Lupus Symptoms

Just under the wire here, another post before the end of Lupus Awareness Month.

 

Here's a list of the 11 common lupus SLE symptoms, developed by the American College of Rheumatology (ACR). Doctors for a long time have agreed that if you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.

1. Malar rash – appears over the cheeks and nose, often in the shape of a butterfly
2. Discoid rash – red, raised, disk-shaped patches
3. Photosensitivity – a reaction to sun or light that causes or worsens a skin rash
4. Oral ulcers – sores in the mouth
5. Arthritis – joint pain and swelling of two or more joints
6. Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart  (pericarditis). This causes chest pain which worsens with deep breathing.
7. Kidney disorder – persistent protein or cellular casts in the urine (you would see bubbles in your urine)
8. Neurological disorder – seizures or psychosis
9. Blood disorder (found by lab tests)– anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
10. Immunologic disorder (found by lab tests)– abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
11. Abnormal antinuclear antibody (ANA) (a lab test)
    
     I have experienced #1, 3, 5, 6, 7, 8, 9, 10, 11 out of this list. But remember you only need to experience 4 for it to build a strong case for lupus.
    
    

Other symptoms that do not appear among the ACR criteria but are recognized as lupus symptoms:

1. fever (over 100° F)
2. extreme fatigue
3. hair loss
4. fingers turning white and/or blue when cold (Raynaud’s phenomenon)
   
   I have experienced all 4 of these.

More symptoms that I experienced that are not on either of these lists but I believe were related to/ caused by the lupus:

1. brain fog (confusion)
2. unexplained weight loss
3. congestive heart failure
4. high blood pressure
5. digestive problems (stomach just shuts down)
6. weakness, especially upper body
7. irregularities in menstrual cycle
8. neuropathy (nerve pain)
9. anxiety
10. depression
11. secondary Sjogrens (lab test/ dry eyes and mouth) (It's not all that unusual to have more than one autoimmune disorder)
12. fibromyalgia

Obviously, this is my list so I've experienced all 8 of these as well. 

Part of the reason I experienced so many symptoms was that my illness went undiagnosed for a couple years, then I was not treated for months. It's really important to get diagnosed as early as possible. Then once I got to see a doctor, I resisted the idea of going on prednisone for 6-7 months. Finally I got sick enough I realized I had no other option. It isn't necessary to go through all I went through. It wasn't even necessary for me to go through all that.

Now that I've overwhelmed you with all the possible things that could go wrong, let me mention one "symptom" of lupus that is not that common anymore (it used to be, before we had drugs to treat it):
Death.

I haven't experienced that one yet (came close, but no). And that's because there are treatments available for lupus. Only 50-60 years ago, lupus was a death sentence. Today, for most people, it is not, as long as you monitor the disease and do what you need to do to stay healthy.

There are 2 ways to go once you get diagnosed, and you can do both at once:
- regular medicine (lab tests and medications- regular lab testing is important!)
- alternative medicine (dietary changes and healing modalities)

I'll talk about these in another post.

The important thing is, if you are sick, find out what you've got so you can get a plan of action together.

Think you might have lupus? Here's a quiz from the Lupus Foundation of America
http://www.lupus.org/newsite/pages/lupusChecklist.aspx

Carla Ulbrich

http://www.thesingingpatient.com
http://www.facebook.com/TheSingingPatient
http://www.twitter.com/singingpatient

Come Back When You're Sicker

A few months ago, I was sitting outside in the sun. Upon coming inside my
hands started burning as though I had stuck them in the snow- it was around 60 degrees that day. Soon after I developed a rash on my hand. Then intense pressure in my fingernails which lead to them turning purple and then brown. My hands started aching and feeling weak. They progressively got worse. Now I have days that all I can do is cry bc of he pain and weakness in my hands and arms.

My blood work came back positive for ANA and SS-B but negative for SS-A. I have been waiting to get in with a rheumatologist for almost two months. After a very difficult day last week with my hands and arms, my primary care physician put in a referral to get an EMG and meet with a neurologist in a week.

I am really losing hope and feel like I am losing my mind. 12 yrs ago I was diagnosed with anticardiolipin antibody syndrome but once I got pregnant with my second child I was told it was a misdiagnosis. Does any of this sound familiar or can you point me in the right direction? I just want answer to what is wrong with me.


Hi there-
Thanks for writing in.

I'm so sorry about the long wait for the specialist. I have been there, and it's really frustrating. Sometimes I think they make us wait so our symptoms can get worse, which makes us easier to diagnose. Doctors have said to patients with "mild" symptoms "Come back when you're sicker." If it's bad enough, it'll be so obvious even a caveman can diagnose it.

It sounds like you at least have Raynaud's (the discolored and painful fingernails when exposed to cold),  possibly lupus SLE (the other tests and symptoms do sound autoimmune). Plus you have a history of autoimmune activity. Perhaps the anticardiolipin antibody syndrome was real- not a misdiagnosis- and it went into remission with the pregnancy. 

