Anyone Here Have LUPUS?

Me! Diagnosed at 25. I had a really rare type that transitioned into SLE. My aunt has it too.

SLE?

I have it. it's a tricky diagnosis. Get to a good rheumatologist for testing and treatment. Take it seriously. None of that, "oh I'm not going to let this change me," if I want to sit in the sun at the beach, I will. Damage done never leaves you.

Yeah, what is SLE?

My best friend has it. His started out really weird with blisters all over his body (except his head and neck), even in his mouth, but no involvement of his other organs so it took awhile for him to get a diagnosis. Doctors actually didn't have a clue what was going on because his particular manifestation is so rare. He was on isolation in the hospital for about a month before they finally figured out it was Lupus. Later, it started trying to eat his kidneys, so he had to take chemotherapy and now he takes medication meant for transplant patients to keep his immune system in check. Looking at him, you would never know he has it. Even I sometimes forget. The only reminder is his reduced energy on occasion.

SLE = Systemic Lupus Erythematosus

Thanks, R5 for the SLE definition.

Is he tender to the touch?

I have rheumatoid arthritis but the inflammation markers in my blood were very high.

Rheumatology is ripe for a breakthrough that would help all auto-immune disorders. My cousin is about the same age and has lupus, and was shocked that my inflammation markers were higher than hers.

I know someone who has it. You wouldn't know from looking at her. But it's a rough disease.

SLE = Systemic Lupus Erythematosus

My mother-in-law has it. She is as thin as a rail and has problems keeping on weight. The good news for you is that you have a place to start from. When my mother-in-law first got sick they had no idea what it was and it took a long time to figure it out. Hers seems to be triggered by stress. It sounds like a drag, but it’s forced her to take really good care of herself. Besides the lupus, she’s the healthiest person I know. She exercises regularly, follows an autoimmune friendly diet (she says this helped her A LOT), and generally just watches out for her own well-being. The other thing she says has made the most difference is finding a good doctor who specializes in autoimmune disorders.

Lupush.

SLE = shitty life experience

It is tricky to diagnose. A neighbor was diagnosed with it but no medicine was helping, come to find she has had MS all this time . So now she has to come off all that Lupus medicine and start on MS meds.

I don't have the butterfly rash that seems to be most telltale sign of the disease, so maybe I just have arthritis. But the genetic markers are concerning, too.

"I've always thought of lupus as one of those tacky diseases that missionaries get, darling."

Sounds like Chronic Fatigue Syndrome

Lots of self-diagnosis by fat women who blame their laziness and lethargy on it. They’re usually pain pill shoppers, too.

Far too many people require dialysis, kidney transplants or outright die from Lupus for it be lumped in with the Fibro and CFS-type illnesses.

ask Lady Gaga, OP. Maybe you're a junkie too!

Lupus is the look good feel bad disease, lucky me!

The biggest issues I've had in 22 years has been that I'm allergic to the sun and I have fatigue and joint pain. I cannot go into the sun, have to wear long sleeves and hat when it's 90 degrees. I cannot tolerate anti-malarial drugs that lessen the symptoms. An hour in the sun will cause a day of extreme fatigue and joint pain in my hands when they're more or less useless. More than that would send me to the ER. I've heard of someone who lost kidney function from sun exposure - permanently.

I'm treated by a rheumatologist.

allergic to the Sun? WTF

For R21:

R20, you sound like me. With other auto immune diseases thrown in, including a competing one that hates the cold, Raynauds. So, no sun and no cold. Where the hell do I live when I retire? I had symptoms for years but tests weren't defi drive untilninwent out in late-day sun for a few hours (covered in sunscreen) and the next day I was in so much pain I thought I would be hospitalized. And auto immune disease likes company. Right now I have 5, maybe 6 verified AI diseases. Fun.

R23 here. Sorry for typos.

With RH, I love the sun, as long as it's not too humid.

I take Gabapentin and thought it was useless, until I stopped taking it.

No lupus, but I do have parches of skin that have an allergic reaction to sunlight and am very thankful to Coolibar for clothing so I can still go to the beach and spend lots of time outdoors.

What is the sex of those of you on here claiming to have this condition?

Systemic lupus erythematosus (SLE) IS lupus. Only fraus who have discoid lupus claim they have “lupus.” That condition is just a skin problem though.

SLE is nothing like fibro. It’s no joke. It can cause organ failure and death. It’s often manageable, but it actually has a legitmate pathology and not whatever elusive thing fibromyalgia actually is.

