It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Lupus Message Board
Post New Thread   Closed Thread
LinkBack Thread Tools
Old 12-23-2007, 02:47 AM   #1
Member
(female)
 
Join Date: Jun 2007
Location: San Jose, California, USA
Posts: 66
thinkfast HB User
Unhappy Very high ANA titer results and nucleolar pattern: lupus or scleroderma?

Hi, This is my first post, so I have a lot of details here. Sorry for the novel...
I have been undergoing extensive testing for the past 8 months. Had walking pneumonia in February, 2007. Lung nodules (calcified and noncalcified) as well as bilateral hilar adenopathy and axillary adenopathy were discovered on chest xray. PET scan showed SUV in the hilar and axillary nodes, but not in the lung nodules. Seven months later, had a second PET scan, which showed no change in the nodules or adenopathy. Had some axillary lymph nodes biopsied. Results were benign reactive lymph node with sinus histiocytosis and lymphofollicular hyperplasia. Sugeon recommended lung surgery to get answers.

PCP wanted to do more bloodwork first. Results of bloodwork are that several tests for Epstein Barr Virus showed up positive. Rheumatoid Factor showed up positive at "14H". Most concerning is that my ANA (choice) ANA IFA was positive. And Anti-Nuclear AB (IFA) titer was "1:1280 or greater" (it doesn't list the specific result), which I understand is very high. The pattern was nucleolar, which I believe is more likely to be scleroderma.

I have mild dry eyes, and my ankles click when I walk, but they do not hurt. That clicking started several months ago. I have no skin disorders/rashes. I exercise most days and have a lot of energy. The only new symptom I have is mild, but constant heartburn. Any ideas if this could be sjogrens syndrome, definitely scleroderma? Definitely not lupus? I have a second cousin with lupus and brothers who are diabetics (type 1). My mother died of acute myeloid leukema at 69 years of age, so a lot of autoimmune disorders do run in my family. I can't get in to see my PCP to go over these results until early January. So I'm very worried and overwhelmed. Any thoughts would be greatly appreciated.

 
Sponsors Lightbulb
   
Old 12-24-2007, 07:07 AM   #2
Facilitator
(female)
 
Join Date: Feb 2004
Posts: 4,822
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Very high ANA titer results and nucleolar pattern: lupus or scleroderma?

Thinkfast, Hello! I'm sorry you're having these worries. Obviously, I'm just a patient, so here are some questions I'd probably ask if I were in your shoes.

Your lung findings are way too complex for me to have even a sense of what they mean. But you could ask which findings are consistent with pneumonia & which aren't.

As for ANA, one reads in articles/books that it can elevate due to a passing virus. Would pneumonia qualify, or some particular type of pneumonia? And with that ANA pattern?

And how do doctors tell when pneumonia is "over"? Meaning, if active pneumonia can cause certain findings, at what point might those findings start to point to something other than pneumonia?

On your positive RF: I think it can elevate in RA & lupus, and maybe some others; but I don't know if a single positive result necessarily means big trouble lies ahead. Can a single finding be a blip on the radar? And, can some people test positive repeatedly but never develop clinical symptoms? Will your dr. run repeat bloodwork, or other diagnostic tests?

Other tests: Did you see a long list of specific autoantibody/complement tests, meaning the ones described in the "sticky post" at the top of the thread list (anti-ds-DNA, anti-Sm, anti-Ro, anti-La, etc.)? Also other tests run where scleroderma is possible? But maybe your drs. held off ordering all these, pending further proof they are actually needed?

On Sjogren's: anti-Ro is the most common antibody found, but I think it's found in only 50% or so of patients; and it's also seen in lupus. I think lip biopsy is the most definitive test for Sjogren's.

I hope you work thru your concerns without anything bigger rearing up. With the known autoimmunes in your family, I can see why you want clarity ASAP. I hope others chip in soon. Bye for now, with my best wishes! Vee

 
Old 12-24-2007, 06:35 PM   #3
Facilitator
(female)
 
Join Date: Feb 2004
Posts: 4,822
VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Very high ANA titer results and nucleolar pattern: lupus or scleroderma?