I'm only guessing. I can't really diagnose anyone over the internet (especially since I'm not a doctor or even a nurse, just a fellow patient, and a holistic health coach).

My real "expertise" is that I have had lupus SLE, Raynaud's, Fibromyalgia, and Sjogrens, for 20 years. So those are the illnesses I am most familiar with. They are all autoimmune, and it's very common for someone with an autoimmune disease to find out they have another autoimmune disease. Or 2. Or 3. They are generally all treated the same way, with immune suppressants, which will get the symptoms under control.

Raynaud's is not a big issue for me, in that I just don't let my hands get cold, then I don't have any symptoms. If they do get cold and they hurt, I run them under warm water for a bit. But I'm not sure my Raynaud's is a severe case. My bigger problem has been the lupus. Everyone is different.

Over the years I've found some natural medicine that has helped me to be drug-free and in remission. But I have used and will use medications if things get out of control.

If things get bad enough for you (hopelessness/ unbearable pain), just go to the ER, or to an Urgent Care facility, and try to get some answers and some relief. I was diagnosed with lupus at an Urgent care center after spending the night in the ER because I was in so much pain. Maybe you can at least get some kind of medication that will stop the pain.

Not knowing what's wrong is a tough place to be.
As is being in pain. So if you need some help or relief before your appointment finally rolls around, go ahead and do that for yourself rather than just suffering while you wait.

I wish you speedy and compassionate care-
Carla

Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer

http://www.thesingingpatient.com
http://www.facebook.com/TheSingingPatient
http://www.twitter.com/singingpatient
http://www.youtube.com/user/carlaulbrich
http://www.linkedin.com/in/carlaulbrich
http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

How Is Lupus Diagnosed?

Lupus is diagnosed using a combination of symptoms and lab tests. Your medical history and that of your family's may also be taken into account. There is no one specific "lupus test." Here are some classic symptoms:

• extreme fatigue (tiredness)
• headaches
• painful or swollen joints
• fever
• anemia (low numbers of red blood cells or hemoglobin, or low total blood volume)
• swelling (edema) in feet, legs, hands, and/or around eyes
• pain in chest on deep breathing (pleurisy)
• butterfly-shaped rash across cheeks and nose
• sun- or light-sensitivity (photosensitivity)
• hair loss
• abnormal blood clotting
• unexplained weight loss
• fingers turning white and/or blue when cold (Raynaud’s phenomenon)
• mouth or nose ulcers

 It used to be if you had 4 of the classic symptoms, they would diagnose you with lupus. But these days they seem to be a bit more hesitant to diagnose people with lupus. Don't know why.

Lab tests run when looking for lupus:

• complete blood count (CBC)
• urine test (for kidney involvement)

for autoimmune activity:

• Antinuclear antibodies (ANA)
• Antibodies to double-stranded DNA (anti-dsDNA)
• Antibodies to phospholipids (aPLs)
• Antibodies to Ro/SS-A and La/SS-B
• Antibodies to Sm
• Antibodies to RNP

for inflammation:

• Complement
• C-reactive protein (CRP)
• Erythrocyte sedimentation rate (ESR or "sed" rate) 

other:

• blood clotting time tests
• tissue biopsies (usually skin or kidney)

For more detailed info on these tests, go to http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2242&zoneid=524

Unfortunately, lupus can look very different from one person to another, and also from month to month in the same person. The immune system is attacking the body's healthy tissues, and that could be any tissue. Heart, lungs, kidneys, brain, skin, you name it.

And for this reason it's not uncommon for someone with lupus to go to doctors for 2-5 years before finally getting diagnosed. I was first diagnosed with lung disease (um, no), then bronchitis (what? I wasn't even coughing- there was no phlegm! I've had bronchitis, I know bronchitis, and you sir are no bronchitis!)- the only helpful part about that was they threw antibiotics at me that made me far worse, and therefore easier to diagnose.

The next guess was Rhuematoid arthritis (getting warmer...), and finally, after a night in the ER and a desperate plea to God to just get me a diagnosis, I got a doctor the next day who took enough time with me to get the whole picture, and she diagnosed me. By that time I was so sick, it was easy to diagnose me (once someone listened to me for more than 5 seconds) because I had every single symptom and the horrible lab results. At that point it was so obvious even a caveman could do it...

For this reason, and because our brains and memories are not at their best when we're under attack, I believe it's very important that we keep our own symptom journal when we are actively ill, in order to help the doctors put it all together. It could greatly shorten the amount of time you spend in the waiting room, with no answers and nobody but Judge Judy to keep you company.

Well wishes-
Carla

Prednisone 2: Importance of weaning off meds carefully

There's so much to say about Prednisone I couldn't fit it all in one post.
So here's another.

