I have Systemic Lupus. Since it is World Lupus Day, I thought I would let Reddit AMA!

Are you sure it's Lupus? I was told it's never Lupus.

I am like that episode where it actually was Lupus. Unfortunately, I am not a magician LOL!

Don't you ever get tired of this joke?

Never! Usually every year I use this picture on my Facebook profile for Lupus awareness month.

I was actually going to come in here and apologize for House M.D. on behalf of all writers.

But it looks like you've also been diagnosed with a great sense of humor. :D

Did you work on House? Because OMFG if you did, I want to say thank you! One of the best shows on TV ever!

One thing I have learnt in life is that there is no Dr House. Most doctors are good at memorising drugs names and that is about it. Sure if you have broken bones or need stitches they are great. If you have anything even mildly exotic you will be very lucky to find the right doctor before you die.

I agree with you in some cases. I had an experience with my dad last year. He almost died from a routine operation and his surgeon had no frickin clue what was going on. It wasn't until he coded that they figured out what was wrong. He nearly died from the surgeon looking at the obvious instead of thinking outside the box.

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He had surgery on his prostate due to some bleeding. His prostate levels were normal so it wasn't cancer but varicose veins on his prostate. Well, his surgeon didn't cauterize the veins properly so essentially he was bleeding out from his prostate. He went 6 weeks before they figured out what was going on. They also tested him for Lupus and other clotting disorders because they thought it might be causing the bleeding. He coded due to blood loss.

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Thank you so much! When it comes to my dad, the surgeon will no longer do the surgery due to his errors. I agree it was some sort of personal bias. My dad still sees him for check ups though, so there is no bad blood there.

It is so easy to fall in the cracks in the medical world. They survive in their job by not caring but that is how people die.

I don't know about the rest of the world but in Canada it seems like they don't give a fuck. Oh you have to wait 2 months to see a specialist? Oh well, you aren't ready for the emergency room so I can't be bothered to care. You are someone else's problem 2 months from now because I gave you a referral and now I am done with you. Good luck not dying waiting for the specialist.

I am in the US and I often hear stories of Canadians crossing the border to have the procedures done that they are so desperately waiting for in Canada.

I am sure Obamacare has made some waves in Canada and I don't support it because the road that the ACA is on, in my heart I believe will lead to that. Do I think everyone should have access to healthcare, yes, but I don't think forcing everyone to enroll, who may not have the funds to do so is the right way.

I am in the US and I often hear stories of Canadians crossing the border to have the procedures done that they are so desperately waiting for in Canada.

I hate to be "that person" but you do realize this isn't actually all that true, right? Please don't base everything you know on what you hear from Fox, or "some guy who knew a guy who's mother's uncle's father's pet cat" went through because in almost every situation those are pretty much b/s stories.

For people to cross the border, it's usually to receive a specialized treatment that isn't available here, or because they feel they know more than their doctor and shouldn't have to wait like ~the peasants~.

To put it in to perspective: I got in to an accident, walked to the hospital, was in and out within 3 hours with full x-rays on my back, head, and arm -- this included waiting time for swelling to go down a bit and monitoring for concussion/etc.

My mother had surgery for a hernia/rupture within a few days of it being identified. My grandfather had a triple bypass performed within 3 weeks of his referral.

One of the only problems right now is the shortage of psychiatrists. Non-emergency referrals can take up to 3 months if you're waiting for public care. Emergency referrals bump you up and you're seen immediately. These are mostly in areas where there was a huge population growth in a short amount of time, and not enough psychs to keep up.

Thank you for clarifying more into this issue. I don't personally know any Canadians and it's been years since I have been to Canada. I don't personally watch Fox news but my experience has been anecdotal at best.

Hi! Thank you for doing this AMA, I would like to ask you to explain lupus to me like I am five.

Lupus is when your white blood cells - the blood cells that help make you better when you are sick with a cold or the flu- decide that your body is a space invader mutant zombie warlord. Then these special white blood cells go and attack your organs, joints and skin causing damage to them.

The white blood cells are confused, so people with lupus take medicines that attack the army of white blood cells so there won't be so many of them to attack their body parts.

I hope I did a good job doing this. I subscribe to/r/explainlikeimcalvin so I tried to do it more in that style.

That was great explanation actually, I mean it makes sense to me at least, thanks for the reply!

You're very welcome! I enjoyed explaining it.

So what happens when you get sick though?

It starts off feeling like I have the flu. I am tired, achy and I run a low grade fever. My malar rash ("butterfly rash") comes out bright and pink. It feels like I have been run over by a Mac truck. I wake up and it takes me longer to get out of bed because my joints are killing me. I am 31 and feel 91.

Since I have had it for so long I know this is my warning sign to take it easy and not push myself. If I continue to push myself, I wind up with something worse like pleurisy or seizures.

Well I mean, if you're dulling your immune system, do you get sick more often, and does it take longer to get better?

Oh God, yes I do. My daughter came down with Scarlet Fever this week actually, and I called my rheumatologist and he told me not to take my methotrexate just in case I got it too. I also started getting the flu shot since I am on immunosuppressants. It didn't stop me from getting a stomach virus and then a sinus infection a week later.

Also, TMI but I suffer from chronic yeast infections like thrush. It's gross but it's common in immunocompromised people.

Oh goodness....that sounds unfun. You're awesome for keeping it together.

Thank you so much! I do my best. There are people out there that have it so much worse than I do. I am not the type of person to be all "woe-is-me" .

So how is it going with lupus pregnancies pregnancies these days? They were considered extremely high risk / ill-advised about 30(40?) years ago but seem like the have evolved to, dare I say it, almost commonplace now?

30-40 years ago we were no where near having the treatment options that we have now so Lupus was a slow, painful death sentence, never mind contraindicated with pregnancy. So you are right. I think as the treatment options have expanded, it has helped women achieve and maintain relatively healthy pregnancies.

I was high risk with my son, and I got the joy of doing a 24 hour urine test to check kidney function at 20 weeks, but besides that my pregnancy was text book. I opted for a second c section and I carried him til 40 weeks with no issue. I still had to to do fetal stress tests but it wasn't too bad, gave me an excuse to nap for 30 min - 1 hour 1x a week.

Given that the achniess, etc. is a symptoms of lupus, I don't quite understand the fibromyalgia diagnosis. Fibromyalgia is a syndrome, meaning they don't understant the etiology of the symptoms. Pretty much lupus covers that one, doesn't it? Did you get the fibro dx before the lupus dx?