Thinkfast, While doing last-minute holiday items, I recalled something I forgot to ask earlier. Were you on antibiotics, etc. for the pneumonia? Have you read about, or heard of, DILE = drug-induced lupus? There are various drugs that are associated with this form of lupus.

For what it's worth, Vee

 
Old 12-26-2007, 12:14 AM   #4
Member
(female)
 
Join Date: Jun 2007
Location: San Jose, California, USA
Posts: 66
thinkfast HB User
Re: Very high ANA titer results and nucleolar pattern: lupus or scleroderma?

Hello, Vee--
Thank you very much for taking time to read about my history and offer your assistance. I hope you finished your holiday shopping! I have only had the initial bloodwork done for the autoantibodies. When I see my GP next week, I assume the next step will be a rheumatologist appt. and more bloodwork. I'm curious to know if having the extremely high ANA titer means I will definitely develop symptoms of/a disease or if I already have hidden tissue destruction going on of which I am not aware. Or if the high titer could be due to the EBV positive results I also had. I have read about autoimmune hepatitis and wonder if I may have that due to the acid reflux I've had for several days (since finishing a round of metronidazole for a sinus infection.)

As far as the pneumonia, apparently, the hilar lymph nodes being inflamed now would not still be due to the pneumonia effects. And none of the docs can explain the lung nodules without a biopsy, which would require a major lung surgery. But they are not due to the pneumonia. The lung nodules haven't grown in 7 months, so we're taking a wait and see with that. I have heard that with RA, one can develop lung nodules. But I would doubt that's what I have since I don't have any arthritis symptoms. I was put on an antibiotic for the pneumonia, but I don't believe it was one that causes the high ANA titer. Plus, that was 10 months ago. Everything I have read about scleroderma is so unsettling. Thanks again for your insight...

 
Old 12-26-2007, 06:44 AM   #5
Veteran
(female)
 
Join Date: Apr 2005
Location: TX
Posts: 331
ErinS64 HB User
Re: Very high ANA titer results and nucleolar pattern: lupus or scleroderma?

Thinkfast, Scleroderma is scary. I know from personal experience. I have been going through the diagnosis of that as well. I was diagnosed with SLE a couple of years ago and now have developed scl like symptoms. Make them confirm it completely. If you need the lung biopsy to confirm it, you need to do that so they know for sure what they are treating and will treat it correctly. Otherwise, take it from me you end up in this crazy "lets try" mode with rollercoaster results.

I have posted alot of what is going on with me under another thread. I was mostly rambling I will admit! It was looong....lol... I was really a mess last night. I am just so frustrated, scared and well ******!!! Hopefully, my pet will be ok and my biopsy will give them the answers they need.

I completely understand the feeling of fearing the answer, and not knowing driving you nuts and making you fear even the worst. I have cried more times than I can count the last few weeks thinking, they are just going to let me die while they try this and that and see me again in a week or 10 days. That is probably my own hysteria and fear talking but it is really scary when you KNOW that something is really wrong and you are not getting any better and the TEAM of doctors you are paying every extra dime you make to help you are all just scratching their heads. I am sure my next team member will be equipped with a straight jacket!

Before I ramble more, my point...sorry.... Make sure they do all of the blood work and biopsies...make them be throrough and nail it down so you get the CORRECT treatment. The earlier the better. It is much better than letting them put an overlap label or MCTD on you or dose you with prednisone for so long they cant tell what is going on because prednisone does such weird things to your blood work and body too that they are unable to tell what is you and what is being caused by the steroids.

I was also terrified of the scleroderma. I have since started to doubt that I have it at all. My hands are only slightly swollen while the rest of me is thickening up with masses all over. Now they are testing for lymphoma...today in fact. I am just hoping this is God's way of helping me deal with whatever I will have to later, be it scl or lupus and by scaring me and saying to me "Hey, it could be worse!"

