Chronic Pain Patients Need Effective Pain Management

RA is a painful disease.  It damages joints and often has extra-articular manifestations.  My tendons are greatly affected by my RA.  You see, the tendon sheaths are lined with synovial tissue.  We all know how are immune systems zero in on synovial tissue.  My tendons are swollen and inflamed, and they stay that way.

Consequently, many of us depend on controlled substances to allow us some quality of life.  I wear a Butrans pain patch.  I also have two other medications I can use for break-through pain control.  They are all "controlled substances."  Every time I pick up one of these prescriptions, I show my drivers license and sign my name.  I understand why this is necessary.  Evidently, many people have become addicted to prescription pain medications.

There is a difference between being addicted to a drug and being dependent on a drug.  I am dependent on my pain medications.  Without these drugs, I would have no quality of life.  I would be in bed most days...all day long.   I don't "crave" any of the medications.  They don't even mask all of the pain.  This is probably a good thing.  I have never felt "high" or incapacitated by any of these pain medications.

I had an appointment with my orthopedic doctor a few weeks ago.  I appreciate my orthopedic doctor.  He has treated me for ten years.  When the bursitis in my hips wakes me up at night, he injects steroids. I have also had my shoulders injected, and Synvisc and Orthovisc shots in both knees numerous times.

I was surprised during my last visit to my orthopedic's office. I was asked to provide a urine sample.  The test immediately tells the doctor if there are opioids present in your body.  My orthopedic's NP explained to me that a report is generated a week or two later that shows if the medications are present in therapeutic levels.

I found this perplexing.  I said, "So, this tells you if people are taking their medications properly?"  The NP responded with a story.  She said, "Say a patient comes in here and walks out with a couple of prescriptions.  They come back in a month and we do the test.  We find no medications present.  What does that mean?"

I thought a moment.  My first thought was that the patient was not being compliant.  Then a light bulb appeared over my head.  "Oh, I said.  They are selling the drugs?"  She shook her head in an affirmative manner, and I finally understood.

Chronic pain patients are always being questioned about their pain medications.  Sometimes it is family doing the questioning.  Sometimes, it is friends.  Sometimes, it is a doctor.  I walked out of my doctor's office feeling a bit sad.

I was thinking about all of the people who are addicted to drugs.  I was thinking of all the people who work the "system" for financial gain.  Then I thought of all of the people suffering in pain because of the reckless and illegal behavior of a few. 

I am not unhappy about the urine test.  I think it is a good thing that my doctor knows I am taking the medications just as I am supposed to take them. 

I am unhappy about all of us who must have pain medication to function.  I know several RA patients who have been told by their family members that they just need to eat a different diet, exercise more,  take this or that supplement, and they will be cured.   This kind of unsolicited advice does nothing to help the RA patient who is already living with an invisible disease.

People are always questioning us.  How could we look so well, and yet be sick?  How can we be fine one moment, and suffer intense pain the next.  Why do we require so much rest?

The prescription drug situation is just one more obstacle for chronic pain patients to traverse.  This makes me sad.   I am sad because I have no answer.  I do not know how to make this situation better.  Many RA patients are required to see Pain Management Doctors, and sign contracts that say they will not obtain prescriptions from any other source.  That is an issue if and when one must visit the ER.

I do not know where this is going to lead, or how it will end.  My only wish is that people who truly need pain medication are able to have it.  I am blessed to have a GP who manages my pain.  Many RA patients are denied pain medication until they are in so much pain they are confined to bed.  Some doctors, including rheumatologists, often unjustly label their patients as drug seekers.

If you have a RA and are having difficulty finding a doctor who will provide pain medications, please do not give up.  Advocate for yourself.   Keep a file full of your x-ray, MRI, and CAT scan reports.  Take them to your doctor's appointments with you.  Documented joint damage and swelling could help your doctor understand that you are simply asking for help with pain control.  Without pain control, we have no quality of life.

RA Medications: Have You Found Your Silver Bullet?

Actemra seems to be my magic biologic bullet.  I have been on this particular biologic drug since January of 2014.  I switched from weekly injections of 162 ml to the infusions three months ago.

Actemra knocked down my inflammation markers ( CRP and SED rate ) almost immediately.  I did not have any apparent side effects when I was injecting weekly.  The infusions do come with a day or two of down time due to fatigue.  The day of the infusion, and sometimes the day after the infusion, I feel a little sick to my stomach.  All in all, well worth it.