How long did it take you to get diagnosed after you noticed symptoms?

I was diagnosed with it. I have pressure points in my shoulders and lower back that hurt on contact. That's how my first rheumy diagnosed it. But since I started methotrexate I have been able to wean off neurontin. Do I believe they are related, definitely. I think it's a syndrome that comes with having an autoimmune. Most autoimmune sufferers do report non-joint muscular pain. Some doctor's don't believe it exists, but I do believe it does. It is considered a secondary syndrome due to the auto immune.

I honestly started having symptoms til I was 16. At 25 I was diagnosed.

I've been dxed with fibromyalgia as well, but I believe that, in my case, it's merely a symptom of whatever neuromuscular relapsing/remitting thing that I have.

The reason I believe it's a bullshit dx is that like every "syndrome" including IBS and chronic fatigue, it's got no known etiology or cure, but it does occur in many autoimmune diseases. It's like telling everyone with a cough they have "cough," when some of them have a cold, an allergy, lung cancer or emphysema, etc.

I think if they looked harder at people with fibromyalgia, they'd find hypothyroidism, myasthenia gravis, MS, lupus, Morvan's or some as-yet-unnamed autoimmune disease. Fibromyalgia and IBS are both diseases of exclusion. The trouble is, they don't bother excluding everything. Had you been diagnosed with lupus first, that would certainly account for every symptom including your sensitive pressure points.

I completely agree. I don't think I said this in the other comment but it was at the same time.

I feel like a psycho by asking this, but could lupus be "canceled" by AIDS?

I don't think it's a stupid question at all, and fundamentally it would make sense. I haven't taken immunology yet but in my understanding Lupus is caused by B-Cells that have gone haywire. That is how Benlysta works, it targets those B-Cells. In AIDS, the T-cells are compromised by the virus so it is affecting a different part of your immune system.

Can't you just go get AIDS and fix your lupus through that?

Lupus is caused by the B cells creating autoantibodies. While t-cells are more used for signaling and attacking invaders directly; some can create antibodies. Since AIDS is a decline of your T-Cells, it wouldn't affect your B cells.

Edit: Apparently forgot that how to spell.

What can I do to more effectively help my patients with this disease? Is there anything I should know about it?

Listen to them first and foremost. And especially don't make them feel like it is all in their head. Use your differential diagnosis to understand them and then make your judgement call on what is going on. Also, don't give too much credence to blood work, especially after a string of positive ANA/auto-immune antibody tests. For me, I have only once had a high positive SED Rate and complement test and it was when I had CNS involvement. I had pleurisy with a normal SED rate.

I read a great study on how auto antibodies reside in organ tissue during a flare and not in blood serum which can sometimes contribute to negative serology. It's been a long time since I read the study and it was looking mainly at anti ds-dna antibodies in Lupus patients.

So, would a muscle biopsy (if pain was there) be able to dx lupus?

I would have to look that up. I know of skin and kidney biopsies but I haven't heard of a muscle biopsy, but i could be possible. If you ever pop up with a rash a good dermatologist can biopsy that rash.

It may only be for other autoimmune things like MS or Myasthenia Gravis, but I would have thought that since lupus attacks muscles as well, that it would leave a clue.

It can go after muscles in the form of myositis. How doctor's differentiate "fibromyalgia" pain from "Lupus" pain is by looking for a rash, heat and swelling of that muscle which doesn't happen in usually in Fibromyalgia.

Have you had your thyroid tested? This kind of non-swelling pain is really common in hypothyroidism and most docs suck at diagnosing it.

Edit: I should note that the most common cause of hypothyroidism is Hashimoto's Disease, an autoimmune disease. As you know, if you get one AI disease, you're at very high risk to add another to the list.

I have had my thyroid levels checked about 2 years ago and they were completely normal. I just had a big bloodwork done in April and they usually do a TSH with the metabolic panel so I will find out in July. If it was a problem, he would have called me already. So no news is good news.

And yea, I hate that they come in pairs or triples. It's like they want to bring their friends to the "party".

I do have a persistant rash on my back and scalp. I should get it looked at.

You should, definitely.

How would a lupus rash manifest differently from, say, hives?

In my case, most of the time the rash looks like Sunburn that's red and patchy. I have had the discoid lesions a few times, which look like ringworm on steroids, but I consistently have the bad rash. I have never had a skin biopsy, but all my doctors have agreed it was from lupus, including a dermatologist just by the pattern. Usually hives are brought on by an allergic reaction to something, like a food or a type of clothing.

Constant House M.D. references. I'm sure it never gets old.

Nope, it doesn't!

I actually don't have a question but good luck with keeping it manageable.

Thank you so much for cracking me up! That pic is awesome. And also, thank you for the well wishes!

Hey! Fellow SLE person here! I was diagnosed 11 years ago and I'm still kicking around. Flares seem to have gotten worse in the last 5 years compared to when I was younger. I'm not surprised, because I was without health insurance for a few years and didn't take care of myself. So now, I'm meeting with a few new doctors and tossing around the idea of trying an infusion therapy. Have you ever gone through one of those treatments (rituxan, etc?) and how did it work out for you?

I also want to extend a little invite to you, I'm a part of an online support community called the chronically awesome foundation. Lovely people with varying chronic conditions who all just want to focus on living life as awesomely as we can. We have support group through Google +, and our two founders host a weekly radio show to make us all laugh.

Search the #chronicallyawesome tag on Instagram, Tumblr, Twitter... You'll find tons of people and info. And if you ever want someone to chat with, I'm always around and usually bored. =)

Thanks for doing the AMA, the more people know about lupus the better! You're awesome. http://chronicallyawesome.org

Woohoo! Awesome to see a fellow Lupie here! I will also check out yor group. I used to mod a group on Facebook for people with Lupus and I loved doing it until the group became overly negative. I am always down for positive people and I love to laugh, so you sold me. And once I figure out how to friend you on Reddit, I will! I am always down for meeting new people.

As for rituxan, I know others who get infusions of it but I was never offered it. My doctor has looked into the possibility of adding imuran and/or cellcept to my cocktail, as well as benlysta, but we have been overly cautious. At one point I was on over 20 pills a day and I don't really want to return to that.