Erin
Dallas TX

 
Old 12-26-2007, 08:23 PM   #6
Member
(female)
 
Join Date: Jun 2007
Location: San Jose, California, USA
Posts: 66
thinkfast HB User
Re: Very high ANA titer results and nucleolar pattern: lupus or scleroderma?

Hi, Erin--
Thanks very much for your reply and thoughts. I will definitely take your recommendation to try to ensure the docs come to a solid diagnosis rather than a possible one before putting me on medication. I have also heard a lot of bad things about Prednisone; but I understand that is often the course of treatment for many autoimmune diseases.

This holiday season has been difficult so far due to my picking up my labs last week, but not being able to get in to see a doctor for another week. So of course, I'm fearing the worst. I'm stunned by all this because I truly only have one bothersome symptom, which could be entirely unrelated to any of these diseases. If I didn't know my autoantibody titers were so high, I'd be feeling great and not have a care in the world. I went for a 4-mile hike yesterday and had no clue that I may be sick.

I hope you get some resolution on your situation soon. Sounds like you have been going through a lot the past couple years. For me, going through the past ten months of various potential diagnoses including metastatic lung cancer, lymphoma, breast cancer, sarcoidosis, and now lupus and scleroderma has been stressful to say the least.

If you don't mind my asking, why do they now think you have lymphoma? Are your lymph glands swollen? I understand there is a condition of persistent idiopathic lymphadenopathy, which I may have and basically means nothing because the docs can't figure out what is causing the swollen nodes.

Anyway, I wish you well with your lastest tests. I did a lot of research about lymphoma since I had a biopsy surgery recently to rule that out. I read that, depending on the type of lymphoma, it is very "treatable/curable". So I guess in some respect, that's good news.

Take Care--

 
Old 12-27-2007, 03:25 AM   #7
Veteran
(female)
 
Join Date: Apr 2005
Location: TX
Posts: 331
ErinS64 HB User
Re: Very high ANA titer results and nucleolar pattern: lupus or scleroderma?

The reason for the suspician is that I am high risk for it, due to the Ro SSA antibodi and the methotrexate I took for over a year. That and the fact that I have had 2 axilliary nodes that have steadily gotten larger over the last 8 months and I have new nodes doing the same. I have night sweats really bad. I mean I have to get up and change atleast once a night. I also have other symptoms which make them think there are more swollen that are not palpable too. Hence the pet scan. I have alot of jaw hardware so they have never been able to get a good look at the one under my jaw that has been swollen for a long time. We just always assumed it was the pitotid gland which fit with everything else. Meanwhile, they just kept growing and now there are more..not so big, just more that you can feel. Including my neck, jaw, collarbone (that one sticks out like a golfball but more of a swelling than a knot) I have them in my groin and even behind my knees. I have a couple on my abdomen too. I also have a mass that is fixed above my left breast. Hard and fixed too. Soooo lots of places. Also, if it is Lymphoma it is very aggressive and those seem to be the easiest to treat so that is comforting too. I am not afraid of the treatment, I know that I will have to go through a little hell...really that is ok,,,IF I know that down the road at some point I will feel better than I do right now!

My Rheumi is the one that referred me and He said the reason he was suspicious is that they raised my Cellcelpt and my prednisone pulsed it several times to 70mg a day to see if I would improve from that and they have given me 4 different broad antibiotics orally and 2 different ones by shot...one of those bad boys was a doozy!! Meanwhile my white count has stayed steadily elevated but only a bit...nothing too bad and nothing changes, it just keeps getting a little worse. He said that if it was an infection, when am off of them and on the immune suppressants, it should rare up and me run a higher fever and it escalate, but that didnt happen...and when I took the antibiotics the same...just steadily a little worse. I am still taking the antibiotics on the off chance that they may kick in at some point...not likely but hey!!

The oncologist did also say, there was a slight risk that this is another sarcoma that has metastisized to my nodes as well...As I said, I have these masses. My left leg has one above my knee in my muscle. It is very fixed and about the size of my hand but it comes around to the back of my thigh too. oh...and did I mention that I have had 4 rib fractures in the past 18 months. 2 I know from coughing and the other two..I have no idea how I did it. (that also could be from the prednisone too though)

I do run a fever but it is a very low grade one and have for a long time. I just chopped that up to the SLE.

