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10-16-2012, 08:12 AM   #1
vanilla_chai
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Positive ana

Hi all, I have a question about a positive ana. Over the summer, about a month before surgery, I had the rash on my knuckles get more pronounced. I asked the allergist about it when I was getting an allergy shot and he was really concerned. He told me to go to my gp for a referral to a rhemmy. I went but wasn't a huge fan of yet another drs apt at that point so he did a physical exam and had me get blood done. They never called with results (they only do when there's concern) and surgery distracted me.

Then I got an ear infection a month ago. When I was in I asked about the results. The drs response was that only "the arthritis came back positive but we already knew that". What??? I've had joint stiffness so I questioned him and he basically said not to worry about it and since I was sick, I didn't

Fast forward to yesterday when my allergist was testing me for a sulfa allergy and asked if the rash came back. I pretty much see it the last few weeks before Remicade, he asked if I'd had blood done and I said yes but only the ana popped. He became concerned and asked he # which I didn't remember so he said if it was < 200 don't worry but he'd be concerned with something higher. When I got home I pulled out my lab sheet and it was 1:640 or >

So now I have 1 Dr telling me not to worry about and another that says I should. I know the allergist is worried about lupus BC I shouldn't be getting shots if that is a DX

So my question for everyone is, is there anyway this is just related to crohns? My sed and crp were very low and the path report and surgeon say my resection site was pretty much scar tissue so I should have been in remission when I had the positive ana

I see my GI next week and I'll ask him then but I'm just hoping to understand a bit so I can put it out of my mind till then...

Anyway, if anyone has words of wisdom I'd love to hear them...

Thanks
Ali
10-16-2012, 11:36 AM   #2
Ihurt
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I have had an elevated ANA before. It comes and goes. Do you know what pattern yours was?? Mine was a nucleolar pattern. I think the pattern means something.

Your level of 1:640 is a bit elevated. I have seen way higher though. It definitely should be investigated. Has your rheumy done any specific blood panels? ( i.e. lupus, sclero, RA)?? This will tell them if you have any actual full blown autoimmune issue going on like lupus or Rheumatoid Arthritis or anything else. This I would say should be your first step.

As far as it being related to crohn's, I am not sure. I am not dx yet, I am still waiting to have some tests done. I will say that I have had an elevated ANA and sed rate and C-reactive proteins on and off for the last 9 years. They could never figure out why. They finally dx me with an undifferenciated connective tissue disease( meaning they have no clue what is wrong!).

Hope you get some answers soon. You may have to get different opinions when it comes to the rheumy docs. I went through 3 before I found one who seemed pretty knowledgable.
10-16-2012, 11:58 AM   #3
vanilla_chai
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Thanks for the reply

My type was homogeneous which, from what I've googled, looks like its just a lupus or connective tissue indicator

I'm now wondering if my gp has seen it high before when he said "we already knew that" or if he was mistaking it for a general inflammation marker from crohn's.

Either way, I wish these drs would just talk to each other. Its so aggravating to try to figure out what I need to pay attention to when I have no medical training and it makes it worse when I get different info from each

I actually haven't gone to a rheummy yet, keep putting it off as I try to continue to work full time and my health takes so much time as it is but the time may have come...
10-16-2012, 02:35 PM   #4
Ihurt
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Actually the ANA is not an inflammatory marker. It is an Antinuclear Antibody detector. It just shows that your body is having a autoimmune reaction. I am not sure if this level is usually present normally is people with crohns. I know it is more common in people with lupus, RA, sjrogens, scleroderma, spondylitis and such autoimmune issues. It can also rasie due to side effects from certain medications.

