I was presented with a "significant positive" on ANA test results (with a 1:160 titer) the day before yesterday. In the same report, my Anti-DNA (ds) titer was listed as 1:80, also designated "positive." All other tests in the lupus panel were negative. The symptom that brought me to the doctor last week was a bright red, angry, itchy, swollen rash on both cheeks (none on the nose) accompanied by bright red, itchy splotches on the front of my neck, between my chin and the top of my breasts.
The cheek rash lasted about a week; the neck rash is still there, bright as ever, but no longer itching.
About six months ago, I was suffering from dysphagia (difficulty swallowing) and heartburn/indigestion/severe pain where esophagus meets stomach. Had the upper scope test done; doctor found a narrowed esophagus (which he stretched), and evidence of acid reflux. I was given Aciphex, which completely eliminated all digestive symptoms.
I have suffered from migraines for nearly 20 years.
I saw a rheumatologist about 10 years ago for muscle/joint pain. He put me on Celebrex, which I have taken (with great success) for a decade.
I also suffer from depression, for which I take Wellbutrin XL, again, with great success.
I am and always have been highly sensitive to the sun--staying out in it causes my skin to itch and redden. The dermatologist who ordered the lupus panel of blood tests took a "hunk" of skin out of my neck yesterday; she will have it biopsied for evidence of cutaneous lupus. I can't say that I feel great, but I haven't really had fever, and don't have flu symptoms or swollen joints. My shoulders, elbows, wrists, hips, knees, and ankles are almost always a bit achy, but never enough to keep me from work. Could it be that my aches have been there so long, I discount them and categorize them as "signs of age?" (I'm a 59-year-old caucasian woman.)
First, can anyone who has had lupus for awhile tell me if my symptoms sound like this could be lupus? Second,
try as I may and try as I might, I can't really find anywhere on the Internet a titer number associated with normal vs. abnormal anti-DNA (ds). Does anyone have any info? Thanks in advance for any info you may be able to share.
By the way, I've always been known for my ironclad immune system. I am NEVER sick! When everyone else at the office has caught every bug that comes along, I'm still rocking along. I can't remember a time in the last decade that I've missed work because I'm ill. The irony now seems to be that my immune system is SOOOO good that it is fighting against itself!
The biopsy ought to be enlightening, I wish you well with that! Lupus is an autoimmune disorder, for many of us leaving us with a higher than normal resistance to illnesses but every case is different. The plaquenil, that is usually rx'd for lupus, is an immunosuppressant, so for those of us that take it, it may make us more susceptable to illnesses. I know my doc's watched me really close the first several years after I was diagnosed with discoid/cutaneous lupus.
Thank you for sharing about your success with celebrex and wellbutrin! I've been struggling with SSRI's for several years and still haven't found on that works for me without lethargy, or incredible anxiety! Also, I've never been rx'd celebrex for my joints; just methocarbamol.
The sun allergy symptoms sounds like it could be discoid lupus, but rely on the immuno fluorescent stain to come back from the doctor! Blessings of Peace to You & Yours ~
First, I need to ask you about the dysphagia. I'm trying to figure out if this is what I'm experiencing. I have the extreme pain below the sternum, but I also have pain there when I swallow sometimes. Kind of like when you take a big gulp of something and it maybe has too much air in it and it hurts going down. I had my esophagus stretched too. So, I guess my question is what does it 'feel' like when you say difficulty in swallowing? I've tried all kinds of meds for the acid reflux with no success.
Anyway, my ANA was 1:640 and my first A-DNA was 1:40 and 8 mth later was 1:160. Here is my understanding about the A-DNA. A negative result would be a normal reading, so anything reported in a titer is positive and of course the higher the ratio, the more elevated it is. I could be wrong, but this is what I've gathered from my rheumy and internet reading, which is sparse.
