BEST LAID PLANS .... YOU KNOW HOW THE SAYING GOES!

Methotrexate Treatment and Back Pain

First, I'd like to say how happy I am to be back at my blog since my last post!  When I started blogging, I knew there would be days, or even weeks, when I couldn't write due to my lupus or fibromyalgia disease activity.  It's just a fact of my "new reality" that I'm not always able to control.  I set a personal goal of posting once a week with hopes for additional posts, or news topics, as my health and schedule allowed.  However, if you're one of the 1.5 million Americans living with lupus, or any other chronic illness, then you know how unpredictable your daily life can be.

Hence today's blog post title, "Best laid plans ... you know how the saying goes!"

So as I sit here typing away on my blog, my lower back and lumbar area is supported by multiple pillows and a heating pad.  In addition, I'm sitting on top of another layer of pillows including an orthopedic pillow to support the sacral joint.   Lower back pain was one of the early symptoms I experienced prior to my lupus diagnosis, in my early 30's.  I would blame it on my workout routine and thought I'd overdone it.  Upon consulting an orthopedic specialist, the diagnosis of degenerative disk disease was made.  On a fairly regular basis, my back would "go out on me" and I would be bedridden for days until treatment with NSAIDs (Nonsteroidal Anti-Inflammatory Drugs) and muscle relaxers kicked in; and slowly, I'd return to the physical duties of my law enforcement career. 

So for the past 17+ years, back pain has been an integral part of my life.  However, this recent episode had a new twist to it.  Last Saturday morning I woke up with shooting pain in my lower back, it was radiating throughout my hips and I was unable to get out of bed.  The pain intensified every inch I moved as I attempted to engage my core muscles to sit up in bed or roll over to swing my feet onto the floor.  I felt like a turtle on its back and completely helpless.  I looked over at Giggles, my dog, for assistance.  Well?  Can you help me?  She just burrowed her head into my side looking for her morning belly rub and chin scratch.  I don't blame her, I would too.   But, this particular day I was in distress.  As I said before, this isn't completely foreign territory for me to be experiencing debilitating back pain.  But, it is foreign to have a sudden onset before I even get out of bed.  Usually, some sort of action or event would occur; such as, bending over to pick something up, twisting my torso, or just leaning over sink brushing my teeth.  When the back goes out, all plans for the day go out the window and the focus becomes .... how do I stop the pain!

Every attempt to move was met with severe nausea, dizziness, abdominal cramping, alternating fever/chills and overall weakness in my extremities.  It took over 30 minutes for me to maneuver my feet onto the floor.  And it wasn't long before Giggles realized something wasn't right with her mom. She came over to my side of the bed and stood there until I could get up.  I was able to use Giggles for support to make my way to the bathroom.  I was mentally searching for what brought this on so suddenly and all the indicators pointed to one thing.... methotrexate.

I had received my weekly injection of methotrexate the previous day, on Friday.  I was starting to see a pattern of symptoms every time I received my injection.  I pulled out the prescription drug information sheet on methotrexate and also from Drugs.com.  I was experiencing at least 10 of the side effects listed.  Having this many side effects was definitely venturing into uncharted waters.  Normally, I would experience a few symptoms after my injection... extreme fatigue, loss of appetite, nausea, headaches, etc.; but they would dissipate after 24 - 48 hours.  This episode took over a week to dissipate and I still feel like I'm walking on eggshells to avoid a recurrence.

Follow-up Care

Definitely will be adding this to my list of concerns to discuss with my rheumatologist at the next appointment;  which fortunately, is this coming week.  Ironically, at my last appointment we discussed tapering down the dosage slowly; so as, not to produce a flare-up.  When the drug side effects begin outweighing the benefits for the medication, it's time to reassess!

I have been on methotrexate treatment for over 17 years and can attest to its benefits!  It kept me going when other drugs failed and I'm forever thankful for it.  More importantly, it spared me from relying on prednisone for constant long-term treatment.

Every lupus patient has their own unique set of symptoms and thus their own unique plan for treatment.  What works for one person may not work for another.  But, I feel it's important to share my personal experience and journey to help another person make the right decision for his or herself. Please do your homework before entering into any lupus treatment.  It's critical to your health that you do research and the proper due diligence; including, having a meaningful discussion with your doctor.

Just as lupus can keep us on our toes with it's unpredictability, so can the medications and treatments. Proper monitoring of a chronic disease such as lupus means having to adjust the treatment plan from time to time.  