I would not rely on a Gastro doc nor a regular doc when it comes to this. I would definitely see a rheumy doc who specializes in these type autoimmune issues. They will know exactly which blood panels to do on you to rule out certain issues. I know it sucks and it can be frustrating. I cannot even begin to tell you how many doctors I have seen over the last 9 years due to so many health issues. I am sick of doctors already. The only thing I have learned is that most doctors are not very knowledgable when it comes to chronic illness and that there are A LOT of bad doctors out there!! Also, I do not hold a lot of faith in all these tests. I have had so many labs done that has showed different things. I would get worried and then the lab would be done again and it would be normal only to go up again. It has been this way for 9 years. I hate to say it, but it they do all your blood panels and it does not 100% fit any one certain disease, they will probably tell you what they told me, that you have some sort of undifferenciated connective tissue disease. That is just another way of saying they really have no clue!

Good luck and try not to worry to much.









Thanks for the reply

My type was homogeneous which, from what I've googled, looks like its just a lupus or connective tissue indicator

I'm now wondering if my gp has seen it high before when he said "we already knew that" or if he was mistaking it for a general inflammation marker from crohn's.

Either way, I wish these drs would just talk to each other. Its so aggravating to try to figure out what I need to pay attention to when I have no medical training and it makes it worse when I get different info from each

I actually haven't gone to a rheummy yet, keep putting it off as I try to continue to work full time and my health takes so much time as it is but the time may have come...
10-17-2012, 02:38 AM   #5
vanilla_chai
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I'm with you on the ana not being an inflammation marker, I'm just now wondering about the "but we already knew that" comment from my gp. Just not enough to schedule an apt to ask

I think I tend to worry more about missing something than worry I have a specific thing going on. I went 11 years between my first GI symptoms and a def DX. But I also ignored it too long at the end which I suspect lead to the damage needing surgery. So now I'm wanting to be sure I'm not being dismissive about this and causing more problems with the allergy shots.

My GI will be the first to tell me he doesn't know something, I guess I'm still hoping it could just be the crohns, OK, its a long shot but I'll ask

Managing all this stuff is such a pain, and having been on both sides of a DX I'm not sure which is worse. Not knowing will drive you crazy, but I also didn't get an answer till I got sicker. I'm not sure what I wish for here. If I could know without having to get sicker I'd choose that, but with the crohns that just wasn't the case and I spent so many frustrating years in drs offices demanding I was sick and feeling like I'd lost my mind when once again there was no explanation. I'm really dreading going down that road again...

Thanks again for the feedback. Its really nice to talk to someone who has been in a similar place
10-17-2012, 07:35 AM   #6
AIjen
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My ANA is always negative, but according to my Rheumy, it should be positive. With all the autoimmune things I have going on, it definitely should be positive, but isn't. Of course, my body NEVER does what it's supposed to......... Which is why it probably took so long for someone to actually help me out and figure out what was going on. I think it can be present in any autoimmune disease as it shows that you immune system is attacking the wrong stuff. I used to know quite a bit about it, but I haven't read up on anything in a while.
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10-17-2012, 08:25 AM   #7
Ihurt
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Vanilla_chai,

Yes, I totally feel your frustration. It does make it hard with the "not knowing". I am still trying to find out what is wrong with my GI tract! I have been having issues pretty bad for the last year and half already. My gastro keeps saying IBS. He went on vacation for a month so I have to wait until Nov to even see him. I am demanding he do some tests. I saw another GI doc who is in the same facility as my gastro since he is out of town. Well I practically begged for him to order an MRE for me. He would not do it! So now I am seeing my regular doctor to have her order it for me. So I do know what ya mean about getting frustrated.

For you to have suffered for that long and then ended up needing surgery due to neglegant doctors, you should sue! That is crazy, but I am sad to say I am not suprised. I also have IC ( interstitisal cystitis) a nasty painful bladder disease. I actually dx myself before any doctor did. I went through about 3or 4 urologists before I found a urogyne doctor who dx me with the IC. I have had to be my own advocate throughout the last 9 years due to all my health issues. I have had to do the research and find the right doctors and stuff. It has been exhausting. I mean it is sad when people have to do their doctors job for them!

I mean with the elevated ANA, maybe your doctor just made that comment as if saying" well we already know your sick".