Did you ever notice that when you get a 6-Day pack of prednisone (or cortisone, same idea), you start with 6 pills a day then 5, then 4, then 3, then 2, then 1? There's a reason for that. Corticosteroids like prednisone and cortisone replace the hormones that run your vital organs. And there's a lag time between your stopping the drug and your body restarting making that hormone on its own. So you MUST taper off prednisone. If you stop taking it suddenly, you can end up feeling really awful.

Prednisone works by suppressing your immune system. So if you have a horrible poison ivy rash (or a rash from an allergic reaction to oh let's say a drug http://lupusandhumor.blogspot.com/2013/02/prednisone-vs-killer-drug-reaction.html ), that's your immune system creating that rash. And by suppressing your immune system, it gets rid of the very uncomfortable symptoms.

When you are using prednisone to control an autoimmune disease, you are on prednisone for much longer than 6 days.

I never wanted to go on prednisone for lupus in the first place because while I was waiting for my first rheumatologist appointment (and prescription) I read about all the horrible long-term and short-term side effects. But I was literally dying and prednisone saved me. And once I was back on my feet and going to support groups, and meeting people who were obese because of long-term prednisone, or getting joints replaced because of prednisone, I wanted to get off the prednisone. Plus I couldn't sleep and I was gaining weight like mad. I gained 10 pounds in just the first week.

The doctors want to wean you off prednisone if possible, because of all the dangerous long-term side effects, but it has to be balanced with controlling the lupus (or other autoimmune disease). Prednisone is not a cure; it's just basically calming down the immune system. If you come off of it too quickly, or, God forbid, just stop taking it all together, your disease can come back full force. (This is even true of blood pressure meds. if you stop taking them suddenly you can end up with "rebound" high blood pressure). The answer is almost always to wean off the meds gradually.

When my doctor first instructed me to lower my prednisone doseage, we went from 40 mg to 30mg in one swoop. Wow i felt like crap. I was exhausted and achy and felt like I had the flu for 3-4 days. I realized it was not the flu, or lupus, but prednisone withdrawal. So from then on, if she said to go from 30 to 25 I'd go from 30 to like 29 for a couple days, then 28 for a couple days, etc. (I just cut off gradually bigger slivers off my pills each day until it got to the "cutline" down the middle). I didn't want to spend 3 days in bed from prednisone withdrawal every time we cut the dose.

Prednisone can be cut with a pill cutter (get one at a drug store for a couple bucks). Some pills (like my blood pressure med that I'm finally off of) cannot be cut, because they are coated and are slow-release meds, so you have to get a new prescription for a lower dose.

One more story, this one about my aunt. My Aunt Pat had brain cancer. They gave her gamma "knife" radiation. She had had a stroke and lost the use of her left hand, just like I did.  So they put her on prednisone to hold down the swelling in her brain. Aunt Pat is the person who inspired me to play guitar when I was little. So she was just as devastated as I was to lose the use of her left hand. She was slowly regaining it and making good progress.

Then she was getting annoyed at the insomnia and decided to cut the prednisone in half. From 40 to 20. In one day, poof! Just decided that on her own. That night she had a long seizure and ended up in the hospital, having lost all the progress she had made. Doctors cleared her of the cancer but she died anyway a month or so later. I believe she died of hopelessness. There were other factors in her life that were troubling her, besides the huge setback from the seizure, but I've always felt guilty for not insisting she go take that other prednisone pill when she told me she had decided to cut the dose herself. She might still be around, and playing guitar.

So I'm telling you now. Wean off your meds slowly and carefully, and keep monitoring your symptoms and get regular blood tests while you do so. Please don't ever stop suddenly. I realize people are going to do what they're going to do, but at least now you know the consequences going in.

There are other drugs for lupus besides prednisone. Prednisone is just the cheapest, fastest, oldest and most commonly used treatment for lupus. I will discuss those other drugs in another post. And treatments that involve no drugs.

Cheers-
Carla

Carla Ulbrich
The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
www.thesingingpatient.com
www.facebook.com/TheSingingPatient

Famous People with Lupus

I recently posted an infographic on lupus that listed 6 celebrities with lupus.
http://lupusandhumor.blogspot.com/2013/05/what-is-lupus-what-are-lupus-symptoms.html 
I didn't actually create this infographic (because I haven't figured out how to do that), so there are a few things I would change on it if I could.

The list of celebrities on the infographic is:

• Michael Jackson
• Seal
• Nick Cannon
• Lady Gaga
• Tim Raines (baseball player)
• Millie the Dog (Bush I's dog)

I don't know where the creator got the confirmation that Michael Jackson had lupus, although I do remember some hubbub and speculation about that after his death, including from Deepak Choprah. Michael Jackson never admitted to it.

Seal has discoid lupus, the kind of lupus that affects only the skin, not internal organs.