Now you understand why I say, either I will light that puppy up like a christmas tree or I will know it isnt cancer. Then we can move on to the next possibility. I swear I wish they would just admit me and run the gammot of test and nail it down!!! It has been going on for so long now. I have had lupus for years now...I know when I am flaring...this just doesnt feel like a lupus flare. It is something else and I have been telling them that. I have something in my chest, I can FEEL it... Everyday. Some days it is just there and others it really really hurts. I have taken prilosec for months which helps with the gerd but not the pain from it.

The fear sucks, there is no doubt about it. But couple that with the fact that I am getting sicker and sicker and have gotten no relief at all from what they have tried is what makes me more panic ridden. WHATEVER it is, is going along completely unchecked and I need them to figure out what it is and get it back under control. Or at the very least slow the progress down a bit.

I understand fearing the worst... but if you feel ok and are up to a 4 mile hike, I wouldn't panic too bad. I havent been up to a 200 ft hike in years!! lol.... I know how the doctor visits and the possibles can be frustrating and scary and a real rollercoaster ride. You get to where you dont even want to tell anyone what they say because it comes out sounding like the disease of the week... lol... atleast that has how it has felt for me.

Just hang on to the fact that you feel pretty well, which means that you have time to find out the truth and without them hitting you with all of the powerful meds. If you are sick, really, really enjoy this time now because that will change eventually.

Good luck with your visit. I understand the frustration. I go to the oncologist Friday afternoon for my pet scan results...



Erin
Dallas TX

 
Old 12-28-2007, 10:25 AM   #8
Member
(female)
 
Join Date: Jun 2007
Location: San Jose, California, USA
Posts: 66
thinkfast HB User
Re: Very high ANA titer results and nucleolar pattern: lupus or scleroderma?

Hi, Erin--
Thanks for all the details about what you've been going through. I can see why you are frustrated and at your wit's end! I know what it's like to wait for PET scan results. I once had to wait 3 weeks because my doc went out of town. I didn't light up like a Christmas tree, but did light up in several areas in my chest and axillary lymph nodes. My surgeon says that even though my armpit nodes were benign and reactive, she doesn't know what they are reacting to and the only way to find out is to operate on my lungs and take out samples of the hilar nodes. That major surgery, a thoracoscopy, is something I've been trying to avoid due to the long recuperation period. She thinks I may still have lymphoma (indolent form) because of the hilar nodes still being swollen.

I hope you get some resolution with your results and that your docs can find good meds to help alleviate more of your symptoms.

Yes, I feel great now, but worry that my life will only get "worse" in the future once a diagnosis is made. I guess most people go through that fear. I've always been very healthy and athletic and to hear that I may have problems that change my entire life, even shorten it, is obviously depressing and scary.

I'll think positive thoughts for you and do wish you well with whatever comes your way.

 
Old 01-05-2008, 11:35 PM   #9
Member
(female)
 
Join Date: Jun 2007
Location: San Jose, California, USA
Posts: 66
thinkfast HB User
Re: Very high ANA titer results and nucleolar pattern: lupus or scleroderma?

Hi, Erin--
I saw on one of the other boards that you learned you don't have lymphoma. That's great news. I'm sure you are very relieved. I finally was able to schedule an appt. with a rheumatologist and endocrinologist. My GP didn't have much to tell me this week, but she did mention possible thyroid issues. Anyway, best of luck with your situation.
Think Fast

 
Old 01-06-2008, 10:26 AM   #10
Veteran
(female)
 
Join Date: Apr 2005
Location: TX
Posts: 331
ErinS64 HB User
Re: Very high ANA titer results and nucleolar pattern: lupus or scleroderma?