I've heard a lot of negative responses to benlysta, so please do be cautious! I am always a little too cautious I think, I need to learn to trust my doctors just a little bit more lol

I've gotten very used to the many-pills-a-day thing, just cause its been so long. But even though I've been doing this my whole life, I'm still a whiny little girl around needles lol amazing that I haven't gotten used to that yet.

I also ninja edited in the link to the chronically awesome foundation in my first comment. We like to host blogs and artwork and other things (poetry, whatever) by anyone who is into spreading info and support or just some laughs. So if you ever want pick up where you left off with the fb group you had, reach out to us!

I agree with you about the negative views of benlysta. I already have a history of organ involvement and when I questioned my rheumy about the study his response was "Are you black, because you don't look black" . I know his humor can't be conveyed in text and I knew he was being funny but still, if it doesn't work for the prime demographic, how can it work for me.

I am lucky I have insurance that will pay for it but I rather wait. And thank you for your ninja editing skills. Once I am done with this AMA I will check it out!

If you don't mind my asking, what negative things have you heard about benlysta? I'm possibly going to be starting it soon and hadn't heard anything too bad about it. I realize there are risks, as with any med, but I'm running out of options soon lol

What I have read is that it isn't as effective for those with organ involvement as they would like. It took them 50 years to finally come out with a lupus specific drug and in preliminary studies it seems like they fell short a little bit.

I too am on the fence with starting Benlysta. If you have the insurance to cover it and I would say try it and see how it makes you feel. Let me know how it works out for you!

My wife works at ALR.org, and you're right, it seems that no one knows about this disease. My sincere appreciation for you and everyone else who is dealing with this, it can be tough. Thank you for doing this ama.

ALR is one of my favorite charities! I am a NY Giants fan but I root for the Jets too, in part, to all the good work their family does for lupus research! Tell your wife thank you for me

You're the one she is doing it for, well, you and everyone else with Lupus of course.

In case you don't know, and for everyone else here: Woody Johnson, the owner of the Jets started ALR. Him and the rest of the board pay ALL operation costs (payroll, office space, etc) so that 100% of donations go to the research.

The other thing they do, which as a science-geek I really appreciate is that everyone who they donate to has to get together and share information. This helps move things forward. (They met this week)

Again, best of luck to you and thanks for getting the info out. It really can help when people are aware. (Before she took this position I had never heard of Lupus)

Peace,

James

She is working for a great organization that donates a lot of time, effort and funds to research. In my opinion, ALR is the number one Lupus organization there is. On Facebook today, I saw they took over Giants, I mean Met Life stadium, for the walk in Jersey today and it made me happy.

I am also a science geek and my passion is biology so I am always keeping up with the breakthroughs and ALR is at the forefront of Lupus research.

Thanks to you and your wife again. Since I have been diagnosed, every May I have been proactive on social media to get the word out. I am relatively new to Reddit, so I figured an AMA would be the best platform

My wife just woke up and said it's great you're sharing and thanks. She also thought since you're a Giants fan I should let you know to come to the walk next year, you get to go down on the field.

Tell your wife thanks for me! I would love to walk but I no longer live in NYC. If I can make the trip up there, I most definitely will. It would also make it easier to build a team as my family is still in NYC/PA.

Hey! I was wondering if you had any feelings about the Spoon Theory? I've always liked it but I was wondering if it seemed accurate to you?

While I do believe Christine Miserandino nailed what it feels like when you just can't do one more thing because your supply of energy is limited, I think the Lupus community in particular has made it their rallying cry for not being able to go out and live a normal life. And because of what it has been interpreted to mean by a specific community, I don't like it.

I know I have limits, but sometimes you have to deal with an energy debt to get things done instead of going around saying "I just don't have the spoons for x,y,z". I have known women who have stage 4 lupus nephritis who still work full time and then I have met women who can't wait to get a true diagnosis counting the minutes til they file for SS disability. And the spoon theory is usually the war cry of the latter group than the former in my experience.

Holy shit...me again...The whole reason the Chronically Awesome Foundation started was because of the negative nature of the "spoonie" community. It's super awesome to meet you. You rule.

I am so thankful you participated in this AMA. I have kept my spoonie comments to myself for the most part because the ladies I have on my Facebook would look at me crooked. I am going to head over there right now since questions have died down. It is super awesome to meet you too and I added you to my friends list!

Wow. Thanks for the answer. I'll be mulling that over.

I know my opinion isn't popular and I have nothing against Christine Miserandino because she has done so much advocating for this disease and her theory is pretty dang accurate. I just don't like how it's propagated in the community.

I'm sick too, and I might even be "pre-lupus"-- I hardly understand it, but I am sick now, and the spoon theory, which I've never heard before, is 100% accurate to my experience.

You seem to agree with that; I'm not familiar with the "spoonie community"-- but how do other people agreeing with the spoon theory make you unhappy about the spoon theory that you say you agree with? I'm a little unclear, is all, about the whole thing.

No need to explain yourself, I understand where the confusion may come from.

While the "spoon" theory is accurate, in my experience as a mod on a large forum on Facebook, is that women will "horde" their spoons. They won't go out and live life because they have Lupus and they fear what tomorrow will bring as opposed to letting tomorrow's worries truly become tomorrow's worries. They give up working careers as soon as they are diagnosed because they "see" the number of spoons they have and are afraid to ration and distribute them. I know one women who refused to take her daughter out on any outings because she feared she wouldn't have enough "spoons" for it. So she sequestered herself, and her preteen daughter, to living essentially like hermits because of what is essentially the fear of the unknown.

It's one thing to use spoons wisely, it is another to look at spoons as a meter to what you are capable of doing, thus forever limiting yourself. And that is why I am not a fan of that theory.

Just wanted to drop in and say that you're cool for doing this. My aunt has Lupus as well, and she too is still kicking it. A great personality and good spirits can overcome a lot!

Thank you very much! I appreciate that too. I am glad that your aunt is still doing well. Having a sense of humor and a good personality definitely helps with this disease. If you have a good mindset about this disease you can still live a "normal" life, which it sounds like your aunt has managed to do.

Unfortunately, in my experience, there are a lot of Lupus patients who are constantly negative. That mindset holds them back in all aspects of their life and frankly, it depresses me.

My father developed lupus very late in his life and from an extremely unusual source (stress on his body from complications from medicine. ) It otherwise might never have shown. It's rough watching him in the bad times but great when he's feeling awesome. Thanks for helping to raise awareness, there are very few people around my area who even know it's a real condition and how it affects people.