Nick Cannon, when interviewed on TV (I was watching it live), did not really commit to the word lupus. He said he had something "lupus-like." (I can relate. I didn't want to use the "L" word in reference to myself, either. Kinda still don't want to). He has since been more open about his diagnosis and he and I handle our health in a very similar fashion: http://www.ebony.com/wellness-empowerment/living-with-lupus#axzz2UpksIB6a

Lady Gaga said she tested positive for "borderline lupus." None of us who know about lupus have ever heard of that term. But at least she's a big name and owning it. Sort of.

Clearly, not all these celebrities with lupus want people to know about it.  Some say Anna Nicole Smith had it, but she never admitted it. And I'm pretty sure Millie the dog didn't write that book herself. I suspect she had a ghost writer and maybe didn't even give permission for that tell-all book to be published.
 

Back in 2007, I wrote a post about how we needed a celebrity to "admit" (as if it were shameful) to having lupus. I feel like we need a spokesperson to get the illness into the spotlight so that it is taken more seriously and diagnosed more quickly.

In 2007, there weren't really any celebrities actually publicly saying they had lupus. There has been some progress since this original post, where I discuss why people are so hesitant to admit to the diagnosis: http://lupusandhumor.blogspot.com/2007/11/we-need-celebrity-to-admit-to-having.html . Then, I gave a longer list of people, but with fewer actual celebrities- more like celebrities whose relatives had lupus:

• Flannery O'Connor, writer, died of lupus in 1964.
• Rapper/ Music Producer J Dilla/Jay Dee died of lupus in Feb 2006
• Sharon Stone's sister
• James Garner's (the Rockford Files) daughter (not Jennifer Garner). 
• Anna Nicole Smith? (not confirmed)
• Michael Jackson (probably)
• Mary McDonough, "Erin" from "The Waltons." 
• Millie the dog
• Seal: discoid (skin) lupus 
• Richard Dreyfuss' first wife
• Mercedes Yvette, runner up on season 2 of America's Top Model
• Backstreet Boy Howie D's sister, Caroline, died from lupus
• Wayne Newton's sister-in-law
• American Idol contestant (2007) Leslie Hunt, who made it to the top 20 finalists. 
• Dani Miura, Actress, To Catch a Predator

I get why people don't want to talk about their illness openly. You get drama, baggage, dumb questions and stupid comments. And if you're trying to have a career as an entertainer, people would rather hire someone who is healthy and reliable (and insurable).

But since that time, there has been one celebrity who has been very honest about her diagnosis. Toni Braxton has openly talked about her struggles with lupus. She belongs at the top of the "celebrities with lupus" section, because she has been very open about her illness, and that is risky for someone who is still actively pursuing a career in entertainment. Cheers and thank you to Toni for her courage during May, Lupus Awareness Month.

Carla Ulbrich
The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
www.thesingingpatient.com
www.youtube.com/user/carlaulbrich - funny songs
http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"  
 

Treatments for Lupus: Prednisone

When I was diagnosed with lupus by a mainstream doctor, and then sent to a specialist (rheumatologist), I was given two choices: take prednisone or get cussed out. I didn't know about the cussing out option until I went for my second appointment and hadn't taken the prednisone. The thing is, I had read about all the side effects of prednisone and to me it sounded worse than lupus.

But here's what I eventually learned (the hard way): if you have systemic lupus erythematosus (a.k.a. SLE, lupus, lupus SLE, systemic lupus, or lupus erythematosus, or even the misspelling "lupis")....where was I? Oh yes, if you have lupus, it's not going to just go away by itself if you just wait it out, like a bad cold or bronchitis. I tried that. I got very very sick, down to 80 pounds. Lost most of my hair, kidneys failing, too weak to get out of a chair, constant pain. I would have died if I hadn't finally decided to get on some medication.

The first thing I did after being diagnosed was go to the library (this was 1993, pre-internet) and look up "lupus" in the encyclopedia. It said that people who were diagnosed with lupus usually died within 5 years of being diagnosed. This was very old information, because it was obviously written before they found out they could control lupus with drugs. I did not know it was old information at the time.

The next year I met a woman who was one of the first people to be given prednisone for lupus. They didn't know what dose to give her, so they started with 250mg. That is not a typo. Seriously. Can you imagine? I go bonkers on 40 mg. She found herself at a dinner party one night and before she realized what she was doing, she pulled the salad serving bowl in front of her and started eating out of it with her hands.

I did eventually go on prednisone. The pattern has been this: I take prednisone for about 9-10 months. And then I've been able to wean off it. Then 4-8 years later, the lupus goes bonkers again and I go back on the prednisone. Repeat.

Now when websites and doctors talk about lupus, they say it goes in cycles of "flares," rather than saying you'll be dead in 5 years. I attribute this change to the use of medications to quiet the disease. And I attribute the cycle of flares to the coming off the drugs and going back on them. Which is why some doctors try to keep patients on a "maintenance" dose of prednisone (or some other drug), in order to prevent future flares.

