[Karen B]

I have had a positive ANA (1:18 ) and a positive dsDNA after going to dr with swollen joints.

I never thought about lupus, but now doing the research it all makes sense.

If I have Lupus (GP referred me to Rheumatologist 3 week wait) then I got it back in 1993 - it was a very rough couple of years, joint problems and skin rashes but I never connected them nor did any dr. Sissy has RA so they tested me for that at the time and I would guess they also tested for Lupus though I was unaware of it. Presumably it was neg as was RA.

this time my symptoms aren’t as sever as they were in 1993-1995 but significant and enough to make me pursue treatment.

My question is two fold
1. Has the disease been doing bad things to my kidneys (I pee all the time) heart (I have an irregular beat), lungs &/or brain? Even though I've been relatively asymptomatic all these years?

2. Is the course from here out predictably mild given the long remission and my current age of 49?

I know I should wait and ask my dr – of course I will but appreciate your thoughts on my condition.

 

[*~aurora~*]

hi,

From what I know an ANA of 1:18 is usually considered quite low (I think 1:40 and 1:80 are about where the cutoff is), but with the dsDNA it may well be autoimmune.

The only way to know if it's affecting your heart, kidney, and lungs is to see a doctor! We're not medical experts and can't even see you over the internet, let alone diagnose you. :lol: If you're concerned please please please ask your doctor, it's not something to mess around with.

Don't forget there are other things out there... including even some viruses that cause joint pain, rashes, etc. Lupus is another great imitator, because it can be very tricky to diagnose and the symptoms are extremely similar to many other issues. Hopefully the rheumatologist will have some good insight into your situation.

That said, I think I've had whatever apparently autoimmune thing I have since birth... I had an extremely bad reaction to shots as a baby, and apparently it wasn't uncommon for me to have a fever of 101 or so (my mom says I was just a warm baby with a fast metabolism, hmm, don't know), and I've had minor joint problems and moderate fatigue for as long as I can remember! However, I didn't get really sick until I was 15-16 and got a lot of shots for college... since then it seems like I've been "sick" pretty much nonstop and have a lot more lupus symptoms than I did as a kid.

Good luck at the rheumie and keep us posted.

 

[Joandublin]

Hi Karen

Welcome to the Forum

Im wondering if you mis-typed your ANA titre as 1:18 doesnt make any sense in terms of the usual titre measurements that are used for the ANA. Anyway, thats sort of irrelevant as you have your referral to the Rheumy anyway

To answer your questions:

1. Has the disease been doing bad things to my kidneys (I pee all the time) heart (I have an irregular beat), lungs &/or brain? Even though I've been relatively asymptomatic all these years?

There is no way to know if the disease has affected your kidneys or other organs without more in depth testing. Lupus is not a progressive disease in the way that, say, Parkinsons is. The course of Lupus is never the same from person to person. Some people will have a very 'mild' journey with their disease and need minimal interventions or might have infrequent periods of flare ups. Others will have regular flare-ups or have ongoing organ attack that needs aggressive immunosuppressive treatment.

If it turns out that you do have Lupus, then the important thing will be to find out how it is affecting you and what treatments, lifestyle changes, etc will improve things for you.

With specific regard to the kidneys, the first thing that would be checked is whether you have protein leaking from your kidneys and this is usually carried out with a dip-stick. If high levels of protein are shown this can then be followed up with more detailed testing. Many people leak small amounts of protein here and there and their doctors would operate and 'monitor and wait' approach. Sometimes the protein leakage will go away by itself or other times it can get to a compromising level. Just peeing a lot would not indicate kidney problems of the kind normally connected to Lupus. Having said that frequency of urination can mean a urinary tract infection and UTI's do seem to be quite common in people with Lupus.

Did your GP check your urine when you went to see him? He really should have but many GP's overlook how important it is as a lot can be gleaned from a simple urine sample. If the frequency is recent onset I suggest you go back to your GP with a sample and ask him to test it. It could be an infection and a course of anti biotics will see you right. In any event mention your frequency to your rheumy as well.

Your second question

2. Is the course from here out predictably mild given the long remission and my current age of 49?

Its a good question but unfortunately not one with a straight answer! Every member here on the board could probably tell you, from their own experience, a different story! However....the good news is that statiscally Lupus tends to be more aggressive and serious the younger you are. (I can hear all my fellow 50 somethings shouting at me now! :lol I am 51 and have been diagnosed now over three years and there are many times when I would like to wipe the word 'mild' out of the dictionary However I dont have serious organ involvement although I have had a lot of problems related to or triggered by SLE to deal with, e.g. hypothyroidism, high blood pressure, osteopaenia, carpal tunnel syndrome, B12 deficiency, meralgia paresthetica, fibromyalgia, tendonitis, etc. So statistics are definitely in your corner

The best of luck and let us know if you need any advice for your Rheumy appointment. Make sure you write down your list of symptoms beforehand and if you do get any rashes before your appointment, take photographs of them.

Take care for now
Joan:rose:

 

[Douglas]

Howdy and Welcome,

As to your questions, "1. Has the disease been doing bad things to my kidneys (I pee all the time) heart (I have an irregular beat), lungs &/or brain? Even though I've been relatively asymptomatic all these years?"
I had a long time off, more or less, then was hit by the proverbial Mack truck (or rabid wolf) and here we are.

"2. Is the course from here out predictably mild given the long remission and my current age of 49?"
I hope so!!!!!!!!!!!!!!!!!!!!!!!!!! Terrible though things have been on occasion, I would still say that my SLE is very mild. The MD did say I was "lucky".

I hope you are even "luckier"!

Douglas+

 

[Karen B]

thank you guys for your insightful replies -

yes - I mistyped my ANA it is 1:18

I don't think the urinary issue is a UTI - it has been more chronic and less painful, though I've had occasional UTIs right now that isn't it, IMO.

Today I feel really good - not even that tired - they say arthritis isn't affected by the weather but for me it always is and we have had wonderful warm weather lately - highs in the 50s (I live in Boise Idaho).

Douglas - mild is a relative term here as is 'lucky' isn't it? Well, hang in there, My gf from high school died in 1984 from Lupus so my impression of the disease is pretty dire. She suffered. I am uncomforatable.

Take care all

much love