about lupus

I have a few general questions I thought i'd ask here to Sandi and others that check into this spot. I don't have lupus but do have some of the markers so to speak and figure it might happen one day. Not the best attitude maybe but I'm trying to be realistic. Anyway...

Are there annual meetings for people with lupus (like the ITP one coming in Boston) and for lupus researchers-experts?

Is it possible to have lupus and not ever be affected (not have a flare I guess)?

How worried are you about organ damage that could occur without other symptoms?

Is death from lupus or the need for an organ transplant rare? likely?

thanks!

Hi, I was diagnosed with discoid (skin) lupus when I was 20, and then, 25 years later, diagnosed with SLE when I turned up with ITP too. ITP is the most bad thing I've had with lupus. I don't seem to have any organ problems after all these years. I've never had a strong flare, I sometimes feel a little flu-like for a couple of days and assume that's a flare. I think lupus is a really broad spectrum and you can have a few or a lot of issues. I get kidney tests at least annually (blood and urine, nothing invasive) and everything has checked out ok so far. I don't have pain issues from lupus.

After I went into remission from ITP from Rituxan, the other symptoms I was having that were secondary to lupus (hair loss, vasculitis on my palms, fatigue) also went away.

I don't know what will happen next, sure I worry. But so far so good.
Erica

Hello! I don't think it's unwise to question this. Better to be prepared.


Are there annual meetings for people with lupus (like the ITP one coming in Boston) and for lupus researchers-experts? I don't know - never looked into it. I do know that there is a lot of research, but it hasn't gotten very far.

Is it possible to have lupus and not ever be affected (not have a flare I guess)? Some people have mild Lupus and rarely have any problems. As Erica said, the symptoms are so broad and it affects everyone differently.

How worried are you about organ damage that could occur without other symptoms? I used to worry more than I do now. I have labs dome every 3 to 4 months and they have been good for a while now. Since I have the antibodies that can affect the kidneys, I stay on top of that by having labs done when I'm supposed to and by keeping copies for reference. I actually worry more about heart disease, which is one of the leading causes of Lupus deaths, but I've gotten to the point of "whatever will be, will be". I can't control it. I take the daily aspirin like I'm supposed to (to prevent atherosclerosis) and I manage high blood pressure. My cholesterol is good, so at this point, I'm doing all I can.

Is death from lupus or the need for an organ transplant rare? likely? Well, according to statistics, 10% to 20% of Lupus patients die due to Lupus complications. Obviously, that means that 80% to 90% live a normal life span. I wouldn't say it's rare to die from organ involvement, but the odds are in your favor. Most of the time, the people who cannot control Lupus have the toughest time, or the ones who are not diagnosed until the damage is done. I feel that for the most part, my Lupus is controlled due to the labs coming back okay. The symptoms are a different story, but won't cause death (unless I call Dr. Kevorkian).

Yes there are annual meetings and walks,,, Just go to the Lupus Foundation of America's website and you can get info there. I am very active with my local chapter here in South Florida. I think everyone else has answered the other questions.

BTW, my lupus affects my skin, joints and blood thus far, had to have my gallbladder removed.

Thanks to all of you for your replies.

Erica - if I may ask, how did they diagnose your lupus if you don't have pain?

Sandi - which antibodies affect kidneys and what causes the heart problems associated with lupus?

thanks

My discoid lupus was diagnosed with a skin biopsy. My SLE was diagnosed with blood tests (and Sandi is more expert about these but I think it was an ANA and one or two others - I know one had always been negative and had suddenly gone positive). Lupus is diagnosed when you have a certain number of indicators from a list. ITP is one of the possible indicators that can count.
Erica

The dsDNA antibodies are most affiliated with kidney involvement. I have had those, although it's been negative for a while now (good)!

The heart problems are due to several things. Here are some articlea about it:

www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?articleid=416&zoneid=17

www.lupus.org/webmodules/webarticlesnet/templates/new_learnaffects.aspx?articleid=2301&zoneid=526

www.medicalnewstoday.com/releases/96062.php

thanks Erica. I've seen that list and I guess I don't get if some count more than others. I'm told my ANA could just be the ITP but I'm also weakly positive for antio-Rho so it could be lupus, raynaulds, or sjogrens I guess. when I look at the list I can't tell if having low iron (anemia) counts as an indicator on its own or if 'blood issues' is considered as a group. anyway, the rheuma doesn't have enough to go with yet I guess, particularly because I don't have any joint pain. I have to call to get my latest test results though. I get so scared thinking about lupus to be honest but you guys have made me feel better.

sandi - thanks for the info - I'll read the links. Glad you've been -ve for a while!

also - I understand sun and alfalfa are best to avoid. anything else?