Thank you Think Fast. I hope you get answers too. I understand your fear, believe me. Try to keep thinking positive and keep active. Try to keep thinking how good you feel. That is a very good thing! That is actually the hardest part, is when you really feel bad and not know why. You are blessed with not having atleast that part to deal with. The fear is bad enough! Yes, I got my results on the 28th and was very relieved. Now they just have to figure out what is making me so sick or change my meds and see if it helps. They have been trying to get me to take the Cytoxan but I have been resistant due to the harsh side effects. But the Cellcept does not seem to be helping. My joints are worse than ever and well everything is a mess...too much to go into. I go to the rheumi on the 8th so we will see what the next step will be. I am sure now it is all part of the SLE and scleroderma. The overlap thing sucks for sure, but I am just thankful it isnt cancer too. I think God was trying to help me understand that things can always be worse.

Erin
Dallas TX

 
Old 01-06-2008, 06:57 PM   #11
Member
(female)
 
Join Date: Jun 2007
Location: San Jose, California, USA
Posts: 66
thinkfast HB User
Re: Very high ANA titer results and nucleolar pattern: lupus or scleroderma?

[QUOTE=EStevens64;3377173]Thank you Think Fast. I hope you get answers too. I understand your fear, believe me. Try to keep thinking positive and keep active. Try to keep thinking how good you feel. That is a very good thing! That is actually the hardest part, is when you really feel bad and not know why. You are blessed with not having atleast that part to deal with. The fear is bad enough! Yes, I got my results on the 28th and was very relieved. Now they just have to figure out what is making me so sick or change my meds and see if it helps. They have been trying to get me to take the Cytoxan but I have been resistant due to the harsh side effects. But the Cellcept does not seem to be helping. My joints are worse than ever and well everything is a mess...too much to go into. I go to the rheumi on the 8th so we will see what the next step will be. I am sure now it is all part of the SLE and scleroderma. The overlap thing sucks for sure, but I am just thankful it isnt cancer too. I think God was trying to help me understand that things can always be worse.

Erin, Thanks for the words of encouragement! I appreciate that. I feel like a wimp because I'm worried about symptoms I may have one day, while today I feel great. My family can't understand why this mystery diagnosis stuff has been bothering me so much for close to a year now. Each week, it's like what you said before, it's disease of the week with me. But so far, no concrete diagnosis. All the while, I've felt physically great, but mentally terrible. My company laid off our division a few months ago, so I was worried about getting health insurance again, etc. and paying for all my tests. Fortunately, I landed another job. But we're in a slow industry, so I may have to start looking for work again.

I hope they get your meds figured out. Two of my brothers are pharmacists and they tell me that medications certainly react differently with each person. But they can eventually help most people once the correct dosage and combination is found. Have you tried the nontraditional approach? Herbs, supplements?

Have a great week, and hope you get some good info. on the 8th--
Thinkfast

 
Closed Thread

Similar Threads
Thread Thread Starter Board Replies Last Post
UPDATE to "New and Very Scared": What the Dr Said Conniel7777 Lupus 4 06-08-2009 12:33 PM
Nucleolar pattern Postie Lupus 15 04-28-2009 01:07 PM
Nucleolar Pattern Postie Lupus 0 11-25-2008 09:12 AM
ANA titer of a 1:1280 and I am scared Nicksmom1990 Lupus 5 04-05-2008 08:24 PM
HELP...antibodies super high krazykai Lupus 13 09-14-2007 07:16 AM




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Join Our Newsletter

Stay healthy through tips curated by our health experts.

Whoops,

There was a problem adding your email Try again

Thank You

Your email has been added








TOP THANKED CONTRIBUTORS



VeeJ (170), ladybud (41), AngelicBrat (16), luca689 (7), neveragain444 (6), ksp (6), luvinmusiq (5), brooklyngirl (4), Daisygrace (4), AgedFlowerChild (3)

Site Wide Totals

teteri66 (1136), MSJayhawk (941), Apollo123 (856), janewhite1 (823), Titchou (770), Gabriel (743), ladybud (667), sammy64 (666), midwest1 (655), BlueSkies14 (610)



All times are GMT -7. The time now is 12:47 AM.



Site owned and operated by HealthBoards.com™
Copyright and Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!