One of the most insidious barriers to proper treatment of Rheumatoid Disease, and other painful diseases, is something that has become a touchy topic and a political hot potato: the controlled status of various medicines to treat disease symptoms. For the past few years, I’ve encouraged patients to recognize and consider options for both disease treatment and symptom treatment to live their best lives possible. Most people with Rheumatoid Disease live with a dozen or more symptoms; and disease treatments provide incomplete relief.
Here on my front porch, I’ve sometimes shared about my own treatments, when it seem like it might help others. Tonight, I find myself where the roads of Helpful-to-share and Touchy-subject intersect. I hope telling my story helps someone understand the patient perspective related to the battle some authorities are fighting against “controlled” medicines. I’m not sure how it could be controversial to treat the suffering of fellow human beings who endure so much through no fault of their own, but I know it needs to be addressed.
Example: Treating symptoms of Rheumatoid Arthritis in the spine
Rheumatoid Arthritis is a pain in the neck. In fact, it’s worse than that – it damages the neck. For years, mine produced unexplained abnormal tests. Since my diagnosis, the neck is one of several places that is almost always actively inflamed. I’ve sought care for my neck for the past few years through a practice that specifically treats spinal issues. Care has included facet and epidural injections, radio frequency ablations, oral medications, and monitoring through periodic imaging. It is not perfect, but it has allowed me to continue to function while my neck is damaged and inflamed, but not yet in need of surgery.
What’s it like? It’s not as bad as it could be, I know.
Most of the time: It’s tender. There are noticeable strange snapping movements in some of the joints – I can feel them and hear them, sometimes when I move or just swallow. If I look up, I have to support my neck with my hand. I often have numbness in either hand.
Sometimes: It’s unbearable and blinding pain. I can’t lift my head or carry on a conversation. The pain is the same icepick as in my shoulder, but in a neck joint. Sharp pain either shoots down my arm or across the base of my skull past my ear.
Finding the right medicine can be a big help
Like most people, I hate side effects. The point of medicine is to make my life more normal – not make me nauseated or make the room spin! Over the past few years, the doctor prescribed various different medicines to manage the flares in the spine. I’ve learned to test out low doses at home in the evening to check my response. And I eventually found what works best for my neck (and my lumbar spine –not the same). When my neck starts to go from “most-of-the-time annoying” to “sometimes-unbearable-and-blinding,” I take a therapeutic dose of NSAID (800 mg of ibuprofen in my case) and 250 mg of carisoprodol, generic for Soma. This combination of anti-inflammatory with a low-dose muscle relaxer, together with a cup of coffee and ice on my neck usually means the difference between painful-but-functioning and lie-in-the-dark-unable-to-sit-up.
(Here’s a fair article on Soma about less side effects of the low dose, with caution for long-term use. Genetic differences appear to play a big part in how it is metabolized. You’ve heard that before.)
When did it become controversial to treat suffering?
When the back doctor moved out of state, my case was transferred to a colleague. After a couple of months of bad neck symptoms, the bottle of Soma I’d used for over a year was almost empty. So I brought it with me to the appointment and asked a nurse if the new doctor could refill it. The nurse said, “There is no way she is filling that for you.” I said, “Really? How come? I finally found something that helps my neck and I have no side effects.” The nurse yelled at me, “There is no way the doctor is going to risk her license to give you this addicting drug.” I felt like I would cry, but I didn’t. I did say something about how I’m just trying to understand why that would be the case. The nurse went around the corner and l heard her tell the doctor, “She’s giving me an argument.” That, and other things we observed there, convinced me to find a different replacement for the doctor who moved away.
I rationed the Soma I had, never taking the medicine at night because I usually sleep very deeply with a high pain tolerance. A few weeks later, there were only a couple of tablets left, when I had a regular checkup with my good GP. I showed him the almost empty bottle and told him it helped my neck. He had just read my latest cervical spine MRI report and nodded that of course he would write the prescription. The nurse created a state-required embossed prescription that restricted it to a particular local pharmacy. I dropped it off at my local CVS and returned in a few days to pick it up. They said, “I’m sorry but your insurance refused to fill this without a prior authorization from the doctor.” I said, “I brought a prescription from the doctor; isn’t that prior proof that he authorized me to buy it?” Yes, I know industry considers “prior authorization” to be a separate thing, but I wanted to point out how unfair it sounds to a patient. Anyway, I told the pharmacy assistant that I knew it wasn’t her fault and drove home thinking, “If my doctor took the trouble to create the prescription that the state of Florida is requiring, then he has already pre – authorized the Soma…”
There’s something wrong with this picture
A young bright mind like, say, my daughter Katie Beth, can study hard for 7 years to learn to do pharmaceutical research to create new medicines…
She can dedicate her life to discovering a medicine to help suffering people, likely working a whole decade on a single project. Do you realize that most medicine researchers spend their whole careers not seeing an experimental effort actually become a medicine that can be sold and used?
Meanwhile, across town, some child’s dear parent or some parent’s dear child gets sick.
And you guessed it – one of those days, the young eager scientist creates just the right medicine the sick person can use.
And eventually, the medicine is approved as safe to market.
Will the patient be able to get the medicine when her doctor prescribes it? Or will authorities make doctors too afraid to prescribe it? Or will a 3rd party payer – insurance or government – it doesn’t matter which – be able to decide the patient doesn’t need it? Can adult patients be trusted with needed medicines created specifically to help them?
A battle over “controlled medication”
I’m a cheerful girl and I’ll be fine – I’m always sure of that – so don’t worry about me…
I checked with the pharmacy each day last week, and the doctor’s office and insurance company a couple times. Someone at the insurance company said the problem was I “asked for so much medication.” I felt angry and told her she had no idea what my diagnoses were or why I needed it.
Why did it seem like they thought I had a drug problem?
Finally, my neck did what we feared – it flared again. I could’ve taken a stronger medication to make it bearable, but I needed to be alert to attend my son’s play, so I decided to pay almost $13 dollars cash for 3 tablets out of my prescription. The pharmacist said the insurance woman was mistaken: if I’d been prescribed the larger 350 mg dose, it would’ve been easily approved with no pre-authorization for $10 for the whole prescription. The lower dose is newer… and more expensive.
I kept calling and the low-dose Soma was finally approved for $45 for the prescription minus the 3 tablets I’d already paid for. I paid $58 altogether – six times as much as for a higher dose. And, I had to drive across town the next day to get the medicine because they don’t have any in stock since “it was on hold and it’s a controlled medication so we can’t get it sent here for you.”
To some authority somewhere, “controlled” must mean “prevents crime,” but to doctors, patients, and pharmacists, “controlled” means more expense, more time, more pain, and more hassle. There must be a way to crack down on whoever improperly sells pharmaceuticals without making innocent people suffer.
This post describes my experience and reaction to it, not medical advice. Please read the Disclaimer.
- Rheumatoid Arthritis Symptoms Not Alleviated by Disease Treatment
- How Rheumatoid Arthritis Pain Affects Women’s Lives
- Rheumatoid Arthritis Requires Disease Treatment and Symptom Treatment
- Five Things I’ve Learned about Rheumatoid Arthritis in the Neck
- Laura’s CVS Commercial with Kelly’s CVS and the “a” Word
- The 10 Fundamentals of Rheumatology Care for Rheumatoid Patients