I’ve found your information to be helpful, though based on what I know antibody test are not sufficient to diagnose lupus. The same is true for scleroderma. At least according to the Lupus Foundation and Scleroderma Foundation.
aura
I test positive for the antibodies MOST of the time but not always But it is barely positive do doctors tend to dismiss it. Some people do test positive and do not have lupus. Yet, I’ve had doctors tell me if you don’t test positive you don’t have it.

I even test positive most of the time for one antibody that most doctors say always means lupus. But I think its 20% of those with lupus test positive for anti nucleus antibodies. I do sometimes, I think most of the time but not always. I test positive for the standard anti-dna most of the time. Use to be 1:40 most of the time but the last test I saw was 1:80 that’s getting more definite.

There are seven things or there were seven symptoms to diagnose lupus. The last time I saw the list, I think it was down to five.

Lupus is most often diagnosed by history. Unless your anti-dna is like 1:200 that test along is uncertain. Maybe its less than that as that is a highly positive count.

I don’t remember what the seven things were but I had six of them though some doctors discount my positive test. MOST rheumamologist do not. They say I have lupus but I found one very good lupus doc that was not sure at all. When you go to see him, he’ll likely get a call from another doctor that needs help making a dx or with a treatment plan. I got to hear some of those conversations. I find them very interesting. I came very close to a major in pre-med but with my health issues it probably a very good thing I didn’t do that. I didn’t do it because I was poor and I needed to make money faster than that. I love biology, but such at chemistry. I probably wouldn’t have made it through the chemistry parts.

Its all very interesting to me even if I didn’t have it. There’s no doubt I have lupus in my mind but what I probably have is mixed connective tissue disorder as I have symptoms of several of the auto-immune disorders. There is a doctor that visits my page and she told me that was likely the most correct diagnoses. Funny thing, I told my doctors that 20 years ago.

But they know medicine much better than I do. While I’m sure doctors know things about me I don’t know, overall I know more about me than they do.

I really don’t dwell it. I have some limitations that bothers those around me much more than the bother me. I just do the best I can. Funny, I get criticized a lot for doing the best I can. Lately, there are a few things I could be doing better but I want go into them as someone will make me mad. Telling me how stupid it is when I already know that.

I don’t really think of blaming the doctors for thinking I’m a hypochondriac but if I were going to blame someone, who else would I blame? Some don’t like it that I research things. Some get offended if I tell them too much. I try not to just steer them there but sometimes I have to do more than that. When I brought up scrleo with my present doctor, he firt totally dismissed it. Then he looked it up on the web and I talked with him more and I could tell by the end of the visit that he wasn’t dimissing it any more. I could also tell, I know more about sclreo than he does.

No, I wouldn’t dismiss anything you said. I’ve gotta go work on stuff. I’m swamped with site problems right now.

Lupus can be diagnosed by blood test, looking for certain antibodies. If docs have said it’s an auto immune disorder, but not Lupus, odds would seem good your blood test said that. That’s definitive.

Remicade is no longer new. It has rocketed up the annual sales list of drugs. Some of that is price. Some of that is . . . it works for the people with the disorders. If you’re at a teaching hospital, they know about it. Chat with them about it. It’s at least 10 years old now.

A bit of perspective re Remicade and other drugs. Drug companies don’t make money curing disease. They make money treating disease. The most lucrative drugs keep a patient alive and happy to be on that drug, but it doesn’t cure the disease. If you cure it, sales stop.

Address docs thinking hypochondriac thoughts (and don’t blame them, they see nearly 100 patients a week and of that hundred, 20 are hypochondriacs) by having your written medical records. For your life. If they see records of you being treated for the same thing since your 20′s and 30′s, they will stop the hypo thoughts. Maybe try to email your old docs back in the US.

Last thought, your body size and age. It’s pretty common for a person to say or think . . . I’ve been on this drug before and it used to work but now it doesn’t. Or I tried this drug and it didn’t work before so I’m not bothering with it now. Drugs go into you and establish a concentration level in your blood/tissues. If you are treating yourself and you read that such and such a dosage is normal, but you are very much overweight, then the dosage you have specified may be too low to reach a desired concentration. You either have to research this or talk to a doc. Preferably talk to a doc. Similarly, you have never been 53 before. Your body changes with age. Drugs that used to work might not now, and vice versa. A big part of all this is going to a doc, who sees you as one of 100 that week, and have him prescribe something and it doesn’t work and you dismiss him. Bad move. He is working from the same cookbook any other doc works from. You have to give him time to try other things and other dosages.

I’m not even sure now it is lupus. Many doctors were not but they knew I had some kind of auto immune disorder that was kicking my butt. One called it “horrible auto-immune disorder but its not lupus.” Others were certain it is. I’ve had symptoms of CREST since my early 20′s but no skin problems. I didn’t know what CREST was until about 3 years ago. When a scaly patch appeared on my finger. I was afraid it was scleroderma and I discovered CREST while researching that. The choking, gerd and esophagus spams were really the only symptoms I had of that until three years ago. Since then my frequent chest infections have returned and my hands and feet are covered in plastic like skin that tightens, cracks (which hurts) and then peels off.

The doctors in the city where I live wont even treat me. I need a three hour bus ride back to Cebu City to get that. The doctor I’ve been seeing isn’t getting the job done. There is a rheumatologist. next door to him but he has this huge study going on and he seems more interested in that study than anything else. Even my girlfriend made the same observation. I think it is time for me to change to another hospital. It is a teaching hospital. I like my doc and he does know his medications VERY well. I’ve not had a freaking blood test in four years! I thought he had ordered one but he had ordered a full battery of test that would take a week, including some I can’t do. Like a walking stress test. I need one but it needs to be chemical. I ended up getting nothing. Right now, I’m low on cash, can’t get all those test done. I’m hoping that wont be a long time issue. My online business went south on me last month. I don’t think it will be a long term thing. That’s going to delay this a bit. I need to move back to Cebu City. I love living out here in the jungle but the lack of medical services available is an issue. I have to either move or get a car.

I had the classic butterfly rash, vasculitis (small vein and mild). When I woke up with bilateral bells that’s when the Prednisone started at 90mg a day. I was on 60 for a long time and often felt like I would die. I think you know that lupus does still kill but now usually its not direct. Does still happen though, you seem very knowledgeable.

I looked up that drug, I can see that is not one I”m going to go to a pharmacy and buy over the counter and give it to myself. haha Paramedics have a hard time finding my veins. I sure can’t do it. I don’t know if it is here or not but it does sound like a good option for me to look into. I can get stem cell therapy here. I just don’t know where. Right now, I’m basically treating myself. Several rounds of prednisone at 60mg a day for a week. That use to work for about a month but its not working any more. Doctor prescribed the first round. Now I’m taking 10 mg every other day. know I’m playing with fire. This has been going on for a year now with my hands and feet.

Oh well, I’ve rambled on enough. It was the bilateral bells that got the diagnosis of vasculitis but my hand turning black one day and the lump on my leg and the red dots that I still have told me long before that. Also the test for bells were negative and indicated “something centralized” but could never be found. Its been many years since I had a return of the bells. About seven major ones only one bilateral. When that happened, the doc said “well you can’t fake that.” LOL Yes it has all made me a bit of hypochorndiac. But tht is because so much of what I use to think was normal was not normal at all. I haven’t a clue what is normal and abnormal any more I hate it when the docs treat me that way. If they think I don’t know they are thinking of that, they masively underestimate my skills of observation. Not as good as theirs though, I’m sure.