Drug induced lupus is rare and I can't imagine what that must have been like for him. It must have been hard to watch your father go through that, especially so late in the game so to speak.

It is a roller coaster ride for the one with the disease and their family is fortunate enough to be on it with them. My kids are young, but my daughter is aware when I am not feeling well more so than I think she would be if I wasn't sick.

My Mom was diagnosed when I was born, so about 25 years ago, with Systemic Lupus among other things. Just wanted to give you all a shout out and tell yourself/ your family members to stay strong, positive and keep educating and talking to others about it!

Also, if you haven't looked into it, see if a service dog would be a good choice for you! My Mom's had her dog 8 years now and he's been life changing for her, especially her confidence.

When I had seizures I mulled over getting a seizure dog, especially since I wasn't sure if they would be chronic or not. I already have two rescue dogs and neither of them would make a good service dog in the traditional sense.

I would definitely consider a true service dog in the future, now they make me feel better by giving me cuddles when I am sick.

Happy Lupus day! live long an Lupus.

This probably shouldn't have made me laugh as much as I did but I got a really twisted sense of humor. Thanks for cracking me up.

Ty for having my kind of humor :D With no humor about your own misfortune the battle is already lost. So kick that lupus in tha nuts for me and salute it goodbye with the middle finger, and i hope you get some symptom free periods. Live long and Coitus!

Your welcome! And you are exactly right, without humor the battle is lost. My husband will definitely appreciate me "living long and coitus - ing" lmao!

RIP J Dilla.

Throw ya hands up for Ma Dukes.

Terrible disease. Thanks for raising awareness.

Your welcome!

Do you have symptoms like the butterfly rash? And do people judge you in public?

There are 11 diagnostic criteria for SLE and at this point I have 10/11. I am one of the few that have the anti dsDNA antibody which is considered one of the two true Lupus antibodies along with anti-Sm antibodies ( I don't have those antibodies)

I do have the butterfly rash, but it isn't like a discoid Lupus rash where it's raised and scaly. If you didn't know what you were looking for it would seem like I got too much sun the day before on my nose and cheeks. I also get a rash on my chest/hands/arms and people often comment that it looks like hives but not in a judgmental way.

I see. I'm glad you don't have to experience judgy people too much c:

Thank you! May I ask if you, too, have lupus? I have heard some horror stories about people asking if they were contagious, if they had AIDS, etc. That always bothers me.

I don't, but I am close friends with someone who does. It really bothers me when people make assumptions about contagiousness.

I don't blame you and you sound like an awesome friend! I have had people ask me if it was like AIDS and that always bugged me. Not that I don't have sympathy for those with AIDS, it was more that the person asking would slowly be backing away like I had the plague and it makes me feel terrible for what people with AIDS have to deal with more so than me.

It's pretty tough to deal with ignorant people, which is why education is so valuable c:

Ding ding ding, you hit it on the head!

No question here. I have lupus myself and have been battling it for 9 years. Thank you for doing an AMA...

Your welcome! I wish you the best with your battle!

THANK YOU! I wish you the same with yours. I love House but if I had a penny for every time someone tells me " its never Lupus" I would be rich.

BTW... I used to get yeast infections all the time and started to buy Yakult probiotics in the yogurt isle which are cheap (5 bottles for under two bucks) and easy to find. I drink one every other day...haven't had one in over three years.

You and me both!. Thanks for the heads up about the Yakult probiotics. Is there a specific store you go to for them? I am in the US and have Kroger, Publix, Food Lion and Wally World at my disposal.

I will be honest, I have one now and it sucks. It seems like they are getting harder and harder to treat with OTC treatments and nystantin. I prefer homeopathic routes with some treatments and I rely on acidophilus/gentian violet a lot.

I feels for you. I have sarcoidosis. Sucks butthole to the max. musculoskeletal involvement confirmed, lymphatic and waiting to know if it's cardiac and neurological.

I am sorry to hear that I hope it hasn't spread to your heart or CNS. I will be thinking about you and please message me and let me know how it turns out!

Are any of the biologics being used for lupus?

Actually, yes! Benlysta is actually the first drug developed specifically for Lupus. It came out about 2 years ago.

When it came out there was flack since the studies seemed to show it didn't work very in African American women with severe organ involvement. Since AA women are the most likely ethnic group to have Lupus there was a lot of negative backlash from the Lupus community over it. The price is also a huge factor, it costs about $30K a year for treatment.

My rheumy has been on the fence about putting me on it. Right now I am doing pretty well with the methotrexate that he is waiting for another round of bloodwork before he makes his decision.

Wow. Incredible to hear your experience. I work in the drug industry, and specifically in a marketing group for biologic that treats another auto immune disease. It's hard for me to sometimes visualize what a patient goes through when weighing treatment options. Your experience is teaching me!

I just want to say hang in there! So glad you are getting good care from your Rheumy.

I am glad that my experience can help you and others in your field understand what patients need and look for when it comes to medications. To me, it means that those in the pharm industry will look to create better drugs for all of us. And that means a lot to me, as I am sure for others with Lupus and similar conditions.

What is it like when you awake from turning back into a human, and your clothes are all torn apart and there is blood everywhere?

I feel like that dude from the Lego Movie. "Honey, where's my paaannnntttss" ?

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The diagnosis actually kind of fell in my lap. 9 years ago, when I was pregnant with my daughter I had a bad sub-chorionic hemorrhage. I lost her twin and I almost lost her. When I got pregnant with my son 6 years ago, I asked my perinatologist to test me for a clotting disorder since I am of Italian descent, so I am more at risk of developing certain clotting disorders. Clotting disorders can cause the sub chorionic hemorrhage like the one I had with my daughter.

Well, my perinatologist decided to add a basic rheumatoid panel onto the test and my ANA was high (1:320 speckled). With that coming back positive they tested me for various autoimmune specific antibodies and I tested high positive for the ds DNA antibody. They then took a thorough history and I was diagnosed when I saw my first rheumatologist. My aunt had Lupus so it's in my family line and she passed away from it. It was a scary time.

Have you had your ANA tested? I had to google uveitis because I wanted to be sure I knew what it was. A lot of people with Lupus either test negative or their doctors wait to see a pattern of autoimmune activity. I know it can get frustrating. On average it takes 5 years for someone to get a Lupus diagnosis. I was in the minority in the speed I was diagnosed.