My cousin has it. She was diagnosed at 16 and is now in her early 60's. She lost a kidney and a lung (although maybe just partial)

She is a HUGE pain pill popper. Steals from everyone in her family. Cant hold a job. Married a weed smoking loser. Ruined her daughter.

I'm much younger than her so I wonder if Lupus and medicine she took for it contributed to her behavior as an adult, or if she would have turned out the same regardless.

Of course it did. But pain is pain. Life isn't worth living if one is in constant pain so I can understand why the ill turn to pain pills and pot for a bit of relief

Hard to say r29 when it comes to autoimmune disorders. If my RH had been diagnosed earlier, and I'd had a different rheumatologist, I might have been prescribed opioids and become addicted. My doctor won't even prescribe medical weed to people like me who spent our free time as teens getting stoned.

About 10 years ago my nephew was helping a friend re-roof his house and fell off (only one storey) He broke a shoulder, an ankle, and a knee he'd broken while skiing about 5 years prior. He was prescribed one of those oxy opioids for pain and ultimately it took a few years and a methadone programme for him to finally recover. Everyone is vulnerable.

OP, you really have to see a rheumatologist who will run a thorough blood panel to know for sure, but I wouldn't worry too much. Those genetic tests alone really don't mean a lot, more concerning would be close family members with lupus or other autoimmune disease. I have the genes for narcolepsy, but I nor my family ever showed any signs of it. Also 23 and me test results can be difficult to read, you may be reading into something that isn't there, it's best not to internet diagnose with something like this.

Is that rabbits or wolves?

Depends.. is there a prize if I do?

R27, you nitwit, Lupus hits women more often, but it hits men harder.

Start cradling your mug: you’ll be fine.

Lupins???

OP, you’re the reason why they give people the option of not looking at their health profile. Now you’re dying of everything.

I have had lupus for 27 years. I was able to work full time as a RN. However my "flares " included pericardititis, pleurisy and cerebritis. Plus lots of joint pain. When in remission I lived a normal life, except for the fatigue. Get a good MD, stay out of the sun and rest up. You will be OK.

My cousin was recently diagnosed with fibromyalgia, but he has a weird rash that comes all over him sometimes if he's in the sun, it makes him very ill. He also has a red cheeks that we always assumed was rosacea. He's exhausted and in pain all the time, has joint pain, but that could be his arthritis. Has gastrointestinal issues, but fibromyalgia comes with that.

I feel he's not getting proper diagnosis and care because he is on Medicaid. I can't help but wonder if he has lupus. The exhaustion is extream. It doesn't happen often, but every now and then he sleeps for 24 hours straight.

Lycans

Ok I don't have LUPUS hut my Grindr pics have just hit the Internet! I am so ashamed!

OP, R32, everybody - the labs may or may not be significant because you could be positive on Monday and negative on Thursday. They check if your ANA is high, and it may not be even if they eventually diagnose you with the disease. Lupus is treated SYMPTOMATICALLY. Consequently, if you have no serious symptoms, there's no treatment. I wouldn't waste your time at this point, OP.

Another symptom I have and forgot to mention: Nerve pain. I have in pins & needles from head to toe, sometimes it's painful enough that I can't wear shoes. It feels like you have bugs crawling all over you. Annoying as hell, but nothing like R39's flares.

Does the rash always come with Lupus?

NO, R44.

I have fibromyalgia and when I refused to accept the diagnosis and was convinced I needed to somehow find a more knowledgeable doctor who could cure me, the docs would ask me if maybe it was Lupus. I’d think, “you tell me, how am I suppose to know!?” Finally I gave up and accepted the fibromyalgia diagnosis and the social ostracism that goes with it.

That’s because neither are real diseases, R46. They don’t like to say that out loud but both are basically what get diagnosed when you complain about stuff that they cannot test for, i.e., it’s in your head

R47, you are close enough to the truth, but you just miss it. I can’t speak about Lupus, but fibromyalgia is a syndrome - a collection of symptoms occurring together indicating a common cause for which there is as yet no conclusive test. Just because there is no test doesn’t mean it doesn’t exist. If science worked that way, Columbus would have sailed to India.

R47 = IQ of 12

I have Lupus. My blood is positive for antinuclear antibodies (ANA) which is the true marker for Lupus. The ANA is kept in check by Plaquenil (anti malarial). I also take 750 mg of Naproxen a day. I limit sun exposure, try to avoid stress and get rest.

I still have symptoms, like the rash, pleurisy, Raynaud's, fatigue, etc. But as soon as any of these things flare up, I adjust what I'm doing until it quiets down.