I rely on prednisone and it works for me but I hate the side effects and it's dangerous to be on it long-term. So I have searched high and low, near and far for other more natural options to build up my health and quiet the disease.

I've done acupuncture, chi gung, bodytalk (energy medicine), chelation therapy, chiropractic, lymphatic massage, regular massage, physical therapy, movement therapy, talk therapy, life coaches, psychiatry, got all my metal dental fillings removed and replaced, became self-employed and pursued my dreams (yes happiness affects your health), cut toxic people from my life, and changed my diet.

Out of everything I tried, the diet change (cutting out gluten, dairy, nutrasweet and MSG) and chi gung actually made all my lab tests straighten out, and I got the first negative ANA test I've ever had since 1993. And they basically cost nothing.

My last lupus flare was in 2006. I went on 5-6 drugs (including prednisone). I was able to wean off most of them within a year, except for the blood pressure drug, which I finally weaned off of just this past month. I feel like I'm in pretty good control of my heath now, because for me the diet makes such a huge difference. I have several big motivators to stay on that diet: not wanting to suffer from lupus, not wanting to suffer from prednisone, and not wanting to limited in what I can do physically.

I don't really care if a doctor cusses me out. That's not a motivator for me. In fact, it makes me that much less likely to "comply."

But now, because I have experienced the consequences of taking and not taking any medication while lupus is chewing up my organs, I am rather open to the idea of pharmaceutical intervention. If I ever have another lupus flare, yes, I will take prednisone (and ask people not to take my picture while I have a moon face). It's cheap, it works for me, and it has saved my life 3 times.

Prednisone was the first effective treatment for systemic lupus. Before that there was no hope. Just start planning your funeral. So, although it makes me batty, and it tastes like Ajax (I've accidentlaly bitten a pill more than once), I'm grateful for this drug. There are other medications out there for lupus now, as well as effective non-drug treatments, and I will talk about them in another post.

Meanwhile, here's a song I wrote about my love/hate relationship with prednisone.



From the CD



Carla
Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
www.facebook.com/TheSingingPatient
www.youtube.com/user/carlaulbrich - more videos

Dancing My Butt Off

People have been asking me about my weight loss "secret." No, I am not taking phen phen. I'm taking tap dance lessons. I don't know how good I am yet at the shuffle ball change but I've certainly had a shuffle butt change. My husband appreciates the change, but I'm not sure how my next door neighbors are enjoying the tap dancing...

When I watch shows like this Biggest Loser (actually I don't watch that...) or Celebrity Fit Club (is that still on?)... anyway, on those weight loss TV reality shows, the contestants are often doing long hikes or pushing around huge tires, or literally dragging around a ball and chain like an old school prisoner. They lose weight very fast and it makes for great TV. But like most "reality" TV, it's not realistic.

Does anyone really think once the show is over that these folks are going to buy a huge tire and push it around the yard, or get a ball and chain and run around the public park with it? I always thought the time would be better spent helping them find an exercise that suits them and that they enjoy and will stick with. There are so many ways to get in shape, and none of it has to be drudgery. Why not let them try all kinds of sports and activities, like tennis, running, hiking, yoga, line dancing, aerobic dancing, basketball- or even just ask them what they liked to do physically when they were kids?

When I had a stroke, kidney failure and congestive heart failure in 2002, my feet and legs were swollen, filled with water. I couldn't wear shoes. I couldn't even wear jeans, because by the end of the day my ankles would swell up so big that the one time I wore jeans I had to literally cut them off of my because my ankles were so big.

My legs were weak and useless. So I swam. My arms were strong and I always loved swimming. A first I just got in and hung on to the wall and kicked. And I walked very short distances. I mean like to the stop sign and back, like 1/10 mile at first. But all along, while I made these tiny steps of progress, my dream and my promise to myself was that when I got better, I would learn to tap dance. I have always loved aerobic dance and I had several years of ballet and one year of tap when I was a kid.

Tap dance was on my bucket list. It took a while, but I'm finally doing it. I had to get fit first, so I started with Richard Simmons videos. In fact, I started with doing just one song on a Richard Simmons video. (Here's my blog post from 2 years ago when I met Richard Simmons and attended his aerobics class http://lupusandhumor.blogspot.com/2011_03_30_archive.html ).

Eventually, the Richard video was too easy and I found a line dance video that was harder. Finally I was fit enough to go get some tap lessons. I'm not really a natural. It has taken me 2 months to learn to do a pirouette without falling over. But when I get decent at it, I'll post you a video right here of me tap dancing.

So I don't really watch the scale. Once every week or 2 I step on it to make sure I haven't been overeating or under-dancing. But I've dropped 2 sizes without really trying and I'm stronger and I'm learning a skill- a fun skill.

What does fun exercise look like for you? Dance? Polo? Gymnastics? Hiking? Biking? Ping Pong?