411 on Methotrexate

Methotrexate is in a class of drugs called DMARDs (Disease-Modifying AntiRheumatic Drugs).  DMARDs work in stopping the inflammatory process that can cause symptoms and damage joints and internal organs in autoimmune types of arthritis, like lupus.  Because of this process, methotrexate can reduce your ability to fight infections.  It requires regular monitoring of blood and urine to check for liver and kidney toxicity.  Methotrexate treatment is very inexpensive compared to other lupus treatments and must be taken with daily doses of folic acid.  It is available in generic form (tablet and injectable), but needs to be closely monitored by your rheumatologist.  Please refer to the Arthritis Foundations annual drug guide, Arthritis.org,  for medication information and what you need to know for side effects and warnings.

I'll tune in next time and let you know how the doctor appointment goes.  Now it's Nap Time!!!    
     

LUPUS & CHEST PAIN

COSTOCON ... WHAT?

Chest pain should always be taken seriously.  Generally speaking, as a symptom, chest pain could point to a wide range of ailments.  But, when it comes to lupus, chest pain usually indicates serositis.  Serositis is among the list of 11 Criteria for the Diagnosis of Systemic Lupus; per the American College of Rheumatology (ACR).

According to the Lupus Foundation of America, serositis is inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis).

When I first experienced chest pain symptoms, it was about 3 years into my lupus diagnosis.  I didn't understand it, was I having a heart attack? The pain was intense and showing no signs of letting up.   After several weeks of this, I realized it wasn't going away and drove myself to the emergency room. In hindsight, probably not the best decision if it had been a heart attack.  But, I was pretty stubborn and didn't want anyone to know what I was going through.  I thought it might in some way cause my co-workers to doubt my abilities or question my performance.  Not what you want when working in law enforcement, your life could depend on whether or not the person next to you has your back.

PERKS OF HAVING CHEST PAIN?

So, the one perk to showing up in the ER complaining of chest pain is you go to the front of the line.  You're seen in about 60 seconds of arrival!  The downside is they're required to run the gauntlet of medical tests and you'll be there for hours.  My diagnosis:  pleurisy and costochondritis related to lupus.  At the time, I didn't know what either of these two words meant or even how to spell them; costocon .... what?

Costochondritis (pronounced kos-toe-khon-dri-tis) is inflammation of the cartilage where the upper ribs attach to the breastbone, or sternum.  Chest pain caused by costochondritis ranges from mild to severe.  Mild cases being the chest feels tender to the touch with some pain when you push on the sternum, or chest cartilage.  Severe cases cause unbearable chest pain which intensifies with your life and doesn't go away on its own.

At least now, I had an answer to the cause of my chest pain and I wasn't having a heart attack.  It's very difficult to describe chest pain to someone who's never experienced it.  Try to imagine an intense heaviness in your chest, a crushing feeling like there's a Bradley Fighting Vehicle (a tank) sitting on your chest; preventing you from taking a deep breath.    

According to the experts, costochondritis usually isn't persistent and goes away on its own.  Mild cases can last a few days/weeks and severe/chronic cases can last up to 1 year.  I kept clinging to the hope mine would dissipate and I could return to my normal activities.  I grew more frustrated and hopeless as the pain continued; my doctor ordered me out of work for weeks at a time on bed rest & I kept hoping it would end the pain cycle. At one point in my desperation, I tried steroid injections for the affected area.  Interpretation:  the doctor stuck needles (six of them) filled with a local anesthetic and steroid medication into the cartilage joints in my chest wall & sternum.  Did I mention my phobia of needles? Ouch!

Fast forward 15 years ..... I'm still living with debilitating chest pain as a chronic condition.  Unfortunately, my case was resistant to the usual treatment plan of non-steroidal anti-inflammatories (NSAIDs); but, I have found a way to manage it. 

My long-term care consists of the following:

• hot/cold therapy
• bed rest  
• physical therapy (gentle stretching for chest cavity, rib cage) 
• pain management
• lifestyle changes (avoid any exercise or activity that aggravates this condition; such as, lifting heavy objects, holding arms up to drive, coughing, lying on your left side, etc.)

(The chest pain associated with costochondritis is a common symptom of fibromyalgia.  Many lupus patients are also diagnosed with fibromyalgia.)   

 

DON'T IGNORE THE SIGNS

If you're having chest pain associated with lupus and/or fibromyalgia, please don't ignore it.  It's best to seek medical care immediately in order to rule out something more serious.  Even though costochondritis isn't life threatening, it can be debilitating and life altering.  The sooner you find the answer to your chest pain, the sooner you'll receive treatment.  