One thing I have found is that now with me being sick with so many things, when I go to the doctor or a different specialist, they look at my record( or should I say glance at it), and just kind of shrug me off, saying, well you have a lot of issues going on, it's probably all related. They do not seem to want to deal with it. Thats how it feels. Like even my gastro doc, I am at one of the best leading hospitals here in Chicago and my GI doc kind of keeps on blaming all my GI issues on IBS. I have not even had tests yet! I think a person who goes into see a doctor that is healthy and has no past health issues get taken a lot more seriously than someone who already has other health issues. It sure seems like it's that way. I think they just do not want to have complicated patients that have other health issues. It really sucks.

Anyhow, try not to worry. I would just get an appt. with a rheumy doc so he/she can do some blood panels on you just to see what is going on. It may be just the crohns elevating it too, who knows. Try not to worry to much. I know that is hard seeing as you ended up in surgery due to neglegant doctors. Just get an appt to put your mind at ease. Good luck. Feel free to PM me anytime,even if it is just to vent
10-18-2012, 08:32 AM   #8
vanilla_chai
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I hear you on the frustrations with some Drs. My damage was probably my own stupid fault. I got frustrated with never getting answers and just decided I never would. I didn't go back until it hurt to walk and I was shuffling like an old woman. Even then, coming out of the colonoscopy I was shocked I finally had an answer.

its funny with what I call a professional patient. Some people take me more seriously "oh, you've had a resectioning, ok, so you know what pain is" and some just seem to ignore that. before the resectioning the nurse at the gi's office asked if I was in pain and I said a 1 or 2. Not bad, just a bit uncomfortable. She looked at me like she didn't believe me and then asked if I'd ever really been in pain. I explained I'd had a blockage a few months back and then she took me seriously, but I really hate not being taken seriously.

beyond that, it doesn't help when the tests all come back negative. For my resectioning, I got the blockage, 2 months later they did an MRE, they could see the TI not really opening but since the area above it hadn't dialated like usual they didn't think it was serious. My GI did a pill cam just to be sure after the decision was made that if I was narrowed enough for it to get stuck I was ready for surgery. The day of the pill cam he was telling me he was pretty certain it wouldn't get stuck... um, yeah, it totally got stuck it seems to be my lot in life, just about everything comes back inconclusive

I'll def look into getting a rheumy apt, just have to find the time I've had at least 1 drs apt every week over the past month except for one week when I traveled for work and I have 1 scheduled for the next 2 weeks. Throw in allergy shots and visits to the therapist bc its all so stressful, I'm constantly running around and exhausted.


thanks guys for the feedback. This forum saves me from driving my friends and family nuts with all this stuff
10-26-2012, 11:59 AM   #9
vanilla_chai
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Just to answer my original question, I saw the ibd specialist today and he said crohns will pretty consistently elevate ana so he would never test for it. He did have me see a rheumy just to check out the fatigue, rash and joint pain. I have an appt with her in a few weeks
03-16-2013, 07:03 AM   #10
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Vanilla_chai,

Yes, I totally feel your frustration. It does make it hard with the "not knowing". I am still trying to find out what is wrong with my GI tract! I have been having issues pretty bad for the last year and half already. My gastro keeps saying IBS. He went on vacation for a month so I have to wait until Nov to even see him. I am demanding he do some tests. I saw another GI doc who is in the same facility as my gastro since he is out of town. Well I practically begged for him to order an MRE for me. He would not do it! So now I am seeing my regular doctor to have her order it for me. So I do know what ya mean about getting frustrated.

For you to have suffered for that long and then ended up needing surgery due to neglegant doctors, you should sue! That is crazy, but I am sad to say I am not suprised. I also have IC ( interstitisal cystitis) a nasty painful bladder disease. I actually dx myself before any doctor did. I went through about 3or 4 urologists before I found a urogyne doctor who dx me with the IC. I have had to be my own advocate throughout the last 9 years due to all my health issues. I have had to do the research and find the right doctors and stuff. It has been exhausting. I mean it is sad when people have to do their doctors job for them!

I mean with the elevated ANA, maybe your doctor just made that comment as if saying" well we already know your sick".

