Let's Play Medical Pinball!

Apparently, I'm a slow learner.  I believe that when things/people/events show up in one's life they present opportunities for introspection, learning and growth.  Sometimes it's to practice patience, listen better, explore other perspectives, remember to be grateful. 

The latest "opportunity" in my life is arthritis and chronic pain.  I've been dealing with increasingly frequent and more painful swelling in my hands and feet and arthritis in all my joints since April of this year.  (I posted pictures on an earlier post).  Some days I cannot get out of bed without assistance.  Seven months is a long time to live like the rusty Tin Man from Oz.

Not My Department
At first, the doctors put me back on prednisone (despite my previous horrible experience with it) because it is considered the "gold standard" for dealing with inflammation.  It helped for awhile, but never completely knocked out the inflammation and pain.  By August, the side effects of the prednisone outweighed any benefit.   Tests for Rheumatoid Arthritis and Lupus came back negative.  Whew!

All the while, my rheumatologist who treats me for Behcet's Disease was sympathetic to my plight but didn't have any answers.  This would be an extremely rare side effect of the Remicade treatments, so he ruled that out.  His hunch is that it is caused by the Polycythemia Vera disease process.  He prescribed Colchicine (now called Colcrys) and I've been taking it for two months with no relief.

My hematologist/oncologist believes it is rheumatological and not caused by the PV.
My internist said that because I am a "complicated case with two rare diseases."  The inflammation could be a result of one of the disease processes, a side effect of the Remicade infusions I get every 6 weeks, or something altogether new.  

Still Haven't Won this Game!

Living the Life of a Pinball
This fall, we "kicked it up a notch" and sought specialists at Emory University Hospital.
I've been wanting to change my treatment for Polycythemia Vera from Hydrea to Pegylated Interferon because my blood counts are difficult to manage, even with higher dosage of the Hydrea.

There is a non-randomized clinical trial through Emory that I might be able to join.  It appeals to me because the study will document the effects of peg-interferon on PV patients.  I find comfort in the notion that this illness has meaning if it contributes to greater knowledge for future patients.

Dr. Winton, the trial manager at Emory, requested I consult with their rheumatologist who is experienced treating Behcet's patients.  That doctor viewed my parts that were swollen at the time of the visit as well as photos I've kept of previous flares.  He concurred with my Kaiser rheumatologist that the inflammation process was not related to Behcet's, Remicade, or any other rheumatological disorder.   

With the mystery inflammation acting up, Dr. Winton is reluctant to have me start taking interferon.  Interferon can have many undesirable side effects;  it can trigger auto-immune responses.  I don't need gasoline on the fire!

Ask the Experts:  Fellow Patients
Accessing the wisdom of my extended, international PV family, I shared pictures and queried whether anyone else has these issues.  Turns out, it's rare, but YES.  I was directed to explore Erythromelalgia (EM), another rare disease.  Some PV patients develop symptoms best described as EM.  It turns out that EM manifests in several shapes and forms.  It is a clinical diagnosis (the only test is for patients who have a genetic pre-disposition -- generally younger onset).  There are no tests for folks like me who may have "secondary EM." 

So, back to my doctors I go, armed with this new information.  "Not likely" is the response I get from all but my internist.    Still, I try a few of the treatments that work for some EM patients.  I've tried taking antihistamines (both H-1 and H-2 inhibitors), plain old aspirin, and colcrys.  All to no avail.

My Next Experiment: 
I am going to hold off on Remicade infusions (the next one is scheduled 3.5 weeks from now) and see if the inflammation resolves when the Remicade leaves my system.
Why shouldn't a very rare side effect occur in someone who appears to specialize in "rare" conditions?   Know I've got to keep fingers crossed that Behcet's stays away when the Remicade wears off.  There aren't many other treatment options available to me.

Let's Try Another Approach:  Acupuncture
Two weeks ago, I began seeing an acupuncturist (professionally, of course -- Robert approves!).  She determined that the primary cause of this painful inflammation is too much "heat" in my system.  My blood, in particular, carries too much heat; likely due to the toxins in my system.  

Toxins... really?  You mean all those chemo pills, warfarin, and host of other meds can be toxic?

She explained that the acupuncture process will take awhile for meaningful results because it is working against all the medications I put in my body every day.  [Note:  she is not encouraging me to leave Western medicine, nor claiming to have the cure for the PV or Behcet's]

Judge these non-retouched images at your own risk!  I'm pretty cranky these days. ;)

The needles don't hurt a bit!

Frustration Galore
The frustration has become overwhelming.  It conjures up a slew of non-productive questions in my mind:

How come so many intelligent, highly-trained doctors cannot determine the cause, or at least identify some treatment options for the inflammation?
Sometimes it feels like they can't wait for my office visit to time out.  It can't be easy for them to have no answers.

