High Positive ANA (2 forms), high C4, negative ENA. Where do I go from here?

[Maryann909]

I have a long history of psoriasis, and my dermatologist brought up the possibility of treating joint pain with Enbrel.  So my primary physician referred me to rheumatology.  As a result I have these lab tests.  ANA >1:640 speckled and >1:640 homogenous.  The rheumatologist ordered an ENA which was negative, and C3 C4.  The C3 was the high border of normal, and C4 was 4 times higher than normal.  Xrays of my hands showed very minor changes, and the lumbar spine showed degenerative changes but apparently not indicative of psoriatic arthritis.
I am having serious symptoms, upper back pain, bilateral hand pain that progresses to numbness, overwhelming fatigue, occasional blurred vision, muscle spasms.  I have even checked my blood glucose levels (my husband has a meter) just to be sure that I am not diabetic, but these levels are always normal.  
I am 48, and feel 100.  The rheumatologist essentially said my tests were a "false positive" for lupus, and so I am left hanging.  I will see my primary physician next month, but wonder if I should ask for a neuro referral?  
Any idea of what I have?  I am thinking maybe Sjogren's (I do have dry eyes noted by an ophthalmologist, and can't go to bed without a drink next to me).  Or some kind of neuro autoimmune disorder, or ????
Any insight would be appreciated.

[stac604]

Hi my name is Stacey.

I have several health issues: gastroparesis, hashimotos, spastic dysphonia.

I run low grade fevers just had test done. Complement C-4 high
Thyriod peroxidase top ab high 2396
Antithyrolobulin ab high 286
Antinuclear antibodies IFA speckled pattern borderline 1:80
White count 11.9
Tsh rfx3.30 I have awful pain from elbow to hands and knees to feet.

I have to go to doctor Friday is their any questions that you think I should ask? My elbows and knee sometimes swell my for arms have looked like Popeye arms. Thank you..

[MLbear]

After 40 odd years of searching for so idea of what is going on, I was pleased to at least read this post.  Since my late teens I have had joint pain, which at times has progressed to my being unable to do much, had incredible tiredness etc.  I have had all the test that have been mentioned with only now the C4 serum done which was a bit high.  I have had bone density, taken prednisone etc nothing has shown anything.  Over the years, the only thing that has even helped is taking more Calcium.  When I started with my present Rheumatologist in the 90s he was horrified that I was taking ~2600mg/day.  Now I am up to 4000/day but it is the only thing that has helped with the pain.  There were times that the pain was enough to keep me from sleeping.  I had found about every two years the pain would start to come back.  It was in basically all my joints. (my rheumatologist said that I have no inflammation even at the times the pain was bad).  When I would remember, and up the amount of calciom, the pain would subside.  I would be fine for another fairly long stretch.  I had found that none of the drugs, that I had been prescribed previous to my discovery of the calcium helping,  had helped and they generally caused other problems i.e. headaches, tiredness, brain fog etc.  I would be interested if anyone else has ever tried this for help with this problem.

[dominicascot]

Karajo is on the ball with her post! I am also on Plaquenil and steroids and they really help. However, I would be careful with the steroids because certain types like Prednisone can have lasting, and sometimes permanent, negative impacts on your body. My prescription insert for Plaquenil says it is an anti-malarial given to certain patients with Lupus, RA, and Lyme. I have seen on certain Rx boards that there is some concern about it affecting people's eyes, but I haven't had any negative side-effects yet and I've been on it since the beginning of March.

DS  :-)

[karajo]

Hi, I thought I would maybe put my 2 cents in.

I was a little confused about the elevated comp 4.  I did some research, but think personal experience is even better. (thanks to dominicascot)  What I found was this: Increased and decreased complement levels will not tell your doctor what is wrong, but they will give him an indication that the immune system is involved with your condition. Complement levels can be increased with inflammation, rising before other markers such as the erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP).

I too think it's sad that you were blown off by the rhematologist.  The least he/she could do was follow your labs for a while.  I saw a rhemy in Little Rock, Arkansas that pretty much blew me off too.  Said I could take a tick-tack and get better.  I didn't know what to say since I had 5 of the 11 criteria for a lupus dx and an ANA of 2,560 w/ swollen joints and raynauds.  I was amazed at the thought I could take a tick-tack and get better.  I thought about sending him a box to put in his med. samples since he had such confidence in them.  But you know what, I found a doctor who decided I had "mild" lupus and put me on plaquinel.  What a difference this has made.  I guess it is mild because all my other labs are normal and I don't have organ involvement.  I know the symptoms I was having was not "mild".  I was bed ridden.  

I would recommend that you go back to your family doctor and let him monitor your symptoms and maybe even try some prednizone or plaquinel. (It takes months w/ plaquinel to see results.)  But at least try a steroid shot to see if you respond positively.  If you have fibromyalgia, you would not respond to the steroid, but you would if you had an autoimmune disorder.

By the way, I'm 47.  
Was 46 when I was dx. w/ lupus and fibromyalgia.

Praying for you, God bless

[dominicascot]

Hi again,

I thought it might help you to include this helpful link to a study concluding that C3 and C4 levels are elevated in patients with acute Lyme disease (see below). If you want additional info about Lyme check out ILADS at www.ilads.org.


http://docs.google.com/gview?a=v&q=cache:lm4cj1hlqjkJ:www.biotoxin.info/docs/C3a_C4a_Acute_Lyme_Glovsky_2006.pdf+lyme+disease+c4+complement&hl=en&gl=us

Wish you well,

DS

[dominicascot]

Hi Maryann,

Your symptoms sound suspiciously similar to some of my own when I first got sick. I had severe joint pain and weakness in my hands, pain in my back, eye pain, and major mental fog. My mother has psoriatic arthritis so I saw a rheumatologist and had two MRIs to rule that out. The doctor found thyroid antibodies in my blood tests, but it took visits to  a number of other "specialists" to determine what else was wrong. I turns out that I have Hashimoto's (an autoimmune thyroid disease), non-Addisonian adrenal insufficiency and supposedly, Lyme disease-- although the last two diagnoses has been very, very controversial, with some doctors completely disagreeing about their presence and others simply stating that their "practices don't support medically unconventional approaches to these illnesses." My initial blood tests for C3 complement were lower than normal and my C4 results were just over 29,000, ten times the upper limit. That was a year ago.