Have you had an experience with chest pain associated with lupus or fibromyalgia?  

             

LUPUS IN THE NEWS

Study Reveals Shockingly High Rates of Incorrect Lupus Diagnosis

In a recent report published by the Lupus Foundation of America (LFA), the American College of Rheumatology (ACR) convened at the American College of Rheumatology (ACR) Annual Scientific Meeting in San Diego, on November 3-8, 2017.  One of the many studies presented involved an LFA study of over 3,000 adults with lupus, which found that 46.5% reported being misdiagnosed with something other than lupus at the start of their search for answers to their symptoms.  In addition, over half (54.1 %) were told that "there was nothing wrong with them or that their symptoms were psychological."

According to the study, nearly 40% of those with lupus waited over 1 year from onset of symptoms to receive an accurate diagnosis.  This is in contrast to a previous study that showed it took almost 6 years from onset of symptoms to obtain an accurate diagnosis.  According to the LFA, these findings highlight the importance of continuing to provide medical education to primary and specialty health care providers about lupus symptoms.  There is an urgent need to shorten the time frame for obtaining an accurate diagnosis so that treatment can begin and reduce damage to vital organs; such as kidneys, heart, lungs and brain.  Damage caused by lupus increases the likelihood of developing long-term health complications, making early diagnosis crucial for people with lupus.

According to R. Paola Daly, Director of Research at the Lupus Foundation of America, "The results of this study will help us understand and in-turn, prevent the specific factors that lead to unacceptable delays in receiving a lupus diagnosis."  Also, as a result of this study, the LFA is seeking to identify the barriers that impede lupus diagnosis and ways to improve its accuracy.

Deja Vu

I don't know about you, but when I read this article I wasn't exactly shocked.  I thought, finally something is going to be done about it.  I recall how long it took for my diagnosis (over 2 years) and how many doctors and specialists I had to go through just to get it.  If I hadn't been persistent in my quest for answers, who knows how long it would've taken, causing untold damage to my organs. 

If you're like many of the lupus patients I've met over the years, at least one or more of the specialists you saw commented that your symptoms were all psychological; followed by, a suggestion you make an appointment with a psychiatrist.  As if just because you're a female complaining about generalized joint pain and unspecified muscle aches you must be making it up. Or because you don't "look sick" or your blood tests "appear within normal ranges" the only possible conclusion is not to believe the patient. 

In my experience, it was August, 2000, I'd just been told by my primary care physician (PCP) that she suspected lupus and or some other undiagnosed rheumatological disorder.  At this point in time, my ANA results were positive, along with the physical symptoms, and she referred me to a rheumatologist for further diagnosis and proper treatment.  My health insurance plan was a HMO at that time and I only had one choice for a rheumatologist.  After waiting over 3 months, I finally got an appointment.  The doctor spent about 15 minutes with me going over my history, blood test results and referral from my PCP.  I recall being very anxious to hear how we were going to proceed with treatment and how it would impact my law enforcement career.  I had a million questions.  Instead, the doctor looked at me with a very contrite smile and proceeded to tell me I didn't have lupus, nor any other disease, and all I needed to do was, "work out more".  I was mortified and shocked into silence, I didn't know what to say.  I was 36 years old, in peak physical condition, worked out 7 days a week, had a very physically demanding job on the FBI's Bank Robbery Squad, and was intelligent enough to know when there was something wrong with my body.

I returned to my PCP to discuss what the hell had just happened.  She proceeded to tell me that as long as I had a HMO plan that I would never receive the proper diagnosis and treatment for lupus.  She encouraged me to change my health care plan to a PPO and provided a few recommendations of rheumatologists in the San Diego area.  She'd continue to treat me and provide whatever support I needed.  I'll never forget thinking what a caring and amazing physician she is, going above and beyond to see that I receive proper treatment.  And what was wrong with the other guy, the rheumatologist that said I needed to "work out more"?  It seemed so transparent to me at the time, the potential cost of treatment was dictating whether or not he gave me a lupus diagnosis. Whatever happened to do no harm?  I was angry, frustrated and a few other expletives on how a medical professional of his training in the rheumatology specialty could allow him to treat a patient with such complete indifference.  His disregard for my health and the corresponding implications of not providing the lupus diagnosis and subsequent treatment plan was beyond my comprehension.