Welcome! What medications are you on?

They are in my proof but I'll list them out. I am on:

400mg of hydroxychloroquinine (Plaquenil) a day

20 mg of Methotrexate a week

1 mg of Folic Acid a day

15mg of Prednisone as needed for tapers

cyclobenzaprine (Flexeril) for muscle spasms.

I also take OTC Vitamin D supplements since I am extremely photosensitive and have chronic Vitamin D deficiency.

So do you have to lock yourself up every full moon or do you have more control than that?

LMAO. I have finally garnered enough control that I can roam free during the full moon. But you can't imagine what it was like before I could control my lupine powers.

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I haven't yet nor won't. Thank you for your support, I am glad your mom has been such a good example for you.

Hello fellow lupine. I only have episodic but a friend is in dire straights fighting for her life with systemic. She didn't take anything the doctor said as serious. Don't ignore the doctor, the results will most likely not be in your favor. :(

Also, you love naps? I love naps haha

I definitely don't and I hope your friend is doing a lot better now! As well as listening to her doctors.

As for naps, they are my mistress. I finished finals this week and I took a 4 hour nap after my chem final. It was glorious!

I've know three women with lupus (that I know of). Two of them were morbidly obese and the other was so thin that she had a sign on her refrigerator that randomly blinked the word EAT (so she would remember to eat). Is it hard to maintain a healthy weight when a person has lupus, and if so, why?

Lupus flares cause you to have anorexia. You don't want to eat because it hurts. During my worst flares, I dropped 20-30lbs from not being able to eat.

As for the obese ladies, steroids are usually the number one drug used to treat Lupus. Steroids fool around with your glucose metabolism so they may you ravenously hungry, even if you eat a huge dinner. It's like having a hunger you can't satiate. Gaining weight on steroids sucks, and continued steroid therapy makes it even harder to lose the weight because you are stuck in this "feed me" cycle.

Great AMA. I'm 36 white male with Lupus (very rare), Psoriatic Arthritis and Psoriasis. I've been on the exact medicines your on among many others but they seem to make the Psoriatic stuff worse. I have to choose joint pain or muscle pain basically. Methotrexate worked the best but I felt like I was hit by a bus the days I took it. I stopped basically all meds and my doctor is really irritated. I maintain by prednisone the days I wake up and can't walk. I love your attitude that many people have it worse. That's my philosophy too. Anyway just wanted to say thanks for getting the knowledge and awareness out there.

Thank you. Lupus is rare in men, but I have heard it is often worse in men than women. I am sorry that the methotrexate makes you feel so shitty and I don't blame you for weaning off everything. Sometimes the side effects are just not worth it. I agree with you that prednisone is perfect for those days that you struggle to even get out of bed.

I appreciate all your kind words and I wish you the best!

How much shorter is your life compared to normal person?

It used to be that 75% of Lupus patients died 25 years out from diagnosis, with most passing away in the first 10 years. I am not sure about the current stats but our life expectancy has definitely increased due to use of immunosuppressants like methotrexate, imuran and cell kept. As long as you live a healthy life you should be able to expect a normal life expectancy.

Can't a doctor prescribe something to help your energy level?

During the times that I have had anemia, I was given B12 shots in my butt which helped with energy level. Taking the Vitamin D supplement helps along with Fish Oil when I remember. I used to actively do yoga which made a huge difference but lately I haven't had the time for it.

Honestly, I drink so much coffee in the morning that I consider that my energy boost for the day.

Why have you stopped doing yoga? Did you feel a true difference when you practiced it?

I am in school full time finishing off my BS in Cell/Molecular Bio. I also have a husband and two kids at home. I had a really bad flare last year around this time that caused me to have seizures and I haven't fully been the same since, I tire more easily. I know these sound like excuses but it's been a rough year.

At the end of the day, I just want to get into my schlubby clothes and sit my butt on the couch. I have returning to yoga on my list of things to do because it made a great difference in my joints. I have chronic inflammation in my hip and knees and the yoga kept me limber. I just haven't had the motivation to make the time yet.

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Rayndaud's does blow the big one. I live in the South US so it only flares when I go home to NYC during Christmas time. Pleurisy is the most unimaginable pain, you are right. I felt like a fish trying to breath air through my gills when I had it.

Thank you for understanding and for the support. I am doing this AMA to help spread awareness. There are only about 1 million people in the world with this disease so most have never heard of it. The more I can share my story the better!

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I actually went up to Anchorage last year in May. It snowed the weekend I arrived and I was dying, having come from 90+ degree Georgia weather. Gloves and hats were my friends!

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It is, but Alaska, hands down, is the most beautiful state I have ever visited! And the food! I had Elk and halibut and reindeer when I was there. The Elk hamburger was the best hamburger I have ever eaten!

PS- 20+ hours of sunlight sucks for someone with lupus. I barely slept when I was there. I felt like Dracula trying to hide from the sun.

I just wanted to say I feel for you. I suffer from rheumatoid arthritis, and I have tried a serious amount of medications, many of the same you are on, or have been on. I found the same issue with that damn Plaquenil, all I found it good for, was giving me heartburn up to my ears, and nothing seemed to quell the burning. I've been on the methotrexate, both pill form, and injection, and I was on a max dose of that, and it didn't help at all. Ive been on Enbrel, and Humira, and a mess of other pills before that to no avail. Now, I am on a pill called Lefleunomide, or Arava, along with another biologic called Actemra, which has just been approved in Canada for subcutaneous injection, and should finally be available this June! That's the killer when it comes to cost, which runs me $2200 every 3 weeks. That and the pills on top of that, would really suck if I didn't have a drug plan that covers the cost 100% for all my meds. I'm glad to see you are doing well on the methotrexate, and hopefully, it keeps it up. If you ever want to chat, let me know, because it's nice to have someone to talk to, who is in the same boat, when the need arises. Have a better day! :)

I understand the frustration and I feel for you with RA. To me, it seems that there are so many drugs for RA but none of them are as effective as they should be. Your rotating cocktail schedule, to me, proves just that and I can't imagine how annoying that gets in the end.

I am happy you have great health insurance. I have pretty good coverage and it makes a big difference in being able to have access to different meds if one doesn't work.

Thank you for your words, and I will add you to my friend list! I hope you have a great day too!