Carla
P.S. Here's a song from a time I lost TOO much weight. But not from exercising. From being sick, then taking diuretics (for my kidneys) while on a strict diet.  

From the CD

Carla Ulbrich

The Singing Patient:
www.youtube.com/user/carlaulbrich

Is Lupus Contagious?

May is Lupus Awareness Month.
I'm writing a series of posts this month in an effort to answer some of the most commonly asked questions about lupus:

"Is lupus genetic?" (already posted: http://lupusandhumor.blogspot.com/2013/05/is-lupus-genetic.html )
"What is Lupus?" (http://lupusandhumor.blogspot.com/2013/05/what-is-lupus-what-are-lupus-symptoms.html )
"How is Lupus Diagnosed?"
"What are the signs of lupus?"
"Is there a lupus blood test?"
"What causes lupus?"
"Is there a lupus diet?"
"Is there a lupus cure now, or on the horizon?"
"What are the available lupus treatments?"
"Why did this happen to me?"
"Who gets lupus?"
"Are there any celebrities with lupus?"

and today's topic:
"Is Lupus Contagious?"

(If you have a topic or question you'd like me to write about this month regarding lupus that isn't on this list, please put it in the comment section and I'll do my best to write something helpful and informative).

I could make today's post very short:
Is lupus contagious? No.

If you don't believe me, then ask Dr. Yazdany:
http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnclinical.aspx?articleid=4520

By answering "Is lupus contagious?" in depth, I'd be getting into the "what causes lupus?" topic.
According to the book The Autoimmune Epidemic (not a light read but a well-researched one), lupus, and autoimmune disease in general, has increased 300% in the last few decades. But only in industrialized nations. Not in the "poorer" countries that don't have our lifestyles. Yes, autoimmune disease is becoming a bigger and bigger problem. But it is not contagious.

Doctors are coming to believe it's a combination of genetic tendency and enviromental factors that create autoimmune diseases.

"Is it contagious?" is my least favorite question to be asked, because I feel like a leper when people ask me that. Here are the top 10 things I found most annoying to be asked, especially when I was first diagnosed:




From the book



See you on the next post. And please post in the comments section any questions (or annoying things people say) that I forgot to mention. Or anything else you'd like to add.

Well wishes!
Carla

Carla Ulbrich

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
www.facebook.com/TheSingingPatient
www.youtube.com/user/carlaulbrich

What is Lupus?

Found this great infographic to share with you. May is lupus awareness month, and I have been planning to write a series of posts addressing the most commonly asked questions about lupus "What is lupus?" "What are the symptoms of lupus?" "Is lupus genetic?" "Is lupus contagious?" etc... Well, this infographic answers quite a few of the most common questions. But not all of them, so I still have something to write about. Meanwhile, here's a quick guide to lupus for those whose only knowledge of lupus is that "it's never lupus."

Lupus Infographic infographic by manro. 

They need to work Toni Braxton into the "celebrities" section, because she has been very open about her lupus, and that is risky for someone who is still actively pursuing a career in entertainment.

What else would you want to be included on this infographic? 

Carla Ulbrich
PS Just learned that there is a new updated infographic from these same folkswith lots of new info on it:
http://www.achieveclinical.com/news/lupus-awareness-month-purple/

The Singing Patient: Author, Health Speaker, Humorous Songwriter and Entertainer
http://www.youtube.com/user/carlaulbrich - funny medical songs

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"
 

Defending the lupus diagnosis

Hi Carla,

I was diagnosed with Lupus 21 years ago. I understood from that rheumatologist that I had tested positive for ANA.  Now I have moved and am seeing a new rheumy.  She ran tests and my ANA was negative, so she now says I don't have lupus.  I had many positive ANA test results over the years. (Unfortunately I tried to get old records and was told they are not available.) Now the doc says I have Sjogren's. I had the lip biopsy done years ago it was negative, although I do have a dry mouth and teary eyes. I don't dispute that I could have Sjogren's but not in place of Lupus! Isn't just possible I am not flaring or do you have a positive ANA at all times?  The new rheumy won't budge on this, even though 2 previous rheumies treated me for lupus!
Any thoughts on this?

Hi -

Thanks for writing in. This sounds very frustrating, and you are not alone. I've been hearing from so many people over the last few years who have practically every symptom of lupus but can't get any doctor to utter the word "lupus." I'm starting to develop a conspiracy theory over this. It frustrates me on behalf of everyone who is told they don't have lupus when just 5 years ago they would have been told they definitely do.

Yes you could absolutely have both Sjogren's *and* lupus. It is very common for people with an autoimmune disease to be diagnosed with 2 or 3 or even more autoimmune diseases. I've been diagnosed with lupus (SLE), Raynaud's, Sjogren's (all 3 are autoimmune) and fibromyalgia. In my case, they call the Sjogren's "seecondary Sjogren's" which either means it was caused by the lupus or is overshadowed by the lupus (IOW the lupus is the bigger problem in my case).