LESSON LEARNED

Ultimately, I found an excellent rheumatologist at Scripps Clinic, in San Diego; where, I received a diagnosis of lupus, fibromyalgia, costochondritis, interstitial cystitis, Raynaud's and Sjogrens.  There were a few other diagnoses added later on that I'll discuss in future blog posts; but, these were the foundation for my ongoing treatment plan. 

If you don't believe you're receiving the proper care from your medical professional team then keep searching for answers until you get them.  Gone are the days when you do whatever the doctor tells you to do; without question.  The responsibility has shifted to our shoulders to take charge of our own health care treatment plan.  I don't mean to imply you ignore the doctors advice, but if you don't feel you're being treated properly or the doctor isn't listening to your concerns, then you should pursue other options.

If I can pass on any advice, it would be to listen to your body and trust your instincts.  I knew something was wrong.  I didn't know what, but knew there was something very wrong.  It's not normal for a healthy, athletic young woman to have wide-spread arthritis in her mid 30's, or to have excruciating hand pain to the point she can't reload her Glock!

   

GETTING ORGANIZED IN 2018

TO KISS OR NOT TO KISS

Happy New Year!!

It's that time again, the new years eve festivities are over and reality sets in.  We make lots of resolutions to ourselves and make promises: to be a better person, exercise more, eat less, lose weight, go to church, etc.  What's your new years resolution?

As I look back over the years (before lupus), I've typically gone for resolving to take a vacation, spend more time with family & friends, exercise more or go on a date.  But, having lupus puts a whole new spin on things.  Living with a chronic illness can cause a lot of stress (actual and perceived stress) and make the simplest tasks seem insurmountable.

For example, last Thursday I woke up with a lot more pain and stiffness than usual.  My physical therapy appointment the previous day was a bit rough and I really just wanted to go back to bed.  I had a lot on my "to do list" and could already foresee it wasn't going to happen.  My hair needed washing (was way past its "sell by" date if you know what I mean), write a blog post and walk Giggles, my dog. On top of that, the cable guy was coming the next day to install new Internet service, which will allow me to blog bigger, better and faster; and the office needed to be decluttered and cleaned.  My current service provider, AT&T, has been so slow and unresponsive that I had to abandon my blog when I initially tried to go public, in 2016.  

From Bad to Worse

My day went from bad to worse when I heard a loud bang come from the laundry room .... uh, oh! That can't be good.  When I walked into the hallway, the laundry room was already filled with smoke, it was pouring out of every seam in the washing machine, there was a putrid electrical burning odor and it sounded as if someone had thrown in a bucket of wrenches and turned on the spin cycle! 

Note to self: don't ever leave the house with appliances running!  A fire could've easily started  and put me and Giggles in danger.

I wasn't wanting to add shop for new washing machine to my to do list; especially, on Dec. 30th!  That's not how I envisioned ringing in the New Year!  So, when life throws you a curve ball how you respond can mean the difference between having an emotional meltdown or maintaining your cool and taking action to resolve the problem.  And in the spirit of full disclosure, I did have to take a 2 hour nap first to avoid any potential emotional meltdown.  Then, my law enforcement training kicked in.  It's commonly known as KISS .... Keep It Simple Stupid!

It means go back to the basics.  Weed out all of the unnecessary "BS" and focus on what's really important.  Ask yourself, what's the mission?  What's your goal?  And all of the extraneous stuff or secondary details will disappear leaving you to focus on what's really important.  If it helps, consider putting it to pen and paper.  This will help you focus on one thing at a time and prioritize. 

We can't always control what happens to us or  prevent accidents from happening, but we can manage how we respond to them. 

Developing lupus and fibromyalgia was beyond my control, but now I have a plan on how to deal with it.  Sometimes, the unknown is stressful in of itself.  Having a plan of attack, or a go-to idea, can instantly relieve the pressure of the situation and make it clear on what to do next.

So, when you feel overwhelmed by your illness or circumstances you're in are out of control .....insert any scenario: doctor appointment, symptoms flaring, meds making you sick, overdue bills, kids need picking up from school, spouse out of town, can't afford your prescriptions, no food in the fridge, out of sick leave, dog needs walking, or when the washing machine catches on fire; just think four little letters.  KISS!
       
Lupus Brain Fog

The KISS concept is also very helpful when dealing with the cognitive symptoms of lupus.  Cognitive impairment, also known as brain fog, affects approximately 20 - 60% of people living with lupus.

Please join me in the next blog post where I talk about coping with the cognitive symptoms of lupus.

Just remember .....  KISS!