Yea, it's commonplace for RA sufferers to end up switching medications every couple to few years. Most will see an improvement at the beginning, and then the med tends to have less effectiveness over time. I was on Humira for over a year, and then within a couple months it was like my body said screw you, I'm not having this stuff in here anymore. Next thing you know, I'm on to a different medication that doesn't work. It's certainly been a battle, and I'm sure you've seen the same trend when it comes to finding that medication that works for you. It can certainly be disheartening at times. My wife's dad suffers from RA, so I went in knowing a bit about it, but he's been able to control his with methotrexate for years now. I on the other hand, haven't been so lucky. Also, I forgot to mention, that I had a great aunt that passed away from complications related to Lupus. I only found out recently. I don't know how it affects different ethnicities, but she was Filipino, and apparently they have a higher risk of getting it. As for the RA, my grandma and mom think it runs on both sides of the families, but 60 years ago, nobody would have known much about it, so neither of them are too sure.

You are correct that it runs in different ethnicities at different rates. African Americans and Asians are more likely to get Lupus than caucasians. I am white but my grandfather was Sicilian. While doing genealogical research on where he was from in Sicily, it turns out the Spanish Moores held his town for like 700 years. So, I blame the Moorish blood on my Sicilian side for this disease, especially since other family members on that side had it and other autoimmune diseases.

I hope that you find something that works for you soon! I know it's frustrating and it was like my whole world opened up when I realized that methotrexate was working. I felt better and could accomplish more. I hope the same for you!

At first I was thinking this was Harry Potter speak for being a werewolf, it seems I am mistaken. Soz.

Sometimes I think it was better if I was a lycan. Especially and Underworld type lycan.

The name lupus comes from the fact that the typical malar rash in the days of yore looked like a rabid wolf bite.

Were your parents aware that they carried the genes for these diseases? I know a girl who's mother has Lupus and Arthritis, and had a child knowing that there was a very strong chance the kid would have it, too. Now she's 18, but her body is decaying as though she was 60 :(
Are you interested in having children, yourself?

I actually have two children. I was pregnant with my second when I was diagnosed. My husband and I made the decision for me to get a tubal and for him to get a vasectomy after my son was born because I didn't want anymore children. I worry everyday that my daughter would get it, especially since it is 90% more common in females than males. If i would do it differently I think I would have still had my children. I am just grateful I was 23 when I started because if I had to start haven them at 31, I don't think I would be having any.

When it comes to my parents, while my dad's aunt had it, it was never really talked about. They also didn't know exactly if it was genetic or even what it entailed so my parents wouldn't have even thought to take that into consideration when they got pregnant with me. I was their first.

My grandma and aunt both have lupus. It seems so hard to live with and keep up a typical lifestyle. I'm sure it's different for every person but just keep on keeping on my friend.

I definitely will and I hope the same for your grandma and aunt! All we have to do is live, even if it is slightly different from others!

My mother has lupus. What is something that you wish or want you kids to know about your disease that can make life easier for you?

I just want them to understand that I am not feeling well enough to play with them, etc, that I would give anything in the world to do stuff with them and it kills me that I can't. They are still young, at 8 and 5, so it's hard. I don't want them to think that it's because I rather not spend time with them or that I don't value them enough. I would move mountains for them.

Hello! I know little about lupus other than that it's hereditary. I'm irrationally scared for a friend whose family has a history of SLE. Are there any signs of early onset lupus in one's late teen years (bruises that refuse to heal, etc.) that could indicate lupus?

Thanks for doing this AMA! PS. How often do you get people referencing House?

Here are the common symptoms of lupus and here is the diagnostic criteria. To be diagnosed your friend has to meet at least 4/11 of the diagnostic criteria. Lupus usually strikes during a woman's childbearing years so being a teen and getting diagnosed is quite common.

I often get bruising but at this point I am not sure if it is because of the Lupus or the medications used to treat it. Since your friend has a family history I would suggest that she gets a check up with her pediatrician/GP. Make sure she lets him/her know about her concerns. Constant bruising can also be symptomatic of leukemia and other blood cancers so it's important she gets checked out soon.

And for the House references, it always cracks me up when I see people on reddit posting it. IRL, it's usually my husband and I joking around about it since we are huge House fans!

Have to ask. Are you still taking prednisone? I've been on it for like 2 years now. We were weening me off of it and I went down from 20 to 15 to 12.5 then 10.… got to 7.5 before all went to hell and all my symptoms came back worse than before. Just wanted to know how you're doing with it all and is it more stable or just a crapshoot

I haven't been on prednisone in a year. I was on it and IV prednisolone for my Lupus induced seizures and it wasn't working to control them. I was put on methotrexate during this time and my seizures stopped as well as my other symptoms. My body has gotten used to methotrexate so I have tapered up on my weekly dose, from 15 mg to 20 mg.

I would also fall in the taper crapshoot, from 30 mg to 10 mg I would be fine but once I hit 5 mg my symptoms would come back with a vengeance. I think that prednisone, in my experience, is great for short term bursts, but in the long term the side effects aren't worth it (bone thinning, weight gain, moon face, humpback, etc). There are other drugs that better control the symptoms, like methotrexate, imuran, etc that should be relied upon.

This is strange timing for Lupus day to be today. My mom actually was tested positive for Lupus about a week and a half ago. How did you figure out you had lupus? Also, any useful websites or info online that would help me better understand what my mom is going through?

I will be thinking about your mom! If you have any questions you can pm me.

Lupus Foundation of America is a great resource for those newly diagnosed. You can even join as a member and they will send you updates about research innovations etc.

Alliance for Lupus Reseach is another great organization. It was started by the Johnson family (as in Johnson & Johnson and owner of the NY Jets). They seem to be more pro-active in actual disease research than LFA.

If you are in the UK or Europe, here is England's Lupus organization.

As someone who has had Lupus for 18 years I did not know it was world Lupus Day so thanks! And also I'm on the the same list of meds but I also take Mycophenalate. Hoping to finally ween myself off of the prednisone!

Your welcome. May is Lupus awareness month with May 10th being World Lupus Day and May 16 being P.O.P. (Put on Purple) day! How are you doing on CellCept? Are the side effects bad?

I also hope you can wean off of prednisone. The side effects suck.

Do you exercise? I had a teacher who had lupus and told me joint pain leads most people to never exercise but she wouldn't have it and was a marathon runner.