Here is a link that may help you understand how they come up with the ANA Titer and what is normal. http://www.questdiagnostics.com/kbase/topic/medtest/hw2297/results.htm
My problems began with extreme fatigue, pain (joint and ligaments, muscles and tendons), mental confusion, unable to think of words and finish sentences and finally not being able to go any further than from my bed to my couch for about 6 months of last year. My ANA titer stays at 1:1280 which is very high but my DSDNA has always come back negative and so mas my anti-sm. I do have a positive chromatin neucleosomal antibodies but some doctor say they don't use that test so it can be very confusing. I have been on Cellebrex for many years because of a disc problem in my back and I didn't realize how much it was helping me now until I stopped taking it for two days about two weeks ago. I was starting steroids and thought I would lay off the Cellebrex a while for a break. I was in unbearable pain. I am right now on 10 mg. steroids and cellebrex and will go down to 5mg. steroids in one week and then start plaqunel. Rheumy's don't usually start you out on Plaqunel, they usually try steroids and see what pain stops and what doesn't. That shoudl tell them a lot. Steroids wil not help any pain of Fibromyalgia but cellebrex will. I am only telling you my experince and what I have been told and decifered (sp?) over the last year. I am also on Serzone which is an anti-depressant that has vertually no side effects, at least not for me and it helps with pain as well.
Here are a few things I can tell you from my own experience: Be your own advocate, don't assume doctors know everything and are also right because different doctors of the same speciality will diagnose and treat you differently, go with your gut feeling about a doctor when you pick someone (they work for you and you are hiring them to help you), and NEVER ACCEPT THAT YOU HAVE A DISEASE THAT WILL NOT GO AWAY. ADDITUDE IS EVERYTHING. KNOW YOU CAN BECOMING HEALTHIER AND STRONGER, AND IF YOUR FAMILY IS OUT OF TOWN LIKE MY DAUGHTER IS 2000 MILES AWAY FIND A GOOD GROUP OF FRIENDS OR SUPPORT GROUP LIKE WE HAVE HERE. Like I said, ADDITUDE IS EVERYTHING AND WHAT YOU TELL YOURSELF ON A DAILY BASIS CAN MAKE A WORLD OF DIFFERENCE IN YOUR LIFE. GOD BLESS!
Thanks for your very kind words. I'm sort of in a holding pattern right now. Still waiting for skin biopsy results and the CBC, CHEM Metabolic, and G6PD (what in the heck is that?) bloodtest result. I'm actually itching all over, but mainly on my face, arms, and scalp. No hair loss or sores. Again, don't feel great, but certainly don't feel poorly enough to not work. Can you tell me the major differences in SLE and Discoid Lupus in terms of blood test results, symptoms, prognosis, etc? That is, if the results of the skin biopsy come back positive for Discoid, does that mean I would be out of danger for damage to internal organs and should just avoid the sun to prevent rashes? Somehow, I just know it's not as simple as all that, but any light you may be able to shed on it will be much appreciated. And, because the Celebrex seems to have been working so well for joint pains over the years, couldn't I just continue with that? Or, will they tell me to take Plaquenil (spelling?) instead? Or perhaps in addition to?
Thanks for all the info....very helpful. Your description/explanation of the Anti DNA titer results makes a lot of sense. I'm curious to get the results of the additional tests.
With regard to the dysphagia, you described exactly what I WAS, but no longer am feeling. As I recall, for probably at least six months before I actually went to the doctor, EVERYTHING that went down my throat caused some degree of pain. It was much worse with rice, bread, pasta--the more dense the more pain. I found myself losing weight (which was not at all a bad thing!) drawn toward softer foods, chewing everything much longer, and of course searching on the Internet to find out what was happening. On several websites I read, "One of the first signs of esophogeal cancer is dysphagia." You can imagine how I overreacted. If I had read on further, I would have seen, "Dysphagia may be a symptom of LOTS of things!" Anyway, what really brought me to the doctor during that time was one episode of excruciating pain in my chest that lasted about 10 minutes. I really thought I was having a massive heart attack. After it passed, I decided that it must be digestive. One of the profs in my department bugged me and bugged me until I went to the doctor. My GP sent me to the GastroIntestinal Clinic for an upper endoscopy and a colonoscopy. The upper endoscopy revealed an "irregular Z-line" (which almost everyone has), evidence of stomach cells that had migrated into the esophagus causing the acid reflux, and a narrow esophagus. As I said before, the doctor stretched the esophagus and put me on Aciphex. I have had absolutely no chest pain, no dysphagia, and no feeling of acid reflux since then. Have you tried Aciphex? It's been a real godsend for me.
Thanks for the follow up about the dysphagia. I've had acid reflux for over a decade, but I was always able to control it via diet. Whenever it was a problem (several yrs ago) I tried Prilosec and some other similar drugs and then recently, several proton pump inhibitors like Protonix and a new one called Zegerid.