One thing I have found is that now with me being sick with so many things, when I go to the doctor or a different specialist, they look at my record( or should I say glance at it), and just kind of shrug me off, saying, well you have a lot of issues going on, it's probably all related. They do not seem to want to deal with it. Thats how it feels. Like even my gastro doc, I am at one of the best leading hospitals here in Chicago and my GI doc kind of keeps on blaming all my GI issues on IBS. I have not even had tests yet! I think a person who goes into see a doctor that is healthy and has no past health issues get taken a lot more seriously than someone who already has other health issues. It sure seems like it's that way. I think they just do not want to have complicated patients that have other health issues. It really sucks.

Anyhow, try not to worry. I would just get an appt. with a rheumy doc so he/she can do some blood panels on you just to see what is going on. It may be just the crohns elevating it too, who knows. Try not to worry to much. I know that is hard seeing as you ended up in surgery due to neglegant doctors. Just get an appt to put your mind at ease. Good luck. Feel free to PM me anytime,even if it is just to vent
Hi All,
I just got diagnosed recently with undifferentiated connective tissue disease. The diagnosis was given in a matter of days. I had an ANA of 1:640 but that was taken almost a year ago - it was overlooked in my file for almost a year basically - hence the rushed diagnosis I think!! I don't know why I didn't get a Lupus diagnosis because I have a lot of the symptoms, including the crucial antidsDNA marker. I don't know anything about the pattern yet as I saw the Rheumy only once. I got sent away to be seen in the Autumn for crying out loud (I hurt all over) but of course I was not happy so I get to see the Rheumy again - and I am not fully diagnosed rheumatologically as yet as I have other issues.

And I have had major GI issues for the past two years, some symptoms before that but came on full force two years ago. They did not take me seriously for these two years though I spent a year basically lying on the sofa because my anorectal area hurt so much and I could not even sit with it for a whole year. What changed after that? Massive amounts of natural anti-inflammatory supplements and some antibiotics helped so much - though I still flare and have sitting pain with it because my body is fighting back against these. And this was me taking the bull by the horns because no Dr would help me basically. I clearly had infection and INFLAMMATION but they still don't believe me - even though I have got diagnosed with a chronic inflammatory disease now. However, because I have now got the UCTD diagnosis (auto-immunity) I am hoping they will take my GI symptoms seriously this time - got a new GI doc. Like you, Ihurt, I have had to be my own advocate. Yes it is exhausting and it feels like we are fighting a battle all alone. It's so lonely being like this

I believe my UCTD is Lupus and I am going to push for a diagnosis based on some other symptoms I have got going on with the antidsDNA being high too. I don't have a malar rash but I have long had severe rash reactions to insect bites. I have extended family members who have had the rash but got no other symptoms of Lupus. Auto-immunity is in my family on both sides, some diagnosed as such, some unbelievably not diagnosed as such (though some of it is back in time too) !!

You don't need the high ANA to have Lupus, but I can see how it hinders diagnosis if it is non-existent or just low (in what is considered the normal range). For those of us in the UK, London Drs may be better here - they are the experts. It's just so far to go for many of us and it might take a long time to get a referral owing to demand. I have had what I believe are Lupus headaches for over a decade, and noted severe reactions to insect bites as long as 13 years ago on an overseas trip. also think a symptom I had in pregnancy 20 years ago was quite likely Lupus-related. I doubt my Rheumy will accept I could have had Lupus for as long as this (as yet to be formally diagnosed anyway), but my symptoms would suggest otherwise.

I have many GI issues - some might be Lupus-related I am thinking. But some are not I think - possibly Crohns or Celiac Disease (from my symptoms). I am yet to have a scope beyond the sigmoidoscopy I had which was "normal" but then NO biopsies were taken so they can't rule out what might have been happening at microscopic level or below the mucosa.

Auto-immune diseases tend to cluster. And I am borderline hypothyroid too - been this way for a long time now but has slightly progressed in my last test. Hashimo's is in my extended family.