Not as much as I should. I definitely felt better when I did. I know someone with lupus who is also a long distance runner and she has had minor flares since she started running. Exercise makes a huge difference in managing this disease.

Be well!!!

I've lost 2 aunt to some form of lupus, and we have several other family members with lupus so I know your struggle!

Thank you for your kind words and understanding. I am doing my best as that's all I can do.

I am also sorry for your family's loss. I know how hard that must have been on your family. <3

I saw a doctor for a couple years who is a lupus specialist, he was sure I had lupus! After years and years we finally thought I had a diagnosis, but it never showed up in my blood work. I had all the other symptoms though. I was diagnosed with juvenile arthritis when I was about 12 and then with raynaurds phenom but I still have no answer to what was causing my joints to swell once a month. I'm 34 and haven't really had a flare up in 10+ years, thankfully. I'd love to know what has caused me so much pain for so many years but each doctor I've seen has never been able to give me an answer, it sucks. I just want answers!

Just because Lupus isn't showing up in your bloodwork doesn't mean you don't have. I know of plenty of women who have negative serology but have 4+ other symptoms that meet the diagnostic criteria.

Juvenile arthritis is an auto-immune and it runs the risk of turning into RA and other auto-immune diseases. I do believe you have Lupus, especially if a specialist told you so. Too many rheumatologists rely on bloodwork alone and not symptoms and it can be frustrating. To me, that explains why you have never received an answer on what is wrong. I have had that issue when dealing with SED rate and Complement blood test that didn't "match" my symptoms.

I would say find another doctor. And I am so happy you have been flare free for so long. But if your joints are still swelling that is symptomatic of active lupus, so please stay on top of it! I wish you the best and keep me updated!

Does your username have anything to do with mrs. frizzle?

It's great to see that you have such a good sense of humor about the whole thing, and good on you for staying so positive!

Nope. It's a Snoop DoggSnoop Lion play on my first name. I had a friend who would call me that so I figured it was a good Reddit username.

Also wanted to add that Snoop's daughter has Lupus too. He does a lot of great stuff for the the Lupus community.

Thank you for this! My Rheumatologist can't seem to make up his mind if I have Lupus or RA. Question: Do you get more flares in your connective tissue than joints like I do? The doctor thinks I'm making it up, but its my ligaments and tendons that hurt more than the actual joint (he also says the constant low-grade fevers are all in my head as well). Thanks for bringing awareness to this poorly understood disease!

Has he brought up mixed connective tissue disease? It is my understanding that ligament and tendon issues are due to that. It is closely related to Lupus, with people eventually being diagnosed with Lupus down the line. Some people even have "Rupus" which is RA and Lupus because it seems like auto immunes always need a buddy.

What alarms me from your post is the fact that your doctor won't listen to you. Don't be afraid to get a second opinion. If you are in the US, you can apply to be seen at the Mayo Clinic. They are the end all and be all when it comes the Rheumatology diagnosis. Don't give up til you get the answers you need.

While I got diagnosed relatively quickly, when it comes to a Lupus diagnosis I have seen the struggle other people have endured and the struggle is real. Find a doctor who will listen, it makes all the difference in the world!

ETA: I wish you all the best! And keep me posted!

One of my most cherished internet friends has lupus. I read the topic title and immediately thought of her.

It was something that, living in America, always seemed difficult for her to deal with - as somebody who lives in the UK, the concept of (potentially) being clfaced with large medical bills seems very strange.

Where is it that you live (if you don't mind my asking) and how has the health service helped (or hindered) you while dealing with your health problems?

I live in Georgia now. My husband is retired from the US Army so we have been able to keep his health insurance which is a god send. I always have access to doctors and hospitals without the fear of medical bills that would put me in bankruptcy.

When I had my seizures last year, I did get a second opinion from doctor's in NYC (where I am from). My insurance gave me the flexibility to do that. If I was uninsured, it would be scary. Last year alone, I surpassed my catastrophic cap significantly. If I wasn't insured, I don't know where I would be now. My insurance is excellent though so it hasn't hindered me.

Who's your favorite character from jet force Gemini?

I don't know what that is but when I get my google-fu on I will get back to you!

My gf thinks that lupus is caused by fungus and suggests that you check out http://www.knowthecause.com/index.php/health-blog/newsletter/september-1st-2012/641-fungus-and-common-illnesses

Might be worth looking at....

Thank you for sharing that link. I have heard this, along with a yeast overgrowth in the intestinal tract causing countless other issues. I will definitely do more research on it. I take acidophilus to help treat the chronic yeast problem but sometimes it just doesn't work. I also use gentian violet.

Thanks for this AMA! I have psoriasis and i understand that the treatment IVIG or intravenously injecting pooled white blood cells hopefully to restart your own white blood cells was initially designed for Lupus and other more complicated auto-immune conditions. Have you tried that treatment?

I only know two woman on IVIG treatment who have Lupus, one's case was so severe she even went through a stem cell transplant. I don't know if it has become outdated or I am not sever enough to take it, but it has never been offered to me.

It worked for me with psoriasis and a relative who had Guillian-Barre. Granted i've not talked to anyone with Lupus about it at all, (thanks for the Ama btw) It always seemed to make more sense than using immunosuppresants, Instead of compromising the activity of your immune system, how about introducing enough smart new white blood cells to hopefully restart and teach the existing system how it's done.

You're welcome. It does make sense to replenish those white blood cells instead of knocking out your whole immune system. In my experience, all I have ever been offered is immunosppressants to treat this disease, from chemo to organ rejection drugs. You have made me curious now and I will be bringing it up to my rheumatologist in July!

What side effects do you experience from your meds?

With plaque nil, I get a lot of indigestion. But it's an antimalarial, so if I ever go to Africa i'll be safe. I got that going for me, which is nice.

Steroids are the absolute worst though. Constant hunger, insomnia and mood swings. I honestly haven't been on them since my seizures. I rather take a higher dose of methotrexate (chemo) than deal with that shit.

Methotrexate, in the beginning, gave me terrible nausea. I also started losing my hair. But I have been on it almost a year and take folic acid daily which helps counteract those side effects. Now, the day after I take it I kinda feel hung over.

Cyclobenzaprine puts me to sleep so I take it at night.

In the past I have also been on Lyrica, Neurontin, Naproxen and Meloxicam. I am glad I weaned off those drugs.