The reason I switched to infusions was because I was approved for Medicare in March of this year.  None of the Plan D prescription drug plans available to me covered Actemra, except for one.  That one had a copay of 1,000 a month.   Medicare covers 80% of the cost of the infusion, and my supplemental insurance covers the rest.  I was told each infusion cost around $5,000.

Actemra does have a foundation that can help those who cannot afford the medication.  You must apply for the assistance every year, but it is a blessing to many.  People who are single and on disability have a very tough time affording their medications.  Their income is fixed.  They cannot work, and no one else in the household is bringing in income.  

My husband will be retiring soon, and he worries about us being able to afford my medications.  I told him we will take one day at a time.  He can still work a couple of days a week, but he doesn't have to work as hard as he is working now.  I feel a bit guilty because I think he could have retired last year if I did not have RA.  

I have two prescriptions that cost 350.00 a month.  One is my Butrans pain patch, and the other is Advair for asthma.  I am in the proverbial "donut hole".  Until we have another $4900.00 in medication expenses, I will be paying half of the retail cost of my prescription medications.  I wanted to see if I could get by using Advair only once a day.  The script is to written for twice a day.  My experiment failed.  I must use Advair twice a day. 

Without the Butrans pain patch and the Actemra infusions, I would be confined to bed.  My quality of life would be minimal because the pain would be intense.  I am thankful for these medications.  I wonder what the future holds, and I think about all of the people with autoimmune disorders who need help paying for their medications. 

For now, I will take one day at a time, and be thankful for each day.  I will continue to follow my own advice............Do not let anyone or anything steal your joy. 

 

RA & Mobility: Are You Worried About Your Future?

Do you ever think about your future with RA?  I notice most people avoid talking about RA as a "progressive" disease.  We are blessed to have biologics and other medications available to us.  These drugs slow RA down.  Still, don't you wonder from time to time just how "progressive" your RA will be?


I started injecting Actemra in January of 2014.  RA was attacking my feet at the time.  None of my toes touched the ground, because my RA is in my tendons sheaths.  My tendon sheaths are tight and inflamed. 




I was anxious to try Actemra.  Gone was the fear I had in the past with previous biologics.  I needed something to stop RA in its tracks.  My rheumatologist told me that she had ten "problem" patients, and she prescribed Actemra for each one of us.


My specialist is highly intelligent, and she didn't mean anything derogatory about calling us "problem" patients.  She isn't the most diplomatic person, but I love her communication style.  It is direct, and to the point. 


I didn't have a problem injecting the new medication.  I had injected Humira in the past.  By the way, Humira shots do sting---even when you warm the med up to room temperature.  I had no problem with stinging when I injected Actemra.  As long as I let I warm up for 30 to 45 minutes, there was no "sting" at all.


Actemra worked quickly for me.  It knocked down my SED rate and my CRP (C-reactive protein ) numbers after six weeks of injections.  It did not stop RA from focusing on my feet. I injected Actemra every week.  Many people inject every other week, and have good results.


Last fall I experienced an abscessed tooth, a sinus infection, and a gum infection all at one time.  I had the tooth removed, and took lots of antibiotics.  During this time I was off of Actemra, and I missed it almost immediately.  The overall stiffness and fatigue levels were overwhelming.


I am back on Actemra now, but I have switched from the injections to infusions.  My fatigue level is better, but my feet are not better. My rheumatologist recently prescribed custom orthotics with metatarsal bars.  I was fitted for those, and I should have my orthotics within a week to ten days.


Once again, I am hopeful.  I am looking forward to getting my balance back.  I am anxious to see if walking correctly helps my knees, hips, and back.


Still, in the back of my mind there is a quiet little voice.  It is whispering to me.  How long will you be able to walk?  Will Actemra infusions be able to halt the joint and tendon destruction?


I don't know the answers to those questions, but I do have hope. I have a great rheumatologist, a great General Practitioner, and an involved orthopedic doctor.  I know they will do everything they can to keep me mobile.


There will probably be a lot of adjustments in my future.  There will probably be many adjustments for you as you live your life with RA.  That is what we do.  We live with RA.  We adjust.  We keep moving............................one day at a time.