“Medicine sometimes snatches away health, sometimes gives it.” ~Ovid

 For some time, my husband has experienced horrific back pain due to a herniated disc.  An excruciating, unimaginable pain could turn the most formidable Olympic wrestler into a wailing crybaby.  In the past, he’s turned to prescription medications that have dulled, yet not eliminated, the pain.  He’s had physical therapy, and twice a day (when he feels better), he goes on our inversion table, trying to push the disc back into place.

Perhaps the most drastic solution he’s tried was the cortisone injections he received from his physician.  A shot of cortisone (an anti-inflammatory medication) is given, along with a numbing medication, to provide temporary relief to the affected area.  He’s received several courses of this treatment occasionally with some positive results.

But wait!  Hold the phone!  What’s this?  The latest scare concerns the same cortisone injections he once received and the seven people who died from them.  As of late Sunday, there were reports of 91 cases in 9 states of rare fungal meningitis, all linked to contaminated steroid injections.  According to CNN.com, the patients contracted meningitis after being “injected in their spine with a preservative-free steroid called methylprednisolone acetate contaminated by a fungus. The steroid is used to treat pain and inflammation.”

 “Stuff that's hidden and murky and ambiguous is scary because you don't know what it does.” ~Jerry Garcia

Is there anything that we can do, as patients and consumers, about having full disclosure on a medication or procedure we need to have?  Are we at the mercy of the drug companies who manufacture these drugs and the compounding pharmacies who copy them?  Do we need to choose between harming ourselves with drugs or living with pain without them? That reality both angers and scares me and renders a feeling of complete helplessness.

I am proud to be part of a great MS community of friends I have found on Facebook and Twitter.  They are like-minded people who listen, support and advocate for each other.  Our disability creates the need for a better quality of life, and we always reach out to help one another.  Over the past 16 years, numerous FDA-approved MS drugs have been on the market.  Yet we are still guinea pigs, suffering many challenging side effects over the years and sometimes even death. (See Tysabri and the controversial CCSVI).  Sometimes the medication we take to make us well makes us sicker.

“Friends show their love in times of trouble.” ~Euripides

So what can we, the consumer, do to protect ourselves?  How can we continue to advocate for better care from our doctors, better communication from drug companies, and better awareness of problems surrounding our medications?  Here are some ways I’ve found to change the feeling of helplessness to being more in control of choosing what we put into our bodies:

 1.  Drugs@FDA: FDA US Food and Drug Administration site.  Use this site to locate an FDA-approved medication.  It lists the drug's name, its form (capsule, liquid), and possible side effects.

2.  Daily Med: By the National Library of Medicine, this site provides “high-quality information about marketed drugs and information including FDA labels (package inserts).
3.  CDC (Centers for Disease Control): You can check medications on the market.  In this case, I checked the “Multistate Meningitis Outbreak Investigation” to read an update and summary on the current situation of the outbreak.

4. Pharmacy Compounding Accreditation Board: If you go to a compounding pharmacy, you may use this site to see whether it is accredited.  According to the site, “While all pharmacies must meet licensure requirements, PCAB-accredited pharmacies have gone the extra mile to demonstrate that they comply with nationally accepted quality control, quality assurance, and quality improvement standards.  This helps assure that the patient receives quality medication.”

5.  Call your local State Health Department and/or clinic and hospital:  If you are like us and have a question about a current problem with a medication, ask whether the issue is ongoing or if it is being resolved.

6.  Peer Reviewed Journals:  Once again, knowledge IS power. Take the time to read up on the medication you were prescribed.  Peer-reviewed journals are the perfect place to start. According to The University of Texas (Austin) website: “Peer Review is a process that journals use to ensure the articles they publish represent the best scholarship currently available. When an article is submitted to a peer-reviewed journal, the editors send it out to other scholars in the same field (the author's peers) to get their opinion on the quality of the scholarship, its relevance to the field, its appropriateness for the journal, etc.  Publications that don't use peer review (Time, Cosmo, Salon) rely on the editors' judgment of whether an article is up to snuff. That's why you can't count on them for solid, scientific scholarship.”

Regarding our health, we must do all we can to make the best choices for our loved ones and ourselves.  I hope what I’ve offered you here has been helpful, and I encourage you to leave a comment to let me know your thoughts on all I’ve said.   Let’s empower ourselves!

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DISCLAIMER:  Comments from An Empowered Spirit are brought to your attention on topics that could benefit you and should be discussed with your doctor or other medical professional. I am not medically trained, and my posts are journalistic and not instead of medical advice. An Empowered Spirit and its author will not be held liable for any damages incurred from using this blog or any data or links provided.