In case you're interested, you may want to try Protonix to counteract the stomach issues from the Plaquenil. I know someone for whom that combo has been quite effective.

I have been on a proton pump inhibitor due to a hiatal hernia. It definitely does help with GERD, which I have but isn't caused by lupus. It was caused by my babies being big at birth.

Does the plaquenil make a big difference, and how long did it take to start working? My mom has a lovely cocktail of autoimmune stuff herself (raynauds, scleroderma and hashimoto's thyroiditis) and has been on it for a few months but it doesn't seem to be doing anything. I know it takes a while, just wondering if it's worth the wait.

Also, do you have any family history of autoimmune things? We found out when my mom was diagnosed that my grandma also had some kind of skin thing in that category although no one remembers specifically what it was, and my cousin has raynauds too. So I have something to look forward to, hooray... Sounds like you have a good attitude about it though, which is half the battle. Sorry your body hates itself!

In all honestly, I don't think plaquenil does much. I have been on it since the beginning and I always had to supplement it with other medications, like steroids, nsaids and now methotrexate. But a lot of rheumatologists say it is the number 1 drug to combat lupus so I'll continute taking it. Her rheumatologist probably gave her the spiel that it takes time to work in your system until they supplement her with something else or move her off of it if the side effects are too bad.

And yes, I do have a family history of lupus. My dad's aunt had it and it developed into lupus nephritis. My dad's first cousin has been tested for it and while she isn't diagnosed, her symptoms match. She also has Crohn's and fibromyalgia. We know it's from my Sicilian side for sure.

And thank you, I do my best to live as normally as I can. I have two kids to be an example for so I do my best. There are times where I need to rest and baby myself, but by keeping myself active helps more than if I stayed in bed all day.

PS- I LOVE your user name! The kids and I are huge AT fans and Lumpy is my favorite! <3

How does having lupus affect your day to day? What are the things you have to watch for or worry about? Changes in sleep/eating habits?

I can't be out in the sun as much as I like. I love the beach and I am a former lifeguard so it sucks that I can't enjoy those things as often as I did when I was young. That is probably number 1 on my list of lupus affecting my life.

At this point, taking meds is old hat, so it isn't a big deal. When I started having the seizures, I was sure I was going to die and though the fear has lessened, I worry I will have more seizures. I also worry about my kidney function since my aunt had lupus severe enough to put her on dialysis.

I love to sleep so I make sure to get at least 8 hours a night. While I have heard good things about doing a gluten-free diet to curb inflammation, I love pasta and bread too much to even try it. Same goes for the nightshade diet

What the fuck is lupus?

It's when your fucking immune system decides your organs are foreign so it bombard them with auto antibodies. It can cause fucking irreparable organ damage and body wide inflammation. Thanks for fucking asking ;)

Maybe came across as a dick there, but I thought it was some form of imaginary disease, like mono. Stick through it man!

No, I didn't think you came across as a dick. I just figured it gave me a chance to use fuck in a response. But for the record, mono isn't imaginary. I had it and it sucked the big one.

All my experience of mono comes from Waynes World, where he realised he didn't have mono. It just turned out he was really bored.

I haven't watched that movie in years, now I remember. And it's all good!

Hi thanks for doing this. I'm always interested to see how people manage with Rheum conditions. Do you still do everything you want to do, e.g. exercise, travelling? Do you have any joint pain and if so how do you deal with that?

Thanks!

I do still get to travel, I just wish I had more of the funds to do so. I don't go to the beach nearly as much as I want but I do go sometimes. I haven't exercised within the past year because I was in a bad flare for the first 6 months out of it. Now I am doing ok, but I have gotten complacent I guess. It is on my to-do list.

When it comes to joint pain, I get steroid shots in my hips. I also occasionally get rx'd opiate pain killers if I am in especially painful flare. I don't have a standing rx though. Did pain management and the doc got busted as a pill mill doc so that went out the window. I realized I did better when I wasn't shoving norco down my throat throughout the day. My tolerance was better.

Have you tried Kefir?

No I haven't. What does it taste like because even though I like alcohol, I have been leary of fermented yogurt because it just sounds odd. But I am usually up to try almost anything so if you tell me it's good, I will try it.

It's really good. I like the blueberry and it's especially good if you mix it in a bowl with some granola.

I will definitely try it then! I love granola and berries in almond milk.

It tastes a bit sour but you may like it. I certainly do. The reason I asked was, since Kefir helps regulation of gut flora it has a positive effect on immune system and there is anecdotal evidence that it helps with lupus too.

I love greek yogurt so if the sourness is similar to that I would definitely like it. It is important for those with lupus to have a good immune system which isn't the same attitude most doctors have. Thanks for the heads up.

When did you start noticing something wasn't right? How long until doctors diagnosed you? What was your general reaction to finding out you have lupus?

I had mono as a teen and it was so severe I need steroids to combat the inflammation in my tonsils. Since that point, I have never felt normal. When I was about 20, I noticed joint pain and burning in my muscles. When I brought it up to my GP he told me I was fat (I was about 200 lbs then) and depressed and that it wasn't lupus.

When I was pregnant with my son I had already long given up finding answers to my fatigue and joint pain, so I feel like the diagnosis fell into my lap. I was scared shitless because while I knew my aunt had it and was on dialysis for it, I had no clue what it was or what it meant in prognosis. Especially since I was pregnant with my second child at the time.

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They are finally getting some answers to that question. it seems like there is a genetic component, mainly a mutation on the 2nd chromosome in Lupus sufferers. There was a great article about it in the NY times.

Direct relatives, like parents, siblings and children have a 6x greater chance of developing Lupus than those who don't have a relative with it.

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Every year I go and get a depth of field test done and my eyes dilated. While my vision has gotten worse, my ophthalmologist assures me that it isn't due to Lupus. He has only seen one case of plaquenil related eye issues in all of his years of being a doctor so I trust him.

Also, I am not on the highest dose of plaquenil so there is a buffer there, so to speak.

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Being that I just submitted this AMA and it's a Saturday I figured it would be a slow start.

I am also waiting for the Dr. House references, which is fine since because that's one of my favorite shows of all time.

They always do a really good job of explaining Lupus on that show. I'm fairly certain the famous running joke is "it's always Lupus."

Lol! Of course it's always Lupus, and never Wegner's Granuloma or Sarcoidosis.