How much worse would it be if the physical symptoms of the pain could not be visibly observed?  
Even I think I'm making this crap up sometimes!

How many days of intense pain can a person reasonably endure?
The pain can consume one's thoughts and make it difficult to think of, let alone tackle, everyday life.  I'm taking low doses of Lortab (hydrocodone & tylenol) and have resisted stronger pain meds for fear of addiction.  Some patients are really struggling with this issue, on top of everything else.  

How much are these illnesses harming my wonderful kids and hubby?
Moms are supposed to protect their children, be strong, and set good examples for their kids.  "What's for dinner?" is a reasonable question;  it shouldn't be answered with "I don't know ~ go fix yourself something."

What would happen if I stopped taking all medications and let my body de-tox?
Not sure if my body could de-tox before the blood thickens, new clots form, strokes occur, and Behcet's sores take off again.

What the heck am I supposed to learn from all this?
Now this question prompts me to find the humor in this.
Stay tuned for the next post!

URL Pharma Price-Gouging of Colcrys Is a Pain in the Foot

When I had my first gout attacks as a result of my Polycythemia Vera, the doctor prescribed colchicine to provide relief.  Colchicine is a generic drug that is 1,500 years old (it comes from the seeds of the autumn crocus) and was used by the ancient Egyptians and others to reduce inflammation and other pains.   

In 2010, my $10 prescription co-pay priced the pills at $0.16 each.

Last month, my rheumatologist prescribed colchicine again -- this time for extremely painful and inflammed joints and tissue inflammation (erythromelalgia).  

Bring back the colchicine!

I went to pick up the medicine and the pharmacy tech asked, "Are you sure you want this Colcrys?  It's $328.75."

"What?  I want the generic version, colchicine.  I don't need the name brand version." was my reply.
She went back to the pharmacist to ask about this.

How could a single pill go from costing $0.16 to $5.48?   What the heck?  

Here's what I learned:

In 1962, the FDA began a drug testing and approval process to make sure that new medications on the market are safe, effective, and accompanied with helpful information for physicians, pharmacists, and patients.  

In 2006, the FDA began the "Unapproved Drug Initiative" to get old medicines that have not gone through the FDA approval process off the market.  These old drugs were about 2% of the prescriptions written at that time.  The intent is good:  protect us from bad drugs and potential dangerous side effects and interactions of medications. 

It turns out that in 2009, URL Pharma agreed to take Colchicine through the FDA's review and approval process.  In return, it gets three (3) years of exclusive rights to sell the Colcrys for gout and seven (7) years to sell for Familial Mediterranean Fever (through the Orphan Drug Act).  

It also can price it however it chooses.  The FDA does not regulate pricing of drugs.
But how much is too much???   
I believe increasing the price by 34 times higher is beyond greedy... it is downright cruel to people who are ill and in significant pain.

So here's the practical rub:  

The study with 1,000 patients conducted by URL Pharma met FDA requirements, and it did not provide any new insights about the drug, contraindications, or interactions that were previously unknown to the medical community.

We are no safer today with colchicine (aka Colcrys) than before URL Pharma came along.  What was a generic drug (and quite affordable) has become a brand-name drug owned and sold in a monopolistic, predatory manner.

A rheumatologist told me that in a few years, it will go back to the $0.16 per pill.

I double-checked with my rheumatologist about this medicine, given my sticker shock.  
We decided that I would bite the bullet and get the colcrys.

Today, I went for my refill and learned that the price dropped a whopping $4.00 for 60 pills.  So this month, each pill costs me $5.41.  That's still predatory pricing in my book.

This drug that costs $5.41 per pill used to cost me $0.16 per pill.

The pharmacy tech that dispensed the Colcrys to me said, "Wow!  I couldn't afford to take this medicine if I had to.  You're lucky you can afford it."

I asked him if he sees a lot of patients who leave prescriptions at the counter because they are too expensive.  "Several times a day," he replied.  "Some people ask for a week's worth of a prescription because that's all they can afford this week or this month."  


His words really hit home... I am indeed lucky.  

I am married to a wonderful guy who has a great job with excellent health insurance coverage.  I have not been able to work in a meaningful way since struck by illness and that has taken a huge toll on me mentally and emotionally.  (We miss the earnings in our household budget, too).

If dear hubby lost his job and health insurance, I would be among the millions of "Un-insurables" with serious pre-existing conditions. 

The State of Georgia defers to the federal government's High Risk Insurance Program for people like me.  To qualify for the federal program, I would have to be uninsured for 6 months.  I'm pretty sure we wouldn't be able to afford 6 months of specialist visits and all my medications (we'd likely make too much money to qualify for patient assistance programs).  I would likely experience thromboses again and maybe a stroke out before I could access the medications again.

