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
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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