Before my diagnosis in Nov 07, when 'it all started', I was having a gnawing pain/discomfort below the sternum. It was 24/7 for about a week. I went to my GP and had an EKG which was fine. That's when they tried all the different meds for acid reflux. Nothing helped. Then my throat started to get sore. It was sore for seriously like 45 days straight. I had an upper endoscopy done (the 3rd in my life...prior ones showed gastritis, etc) which revealed NOTHING wrong except inflammation (duh), but I was told they stretched my esophagus. That doctor insisted that the sore throat wasn't from acid reflux....oh how I wish she had been wrong!
The day after my endoscopy, I started having weird joint pain I had never experienced before. It would be in one joint of a finger one day and then the next day somewhere else. At the time I was actually seeing on orthopedic doctor for tendonitis in my elbow. During 2 separate visits I told him about the weird joint pain. The first time he thought it might have been from the IV in my left hand (b/c that's where the joint pain started), but the 2nd time I saw him he immediately sent me to a rheumatologist. (I still need to send that ortho doc a grand thank you letter)
And then the grand journey began. As soon as I went on 60mg of Prednisone (yikes!) the sore throat went away. Oh, I also felt as if my throat was 'strained' and it would travel all the way into the roof of my mouth. It was really weird.
Well, I was on steriods for about 6 mths and weaned just before May. As soon as I was down to 2.5mg, all the joint pain started creeping back, but not as bad. Then, about a month ago, that gnawing discomfort below the sternum came back and my throat has been sore for at least a month now.
I just got back from a week vacation and during my trip, there were at least 3 days were I had that chest discomfort but it was so bad that when I swallowed even a liquid it hurt when it passed the spot. At the same time I was having severe swelling in some finger joints, to the point where I had to tape a couple fingers together to keep from moving them. It's just so weird, as soon as the severe finger swelling stopped, the chest pain/swallowing pain stopped too.
I'm scheduled to see my rheumy on Thurs but I'm calling tomorrow to beg to get in sooner. I am definitely going to ask about the Aciphex. And I imagine we'll be talking about Plaqunil too. I would LOVE to try the Cellcept, but I cant b/c I also have Colitis and my GI doesn't want me taking non-steroidal anti-inflammatories.
Thanks for listening! Let us know right away when you get your labs back!
This is my third response to you today--the first two did not go through for some reason. So...this is the condensed version of two REALLY long epistles....
First, your symptoms sound like you may have a stomach ulcer caused by perhaps years of NSAIDS, and maybe temporarily masked by the Prednisone?? Just a thought...when you used the term "gnawing," it reminded me of how my mom described the feeling she had before it was determined that she had a stomach ulcer. I've not ever had one, so my lame diagnosis may be way off base.
Second, what is your opinion about the value of the C3 and C4 complement levels to contribute to the diagnosis of SLE? I haven't had these done, but it seems that maybe I need to, according to all I read.
Third, everything I read (which I am sure is miniscule compared to your knowledge base) indicates that the high positive Anti-DNA results coupled with the high positive ANA results, the photosensitivity, the malar rash, and the other rash on my neck from which the skin biopsy was taken (no results yet) point to SLE--the systemic kind, not just the skin/discoid kind. If that is the case, should I be worrying about "silent" damage to the kidneys or other organs, even though I have no symptoms? That is, should I be taking something to PREVENT damage to internal organs long before I ever have any symptoms? Again, I don't feel really poorly--maybe a little lazy, but certainly not in great pain or discomfort. Is it possible that I actually have SLE that is doing damage to my body as I write, and I don't even know it because I don't really feel bad? It seems that most folks (who later find out they have SLE) see the GP for the first time because they really feel LOUSY. I saw the dermatologist b/c I thought I was allergic to something that caused the rash on my face. I was taken aback when he suggested Lupus and sent me for the first tests. This all seems so surreal!
The dysphagia reminds me of my aunt, who has scleraderma and not Lupus. I have had Lupus for so long and with such a wide range of varied problems throughout the years...I wouldn't know where to start and as each case is different, I certainly wouldn't want to scare anyone! I have had a similar rash as you on a few occasions. Like you, I absolutely never get cold or flu. Never. I have, however, had cancer and several benign tumors and am known to joke that I never ever get sick. Just Lupus. And Cancer.
