they test for other ones. There are the usual rheumatic ones and then there are neuro ones, and if I had the umph to irritate my neuro I would have him run those....but I have no umph. My Anti-RNP/SM was within normal limits but closer to the higher limit than low. That one is for MCTD.

Lyme is obviously negative. As some one who had a perfect case of Lyme and has a negative titer now....man, show me some one with a positive case that has not had it done at Igenex...Yes, mine is + from Igenex. So ruling out Lyme with a blood test, only gives the medical community some kind of comfort. It may mean nothing.

Lupus is usually ruled out on the basis of your ANA titre....how high it comes in. Keep in mind they titer it by about 40. So 1:40 is negative, 1:80, 1:120, 1:160 all the way up to >1:1280....are possible results. They look at that and then your complements, C3, C4, C50 and make a decision on if you look like it could be Lupus. Also, Lupus has other symptoms such as Malar Rash. I have a low C4, depending on which lab is used....so I look kind of Lupusy now, but because I had a bad looking minor salivary gland, and dry eyes, they somehow decided it was Sjogrens...but seronegative, back when this started.

Now they don't know what to call it. The sicker I get, the less they seem to know about it....HMMM. Eventually a smoking gun will show up. Actually, I should not say they know less, they know it is autoimmune....at one point it was 'idiopathic', then it was 'hereditary'.

Finding the cause of a small fiber neuropathy can take years, even a decade.

Also ANA is not stagnant. It can move from low to high.

I hope that helps. Answers don't usually come real quick for many of us. You will learn a lot about a lot!!

Raglet 04-18-2009 06:19 AM

Quote:

in other words, >1:1280 means you have as high of an ANA as they expect to ever see.
hi guys

I hate to be pedantic, but it is definitely quite possible to have an ANA that is higher than 1:1280 - I myself have had ANA's 1:2580, and have heard of people having ANA's in the 5,000's. Actually, I myself have never heard before of a lab that stops titrating at 1:1280, but it seems that this particular lab does.

My thinking would be that they don't think it is worth the expense of continuing to tirate beyond 1280, as increased levels don't mean increased sickness, so it is not medically relivant to know what the highest level a person would test out at. an ANA of 1:1280 is a good strong positive, so nothing is achieved by continuing to titrate.

Titres double each time - 40, 80, 160, 320, 640, 1280 etc so numbers get large very quickly.

I have had lupus since I was 12, so I have been tested on this scale for many many years. Also, there is a newer way of testing ANA's that gives a single number and a vastly different scale than the old ratio's.

Titres like 1:80 and even 1:160 are pretty much ignored by rheumie's, as they often occur in healthy populations who do not have associated disease. These false positives increase with age. Rheumies usually like to see an ANA of at least 1:320 to dx unless there are compelling symptoms or other antibodies that support a dx.

The ANA is a screening test and if positive further testing is done. The most specific thing for lupus is the anti-ds-dna antibody, and if present it pretty much clinches the diagnosis of lupus. Over 95% of people with lupus have a positive ANA, but most people who have a positive ANA don't have lupus, if you get my drift, as lupus is only one of a variety of possibilities if a person has a positive ANA.

Ok, that's my take on this stuff having been around the block a few times with antibody tests ..... my dx with lupus was made very easy by high levels of both ANA's and anti-ds-dna's, althought I have lots of other antibodies as well.


cheers

raglet

cyclelops 05-03-2009 08:49 PM

Hi Raglet,

Thanks for your take on this. The doc said, indeed, the ANA could be far higher, and he suspected it was. It was speckled.

I had an rnp of 16.2 on a scale of 1- 24.9, and I thought it had to be over 24.9 to be 'high', but I read that 0-15 was normal, and 15-24.9 was borderline and 25 and up high. But that is not what this lab or what this doc said. He ignored this totally.

Then the SSA, was 9.5, in the same range of 0-24.9. That seems lower than the Anti-rnp/sm. So why do they go to the seronegative Sjogrens? Hmm

My anti/sm was only 1.1

I have some other oddities with eosinophils and basophils, but they are not the kind that knock you out.

So my question on elevated ANA is really, what does it mean?? I have high T4 (helper) cells, and low T8 (suppressor) cells.

Does any of this ring a bell to you??
I had one ANA Elisa, perhaps that is the one number one, come back 2.57, which the doc said was quite high.

My history is hideously complex, and the major only symptom, I have not had in the connective tissue disease clusters, is malar rash. I am getting sicker and wondering when it is time to do the more toxic treatments. I don't have a life. My insomnia has now given way to horrible fatigue and sleeping. All symptoms seem to be getting worse, with the exception for a week after an infusion of IVIG. I am getting pretty depressed now and wondering how long this is going to go on. This year, putting in the garden, my family had to do most of it. I could not do it.

I have not tried anything too strong, because my neuro feels I will get sicker from it, which is a possibility. I have done very poorly with meds....what to do, what to do. I don't even fully know what I have. Do these repeated ANAs being high, definitely mean this is no doubt autoimmune.....or does this mean there is a possibility of inflammation that is not autoimmune?

My rheum is in a 'duh' mode. My neuro is in his, 'I am published in seroneg. SJS mode' and my Internal Med, who is my primary is the only one concerned, and she feels it looks like MCTD. I am starting to care less about what it is, feeling less guilty about sleeping, less guilty about disengaging, and more like throwing in the towel. Quality of life is hitting the skids.

Raglet 05-04-2009 03:15 AM

Having an ANA of 1:128 is strongly suggestive that something is going on, but it is really only a screening test which suggests that further testing should be done. It doesn't tell you what is going on.

As far as the RNP goes, it is really important to use the reference range that comes with your test results, and ignore any other ranges you might come across on the internet. There are many different tests used which all have different ranges, so just go by the test range your lab used. They will be using the correct range for the test they use. That makes your RNP test negative, which is why your doctor disregarded it.

Sorry I don't know anything about helper and supressor cells, but then I really only know about what I have (lupus, antiphospholipid syndrome and sjogrens). Sounds like you need a good doctor continue with testing and monitor you as it can take time to work out what is going on.

Malar rashes are part of lupus, and of course there are many other autoimmune disease than lupus. And, not everyone with lupus has a malar rash, it is only one of the possible symptoms. Nobody has all of them, we all just have our own particular selection.

hth

raglet


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