I feel pretty lucky. It was caught fairly early and Plaquenil is miraculous. It's considered, "disease modifying", because it quiets the ANA which would otherwise be wreaking havoc. The side effects are minor. It suppresses your immune system which in my case, means a small cut won't heal without diligence. Bandaids! Sun exposure to a small cut will actually cause it to swell and fester.

It's a bit depressing to deal with though. It's a burden is all. No way of getting around it. It's like being an alcoholic in a way. One drink and your life goes to hell. Thirty minutes in the sun can wreck me for a week. No one likes being sidelined.

Selena Gomez has lupus and had a kidney transplant last year.

No wonder she dumped Beiber. Who needs the stress?

High ANA is not necessarily lupus, you need other blood markers testing positive or more severe symptoms. It can be indicative of other issues, I had one of the highest ANA counts for over a year after getting Lyme disease, I also had a malar rash for a few weeks around this time and some other weird stuff. Other infections can cause it too, and some other diagnoses I can't remember.

My point is that while lupus patients almost always have high ANA, not all people with high ANA have lupus. I believe it is a complicated diagnosis and that is why it takes time, but since that was over a decade ago, obviously I do not have it. I was told high ANA was not a big deal on it's own.

R48, you're right about fibromyalgia being a syndrome. Latest research and understanding is that it develops in response to emotional and/or physical trauma. I developed it after a car accident where I injured my neck. Essentially, your flight or fight response is overactive and symptoms are a result of that. Lupus, Lime, and MS were all suspected for me at first and ruled out one by one.

Also...hope you're okay, OP! My sister-in-law has lupus but won't talk about it, so I don't know much about it.

Yes. I have drug-induced lupus which started in my early 50s. The first sign was the facial rash which was like a textbook photo. Then came joint pain, so my GP prescribed me Plaquenil and referred me to a rheumatologist. By the time I got into see the rheumatologist, the fatigue had set in. I kept trying to work, despite the pain and fatigue. I was put on methotrexate, which worked but has unpleasant side effects. Prior to a root canal, I was given an antibiotic. That plus the Plaquenil lead to oral candidiasis, which is miserable but treatable. And I lost six pounds because I couldn't eat for days. I finally quite trying to work and am on disability. I miss my career. Plus I look healthy, so some people think I'm slacking. I have, at least, been able to go off the methotrexate. So far, no major organ involvement.

Thought lupus mainly affected women, is this whole thread women?

I am pretty sure it will shorten your life expectancy even if you take care of yourself.

"Plaquenil is miraculous"

Yes, but I had to go off after 20 years because of retina damage and hearing loss - both caused by Plaquenil. I would do it again even knowing it caused these things, but since I don't want to end up deaf and blind, no more Plaquenil for me.

This who are on it - I hope you're getting a yearly visual field test by a ophthalmologist to see if there's been damage.

My friend takes Cellcept, Plaquenil and Prednisone. Maybe excessive? but it's working for him and he rarely even gets a cold despite the immunosuppresion. He also gets bi-annual eye exams to check for Plaquenil-induced retinal damage that R57 mentioned. He still "spills protein" but has said it's been trending down at every test and all his other markers are normal. He's only 31 (diagnosed at 25), btw, so Lupus really can hit anyone.

R57, plaquenil was wonderful until my skin started turning a pretty dark shade of gray. In large blotches kinda overnight. It took 2 years after going off it for the gray to fade and if I do happen to get unexpected sun, the patches can be seem again , though they're not dark. Too bad, too, I felt normal on that drug and cannot take methotrexate.

Fibromyalgia affects women 9:1 over men - however, it does affect Gay men more frequently than straight men. How about that?

The cause of Fibromyalgia is not clear. My specialist who did research before retiring reported that the “fight or flight” explanation was debunked. I can’t recall an accident of my own that might have triggered it. My PCP says it is a sleep-related disease. If you wake someone repeatedly to stop them from entering a certain stage of sleep, one which those with Fibromyalgia seem to lack, the experimental subject can develop symptoms of Fibromyalgia in as little as one night. Others say that the lack of such sleep isn’t the cause, it is a symptom that is caused by something else.

My experience is this: lots of doctors are certain as to the cause of Fibromyalgia. But they don’t all agree with each other! And that - is the problem!

Can’t say about Lupus.

I thought there wasn't a definitive test for Lyme disease.

R61, I think there is a test now.

r61 A positive test and a bullseye rash are pretty definitive, though not everyone gets the positive test or the bullseye. Also if people find a tick on them they can get it tested.

Does anyone else on this thread with an autoimmune disease get red splotchy rashes after showering?