All I really know about the C3 and C4 is that they tend to be low in people with Lupus. My C3 was about 5 pts low and my rheumy said that was to be expected. He once told me that doing all these other tests just helps paints a better picture as to what is going on. I have know I idea if the C3/C4 are absolutely necessary or if they point directly to a particular type of Lupus.
As far as the high ANA combined w/ a positive A-DNA pointing to SLE. That's a great question for a rheumy. I really have NO idea. When I was diagnosed, I pretty much felt OK except for all the joint pain and sore throat and weird chest discomfort. I've had several tests to check kidneys, pancreas, etc and they've been fine. So I'm not sure if damage could be taking place w/o feeling lousy.
I guess my advice would be to find yourself a rheumatologist (if you haven't seen one yet). I've had great communication with mine and he's always willing to print off lab results for me whenever I ask. It sure makes things easier.
I totally understand what you mean about it being surreal. One minute you're perfectly fine and the next day, 'surprise'.
I have to start with I agree with Erin that you need to find a good Rheumatologist. Be careful because as most of have learned on our own, with lupus or anything autoimmune doctors just don't know that much yet. Be very careful picking a good Rheumy. In the last year I have gone thru 4. The fourth one I saw was the one that I stuck with because she didn't tell me things were "in my head" or "it comes from depression" etc. AND and this is big. She didn't just give it a name, like say it's lupus and send me home with steroids or plaqunel saying I will have to live with it. She instead sat down at a desk with me and said, "Let's figure out what's going on with you". It was kind of like She had me at HELLO you know? So she is sure I have a "connective tissue disease" which basically means I have an ANA of 1:1280 and I have all the symptoms of Lupus but I don't have a positive SDDNA or double stranded DNA. Now this is the part where I don't want to scare you but you do need to know. I was told that with my ANA being so high if I came back positive on the DS DNA or the anti-sm (smith test) that I for sure had Lupus and if I came back negative then I might have Lupus. But that the positive ANA along with a positive DNA would give us the answer. I have so far come back negative everytime they do a DNA test and also neg. on the smith test. But she also took blood again last week because I have syptoms that overlap and she believes I could have false negatives or even more than one autoimmune disease.
I really don't want to scare you, I just want you to know that you should go to a Rheumy. As far as the possibility of something being wrong with you organs that you don't know about, well your Rheumy will do blood work that will show that evrything is fine. He/ She can do a liver functions test just through bloodwork. They should also physically feel around on your body the first time you see them and check your spleen. They can tell by feeling if it is enlarged and I think you would have pain if it was.
So I know I may have told you things that will worry you and I just want you to please take a deep breath and relax because for one if you are not having pain or difficulties that are making it hard for you to get through the day then your organs are more than likely not being affected, so don't worry. Do however, make an appt. with a Rheumy and go over everything you have been experiencing. The rash across your face does not have to be perfectly across your nose and cheeks. I was told a lot of people don't even get that. I had it during the winter and last summer but for now it is gone. Mention to him/her the difficulty swallowing because their is an autoimmune called sjogrens that could be involved. Again, I am half ready to delete this because I don't wnat to scare you. I am just trying to get you to see a Rheumy and maybe know a little bit from what I have had to go thru. If I could somehow help one person get a diagnosis quicker and with less difficulty then I have had then maybe my tears and frustrations would be worth something.
Your very honest words are much appreciated; I'm the kind of girl who wants to know the truth, the whole truth, etc.; you get the picture. As soon as the dermatologist gives me the results from the last set of blood tests (CBD, CHEM: Metabolic, and another one that I can't recall), I think they are going to schedule my appointment with the Rheumy--maybe I'll get in more quickly that way!
Thanks for all the valuable info. Each day I gain another piece to this enigmatic disease!
I still feel kind of uncomfortable and hope I didn't scare you. I'm glad it seems you took the information the way I tried to convey it. I only know what I have been told, read and experienced so take all I said with a grain of salt. I just hope somehow I can help.
Good luck and God Bless. It will all work out, it's just sometimes a long road to get answers.
PS Make a folder and ask for copies of all lab work from every doctor you see. It will help you in the long run. Also, make notes when you think of something you want to ask and take your notebook and your folder with you to every the doctor. It has helped me a lot doing that.
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