No one has ever denied my having lupus, but I have definitely had to defend it every time I move and get a new set of doctors. Luckily (ha!) for me, when my lupus flares up, I get every symptom in the book and my ANA goes off the charts and my kidneys start to fail. So the same people who first came in and said to me "WHO TOLD YOU YOU HAVE LUPUS?" like I was lying to them- why would I want to lie about having lupus? - those same people then march in after the tests come back and announce to me "You have lupus," as if they discovered it themselves and are some kind of medical genius. So annoying. So, I kinda get it, how frustrating it is.

Now as to the ANA test. That has NEVER been THE "lupus test." You can have negative ANA and have lupus. You can have positive ANA and NOT have lupus. You'll see on this page from the Lupus Foundation of America (great organization by the way, focused on support and education of lupus patients) that "lab tests alone cannot give a definite "yes" or "no" answer." http://www.lupus.org/webmodules/webarticlesnet/templates/new_learndiagnosing.aspx?articleid=2240&zoneid=524

Similarly, the Alliance for Lupus Research (another great organization, focused on lupus research) says that "no single test can be used to diagnose lupus" (http://www.lupusresearch.org/lupus/what-is.html ).

So anyone who is telling you that you MUST have positive ANA to be diagnosed is misinformed or is looking for a reason to deny you the lupus diagnosis. (This is where I start feeling like a conspiracy theorist- why would they want to deny a patient the correct diagnosis? I mean how do you get correct treatment and education if you don't know what you have? Why?

I wrote a blog post on this topic 2 years ago, comparing the 2 diseases (Sjogren's and Lupus) and sharing my conspiracy theories. I just re-read it and it says everything I would say to you if we were sitting across the table chatting (or ranting).  http://lupusandhumor.blogspot.com/2011_09_01_archive.html

It's my most popular blog post, and that makes me sad.

Meanwhile, Know that a lot of the treatment (immune suppressants) overlap so the treatment may not be all that different.

And also know that the alternative medicine that helps with one autoimmune disease will probably also help the other. (Check out this article from Dr Mark Hyman http://www.huffingtonpost.com/dr-mark-hyman/how-to-stop-attacking-you_b_657395.html ).

So, in a way, it doesn't matter a lot which disease you have if the treatment remains the same. In another way it does matter, because having a diagnosis taken away from you kind of feels like all your suffering, in their minds, never happened.

Still, this situation of doctors refusing to diagnose people with a disease they obviously have upsets me very much. I can't see any morally justifiable reason for doing that.

I hope you get the answers and help you need from a doctor who listens to and respects you.

All my best-
Carla


Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich
http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

Is Lupus Genetic?

Dear Carla,
My mother passed away from Lupus and connective tissue disease. I was wondering if Lupus was hereditary. Thanks


Hello!

Thanks for writing in.
I'm so sorry you lost your Mom to lupus.
Not everyone realizes how serious lupus can be.

A lot of research has been and is still being done to attempt to identify a lupus gene.
According to blogger Iris (below in comments section), "The John Curtin Medical Research Institute at ANU has found the gene behind lupus.  They named it "roquin" after the patron saint of plague victims. Normal roquin leads to a healthy immune system, mutated roquin is the cause of autoimmune diseases, including lupus. http://www.sometimesitislupus.com/2013/05/towards-cure.html "

(Thank you Iris for the info!).

However, genes alone do not create lupus. According to the National Institute for Health, "In studies of identical twins—who are born with the exact same genes—when one twin has lupus, the other twin has a 24-percent chance of developing it. This and other research suggests that genetics plays an important role, but it also shows that genes alone do not determine who gets lupus..."

And according to the Lupus Foundation of America, only 10% of people with lupus will have a close relative who has lupus or may develop lupus. That's not a strong case for lupus being genetic.

The next question is: why are these genes mutated? Does it happen at conception or are they damaged during our lifetime? Looks like from the identical twin study we are not born a ticking lupus time bomb- something else has to come into the equation.

Some forward-thinking doctors (such as Mercola, Oz, Hyman) believe that genetics "load the gun" but it's lifestyle that "pulls the trigger." In other words, there may be more potential in a certain family to develop a particular disease, but that disease will only occur if enough challenges are presented to the body (for example, stress, poor diet, pollution, radiation, trauma, accidents, poor sleep, lack of community or good relationships, lack of joy, lack of meaning and purpose in life).

Only 1% of diseases are purely genetic. Meaning if your parents had the disease, you will definitely get it. Only 1%. That's good news, because that means most of the diseases you hear about, including lupus, can be turned around somewhat, or even completely, by lifestyle changes.