As some of you have pointed out, there needs to be more communication between Drs. So I am going to ask my GI doc to open some communication with my Rheumy. If my Rheumy is not interested (has been disappointing until now) I will find another one as I too am fed up with bad doctors.

We need to follow up on all our tests is what I have since learned - because Drs make crucial mistakes - my last GI doc said all tests were normal - HELLO!! - there was something amiss with ALL my tests at the time this was said!! I actually had to tell the doc what was written in the radiology reports because they clearly had not read them!! We clearly need to obtain copies of scans and reports. I have not yet done that with 3 more recent xrays. I am worried now about being complacent considering past experience with Drs not reading reports!!

We need to remind them to take biopsies, etc - they don't all bother to do it. Some of them may get annoyed - but when we have had bad experiences with sloppy Drs with a bad attitudes, what should we do? My colorectal surgeon who didn't arrange biopsies was a locum so I think he could not care less - a rolling stone - gathering no moss (reputation) and all that!! He hadn't read the radiology reports either. And neither did his successor (he moved on being a locum). I think I was sent to locum in the first place because he was available at short notice - I can see why - rude beyond belief with a really bad attitude.

Stay strong everyone, and be your own advocate rather than let sloppy disinterested overpaid under-reviewed/under-supervised consultants prolong your suffering.


juljul xx
05-28-2013, 06:18 AM   #11
vanilla_chai
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Hey, thanks for sharing, I did see a rheumy last fall and she said the compliments (c3 c4) were borderline and nothing else indicated inflammation. I also dug up an old lab from 6 months prior to the positive ana and it had been negative. I have no idea what that means. The Rheumy basically said to come back to see her when my joint pain can't be handled by tylenol.
05-29-2013, 12:16 PM   #12
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Don't know if this was already mentioned, but drug-induced lupus could be a possibility. It can happen from Remicade and other TNF-Blockers (I have it from Humira). I don't know how high the ANA has to be for a diagnoses, though. Drug-Induced Lupus can cause rashes and joint pain. You really should mention this to your GI because you could be having a reaction to Remicade. I hope you get this all figured out and everything clears up soon.
05-29-2013, 01:50 PM   #13
Ihurt
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Actually for drug induced lupus they would not go by just an elevated ANA. They take a panel of blood work and you have to be positive on like 7 out of the 11 markers for lupus. I have had a positive ANA that comes and goes as well on and off. Lately it has been normal in the last few years. What pattern was yours in?? Was It a nucleolar pattern? They can tell what it might be by the pattern sometimes. They do not know much about all this. Likely they will tell you what they told me. They diagnosed me with an undifferentiated connective tissue disease. That means they don't know what is wrong with you and since some of your markers are high, but not enough to diagnose you with anything, they just tell you it's an undifferentiated disease. I would not worry to much about it.
05-29-2013, 04:44 PM   #14
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I was taken off humira because it changed my ana and caused joint pain.
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05-29-2013, 09:01 PM   #15
vanilla_chai
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Hey, thanks all

The first thing my GI asked was does it seem to get better or worse with Remicade. It definitely gets better. They rash typically shows around week 6. I'm at week 5 now and I woke up with noticeable stiffness. I've noticed the dots (how the rash starts when its mild) since I first had crohn's symptoms and way before a dx (or remicade), so the 2 combined the GI thinks the remicade is probably helping rather than causing

the pattern is homogenous and it was actually "640 or greater" now that I've looked at the lab results again. Apparently they stopped titrating at 640... The rheumatologist I saw said she doesn't ever bother to retest once its come back positive so no idea if it would flip flop or not.

As far as timing with remicade, the negative was 1.5 weeks after remicade and the positive was 8 weeks after remicade

what the GI said after my last colonoscopy (which showed NO disease!) was that it could be extraintestinal manifistations or it could be some other autoimmune disease but there was a chance they wouldn't bother with trying to figure out which since the treatment was pretty much the same. I'm sure the unstated part of that is, unless it gets worse. I'm actually ok with that right now, I'm a bit tired of running around looking for answers (and having surgeries and trying new drugs, etc...) and would be happy if things stay mild and undefined
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