It's no wonder that medical bills are the #1 cause of personal bankruptcies in the United States.  People will do anything they can to ease the pain of their loved ones.

My parents taught us this maxim:  Just because you can, doesn't mean you should. 

This concept applies to many aspects of life, including price gouging.  

Imagine a world where people, corporations, organizations, and governments adhered to this!

Feeling Hot, Hot, Hot

Just when I think I'm managing my "new normal" something unexpected and significant interrupts my well-being.  My hubby asks, "when are the locusts arriving?"

This past spring, my toes, feet, fingers, and hands began to behave in a most unusual way:  they would turn red, swell up, and itch like crazy.  It starts with a tingle, then the tissue would rise before my eyes.  Remember those pieces of cardboard that turn into sponges when dipped in water?  

The first couple of months, the swelling would occur in one limb for a couple of days and then disappear, only to "re-emerge" in another extremity.  It was unpredictable and painful.

I was put back on prednisone because it's considered "the gold standard" for inflammation.  I was in so much pain that I agreed to take it despite my previous experience (a full-year of me becoming an irritable, annoying, and extremely overweight insomniac).  I was desperate!  
I tried it for 3 months;  at first it seemed to reduce the swelling, but after a couple of months it made no difference. We had to try something else.

I share these pics with the following disclaimers:  Yes, I know that I need a pedicure.  Yes, my feet could easily make Time magazine's "Ugliest feet in America" award.    

The foot tissue swells, itches & burns.

See the difference between the swollen right foot & the unaffected left foot?

Side view of both feet.

The inflammation seems to bounce around from foot to hand to foot to arm.  When my feet are inflamed, walking is extremely painful.  

Now, take a look at these ever-attractive hands:

Ring finger swells into hand.

 

Top of hand swollen, but not red.  Weird!

Hand & fingers so swollen I can't hold anything.

Right hand swollen & thumb burning red.

    

Right hand & joints swollen and sore.

When both hands are inflamed, major ouch!

In addition to the tissue inflammation, the joints became involved.  When the joints in my hands, knees, and feet are involved, my mobility is severely limited.  

Thus began a six month journey to find out what the heck is going on and what can be done to make it stop.  

I was tested for Rheumatoid Arthritis (because the inflammation had a symmetrical pattern on the extremities) and that came back negative.  Gout was also ruled out.

My rheumatologist confirmed that these symptoms are not at all related to the Behcet's Disease (auto-immune).  My Behcet's symptoms are well-managed with regular infusions of Remicade.  I also learned from others living with Behcet's that this is not one of their experiences.  

Through the great world wide web of support groups for people living with Polycythemia Vera and other MPNs, I was encouraged to pursue a line of questioning for Erythromelalgia (EM).   I brought the information (and photos) to my internist for consideration.  His research confirmed that these symptoms can occur as a result of the PV.  

The Erythromelalgia Association (www.erythromelalgia.org) provided some helpful information and links to other resources, including EM patient groups.  Once again, here's  a rare, odd chronic health condition that has no clear treatment.  What works for some doesn't work for others.  They confirmed that the trial and error path I'm on is par for the course.  

At the doc's suggestion, I apply lidocaine patches to the areas at the earliest sign of inflammation.  This helps to mitigate a full-blown inflammation for the area covered, but sometimes the swelling occurs above or below the patch.  I've also been taking antihistamines (both H1 and H2 blockers) and Colcrys (the now-expensive colchicine, an anti-inflammatory med) all to no avail.

After five weeks of continual swelling of hands, knees, and feet, I was ready to jump.

One day when my hands were swollen, I drove past a Chinese foot massage shop and decided to check it out.  Foot reflexology can be relaxing at worst, and curative at best.  Using my smart phone, I checked out the reviews of the foot massage place.  I decided to give it a try.

I must say, after the one-hour reflexology massage, I was relaxed and in less pain.  I went back the next day for more.  It didn't cure, but it does feel good!

When I showed these photos to my niece who is a chiropractor and acupuncturist in California, she said that they are signs that I have too much heat in my system.  I decided to find an acupuncturist in my area who could help me with this. 

I had my first appointments last week with Leena Sikand-Cook of Healthy Body and Soul clinic in Lawrenceville.  Leena explained that Chinese medicine is about keeping the body in balance.  She read my pulses and indicated that my blood has too much heat.  

Here are a couple of pics my friend took of me during my second appointment.

Please ignore all my chins!

These needles don't hurt a bit - really!

She also pricked the tips of my fingers and toes to get a few drops of blood to escape.  I'm going to give this some time to see if it will provide some relief.
Stay tuned...