I' ve read that melatonin is a bad idea if you have autoimmune disease. I'm also wary of anything said to 'enhance the immune system' or anything like that, my immune system is overly enhanced already.
Erica

and no echinacea.

thanks specialk!

erica - that's interesting. I had bought some melatonin a while back for the ITP but didn't try it because we were trying to conceive and I didn't want to mess around with the baby in mind. There are so many things that are advertised to "boost" or enhance the immune system. it's funny that they don't get how that can be a bad thing for many people. I thought melatonin was a 'balancer' but who knows.

And sulfa antibiotics....

thanks.

one more question...I understand plaquenil is used to prevent problems (flare?). What prompts someone to start taking it - is a certain markers, antibodies, pain?

Some astute doctors will start a patient on Plaquenil if they suspect Lupus is a possibility but not yet diagnosable. My Rheumatologist did that based on elevated ANA, low C3 and C4, ITP, elevated SED rate and symptoms. I hadn't met the criteria, but was close.

I've read some studies that Plaquenil can prevent or prolong a diagnosis because it can hinder antibodies. I believe that.

I started on plaquenil to reduce the discoid lesions and it worked great for me. That was back in 1989. I've been taking plaquenil ever since, with a 2-3 year break when they thought it could be related to my platelet problems (it apparently was not). I have no side effects or issues with it that I'm aware of. I do have to get the boring eye test at least once/year. My doctor thinks it will help with my recent extreme sun sensitivity but if it is, it only helps a little.
Erica

Like the others... once the blood results came back and they determined it was something autoimmune going on with me either Lupus, Sjogrens... they started me right off... my platelets didn't drop until 6 months after my diagnosis and then when it kept dropping they determined it was secondary ITP and started labeling as chronic... Plaquenil has not stopped my flares... but I just don't have as many. I am usually affected twice a year... but for some reason this year it is kind of lingering.

very helpful guys. I can't help but ask all these questions to you right now - hope you don't mind. Right now I have a high ANA, weakly positive anti-Ro and ITP in remission but no other symptoms so I guess we're sitting on the fence. I'd like to breastfeed as long as I can so I'm okay with this for now but can't help imagining the worst in all this (eg. dying of kidney failure or other organ issues). This all seems so much more frightening than ITP.

Did your doctors consider other autoimmune things like scleroderma and other scary looking diseases that show an ANA?

Why isn't anyone taking biological DMARDS instead of plaquinil?

thanks again

just saw this doc and now understand how to narrow down to which autoimmune disease...

attachment didn't work, here's the link...

www.rdlinc.com/pdf/ANA%20Guide%20to%20Interpretation%20Oct%202002.pdf

Yes, they can usually narrow down based on lab antibody results and symptoms.

What do you mean by biological DMARDS? Plaquenil is a DMARD.

It is more frightening than ITP. ITP didn't affect my life nearly as much as Lupus does. It is life-altering (for me). You can't worry about dying of organ failure, all you can do is monitor and do your best to keep everything under control. If you do monitor, most can nip problems in the bud before they become serious. There are a lot of ways to manage it, not fun, but doable. I was afraid at first, but as time goes on, I have a handle on what's going on and can relax when labs come back okay. At this point, I don't expect or fear bad results and I'd be surprised if I had any. Then I'd deal with it.

Thanks Sandi. I guess people used to die shortly after diagnosis because they weren't monitoring. I was doing reading online and 'biological DMARDS" came up as if they replaced plaquenil as the newer drugs.

Hmmm. I haven't heard of that. I wonder what meds are considered biological? As far as I know, Plaquenil is still the gold standard, along with some others usually.

I take quite a few meds, but always considered Plaquenil to be the most beneficial.

Hi, I've had lupus about 22 years and have been on Prednisone for about 18 years. I thought it was great, it is great, makes you feel alot better...but now I have very severe muscle tissue damage, lots of torn, or atrophied muscles, mostly in my hips and shoulders. I have to have shoulder replacements, but I have to wait till I'm 70, now I'm 59, because they only last 10 years. I can't say that I'll ever get off prednisone because it makes my quality of life alot better, but now I try to stay on the lowest does I can. I'm having trouble getting off of it totally , I have awful flares, but I am down to only 4 mg a day.

I am the same way. I can't live without Prednisone. 15 to 40 mg's a day. I also have a lot of muscle atrophy and can't do a darn thing about it.