So I'm being treated for all three now, but notice that the thyroid medication has made the most difference with my hands and back symptoms. I also had an eye doctor check my eyes for Sjogren's because I had dry, painful, gritty, burning/itching, often swollen-feeling eyes. Sometimes it felt like my lower eyelids were cutting into my eyeballs, others I had blurry vision, and every once in awhile my eyes would flood with tears/moisture for no reason. Anyway, the doc said nothing is wrong with my eyes physiologically and gave me eye drops for the "discomfort". But now that I'm taking thyroid meds they are much, much better.

My last complement lab tests were in May, and though I'm feeling better than I was, the results are worse. My C3 levels have dropped even more and my C4 level is now just over 81,000. No kidding. The Lyme doctors tell me that during treatment it is "normal" for lab results to get worse before getting, but I don't know who to believe anymore.

Anyway, sorry this was a bit depressing, but I thought sharing my story might help you to recognize or eliminate the diseases that I have. I find it especially interesting that the thyroid and adrenal treatments have made such a major impact on my ability to function, especially with regard to my body pain.

Hang in there and don't believe anyone who tells you that thyroid problems don't cause arthralgia.

Take care,

DS

[ohanamama]

Hi: Your primary care can continue on with some of the blood tests if the Rheumy has kind of blown you off for now.  There are so many more than can be done if you suspect auto-immune conditions from the ANA.  Remember, a positive ANA can often mean nothing at all, but with all your other symptoms, you probably do have something going on.  Sjogrens can be tested for with the SSA and SSB.  I'm sure scleroderma has a test for it also.  MS is usually tested by an MRI.  I sincerely doubt it's lupus because you don't mention any real joint involvement.  Usually you have hands, elbows and/or knees that are hot, red and swollen if it's lupus.  Do you know much about Fibromyalgia?  Your symptoms sound alot like Fibro to me.  Only a skilled Rheumatolagist can properly diagnose the 11 of 18 tender points, and I wouldn't go back to the individual you saw the first time as "he" may not be a believer in the condition.  Best of luck to you!  Just so you know, it usually takes a good 18 months to get the proper diagnosis and treatment, so don't give up but don't get too frustrated either.

[smlbehppy7777]

Hi,
I would see an eye doctor to see if there is any inflammation in your eyes. You should have your b12 levels checked too. Just some suggestions.

[floridagirl11]

Get a new Rheumatologist!  I have heard countless stories about people having to change doctors up to 10 times before they found someone who knew what they were doing! My own doctor wanted to take a "wait and see" approach with me but the more I have researched my potential illnesses and talked to others who have what I probably have, the more I have been told that this approach is a BAD idea! Early detection and treatment is KEY in a lot of these autoimmune disorders, especially because there are no "cures." Please be proactive with your health. It should be no skin off your doctors back to give you another referral, and this time, do your homework and go see someone who knows what they're doing! Calling a local or state chapter for Lupus to find out about different doctors in your area would be a good place to start. My thoughts and prayers are with you.

Hope

[Maryann909]

Thank you so much for your support and kind words.  
The rheumatologist already did an ENA which came back 7, so it is considered negative.  Evidently, since I don't have lupus in his opinion, he doesn't really care what I have and I can't even get another appointment with him unless my primary refers me back again.  But I don't see the point in seeing him again if he is only going to dismiss my labs and symptoms.  
The high C4 indicating inflammation supports the fact that I am having joint pain, but the rheumatologist says it is not RA, PsA, or Lupus.  I do have significant degenerative changes, so I suppose the lab could reflect osteoarthritis, although how that accounts for my hands, I don't know.  
I am not having color changes with my hands, and I don't think Scleroderma quite fits my picture.  I have considered Sjogren's.  And I wonder if MS needs to be ruled out, but I am not sure how the ANA fits into that.  
Anyway, I will try Justanswer.com.  Thanks for the information.

[floridagirl11]

Here is some info on your two pattern results:

High Titer (greater than 1:80) Homogeneous
High titered (1:160 or greater) homogeneous pattern is suggestive of idiopathic or drug induced SLE. Lower levels are seen in other connective tissue diseases. Specific tests to quantitate antibodies to dsDNA and DNP can be ordered if clinically warranted.


High Titer (greater than 1:80) Speckled Pattern
High titered (> 1:80) speckled pattern suggests antibodies to extractable nuclear antigens (ENA). ENA testing in this laboratory includes Sm (associated with SLE), RNP (Mixed Connective Tissue Disease), SSA (Sjogren's Syndrome-SICCA complex and SLE) and Scl-70 (scleroderma). Specific assays for Sm, RNP, SSA, SSB or Scl-70 can be ordered.


Have your Rheumatologist run the tests they suggest. It sounds like you may have the early onset of Scleroderma. Are your hands changing color at all when they get numb?

Another thing I would suggest is to go to Justanswer.com and throw a few bucks to a doctor to have them answer your question about what you have. I have had symptoms for 5-6 years and my regular doctor kept running tests on me that turned up negative. I went to justanswer and asked my question and they told me to go have my ANA checked. Here I am a month later and now I know I either have Scleroderma or Lupus.

Stay positive! God bless!