I was diagnosed with lupus in 1993. I had severe lupus, with kidney failure, congestive heart failure, anemia, stroke, and all the weakness exhaustion and hair loss that go along with it all. I was helped back to strength by medication but then, unlike many lupus patients, I was able to get off the medication and totally reclaim my health. I did so by making drastic changes in both my line of work and my diet (I am gluten free and dairy free and no artificial sweeteners or MSG, and I eat a lot of vegetables).

In short, if your mother had lupus, even severe fatal lupus, it is not inevitable that you will too. But you will need to make conscious healthy choices to avoid illness. Genetic tendencies run in families, but so do lifestyles and so do food allergies. I'd suggest you check out a few books on lupus, some of which may be available at your local library.

The Lupus Recovery Diet, Jill Harrington
Super Immunity Solution, Joel Fuhrman (not lupus book, but a wellness/ nutrition book)
How Can You NOT Laugh at a Time Like This (my book)
Integrative Nutrition, Joshua Rosenthal (you can download this book for free at www.singingpatientwellness.com It's not a lupus book; it's just about nutrition)

Any of these will give you some ideas on how you can use your kitchen and other choices to keep and even improve your current health.

I wish you all the best!
Carla

Carla Ulbrich

The Singing Patient: Author, Speaker, Humorous Songwriter and Entertainer

www.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"

Eating Gluten Free on Vacation

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Guest post: Eating Gluten Free on Vacation

Whether remaining gluten-free is a personal choice or a healthy necessity, vacation has a way of screwing up the best thought-out diet. Traveling means eating at restaurants, snacking on the road and trying new things – managing a gluten-free lifestyle is more difficult when you must deal with the unexpected. The key to staying healthy is planning.

Before You Go

Hit the road with a full stomach whether going to the airport or driving to your location. Travel is exhausting. There are bags to move, lots of walking to do and the stress of trying to figure out where you are most of the time. Eating before you go eliminates the need to settle for whatever you can find at the last minute. Start the vacation right with a healthy meal. That is one less you have to worry about while on the move.

Find the Right Lodging

Look for lodging that offers you the opportunity to cook, even if it is just a small refrigerator and microwave. Online travel sites let you select amenities you want in a hotel. This is a practical approach to finding a place with a kitchen. If the establishment has on-property restaurants, look on the website for menus to see what foods are available before making a reservation.

Consider calling ahead of time to let the hotel know you have an issue with gluten. This gives them the chance to wow you by stocking the mini bar with appropriate snacks or having items in the continental breakfast that are gluten-free. Corporate hotels may be prepared to deal with guests who have Celiac disease or another health issue that restricts their diet.

Use that same approach with airlines if flying for many hours. Let them know when you book the ticket that you have diet considerations.

Shop Around for Healthy Restaurants in the Area

Pick the places you want to try ahead of time. If you know what restaurants are available in the area, you can avoid problems when you go out. One of the major factors that I have found that made a difference in my travels was when I began to read the reviews on the areas and restaurants of where I was staying before hand. Without this knowledge, it is practically a free for all when you get to where you are going and this is what often leads to unhealthy eating and nearly impossibly to meat the gluten-free needs. In my recent travels out west, the reviews from other travelers proved pivotal to finding one of the rare Las Vegas Hotels that had a vegetarian menu.  When you are making a reservation at these restaurants, let them know you need gluten-free options so they can be ready. Just like the hotel, most restaurants survive on tourism and want to make an impression by helping you out. Make a list of foods that contain gluten or special handling instructions you require and carry copies with you to hand out, as well.

Pack up an Emergency Kit

Pack an emergency travel kit, so you have food to eat if you are stuck. If the family is at a restaurant or in a theme park and you are left with few gluten-free options, the emergency kit can fill in what you can’t buy.The emergency kit would include items that are easily stored and can be used to make a quick meal if need be. This could include some gluten free bread and peanut butter, or perhaps even a few gluten free protein and energy bars. The purpose of these items is simply to hold you over until you can find a place to feed your body with the appropriate foods.

Staying gluten-free and staying at home does not necessarily go hand in hand. People are better educated about food allergies and illnesses like Celiac disease than they used to be. The world is becoming more health conscious place to live. This means going on the road is not just possible; it is practical, as long you know your limitations and plan ahead for the trip.   

Cole Millen is an avid traveler and foodie who never forgets that life's best memories are made through real life apprehension of legitimate "experiences."

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How do the rest of you deal with eating a special diet when traveling? Eating out? Ordering takeout? Eating at a friend's house? Do you bring your own food? Bring enough of your own gluten-free food to share with others? Share your thoughts and challenges in the comments section!

Carla

Carla Ulbrich

The Singing Patient: Author, Survivor, Humorous Songwriter and Entertainerwww.thesingingpatient.com
www.facebook.com/TheSingingPatient
www.twitter.com/singingpatient
www.youtube.com/user/carlaulbrich
www.linkedin.com/in/carlaulbrich

http://tinyurl.com/348hroc - Carla's book "How Can You NOT Laugh at a Time Like This?"