Category Archives: medications

Just Add It To The List

The life of someone with a chronic illness is not easy. Not only do we have to live with the cards we are dealt, but we are constantly bombarded with new ones. Every time a new symptom pops up in our lives, we have to question it: Is it caused by the tremendous stress we are under? Is it a new symptom to a current illness? Is our illness getting worse? Is it, Heaven forbid, a NEW illness?

The sad truth is that those of us with a chronic illness -like fibromyalgia or the plethora of autoimmune diseases out there- are susceptible to developing other illnesses. We can lose track of all the diagnostic labels thrown at us by well-meaning doctors. It is a dirty secret in the fibromyalgia community that none of us have just fibromyalgia. If I counted all my illnesses using my fingers, I would easily need both hands. Now image trying to take medications for all of those! I am lucky enough to have found medications that treat multiple symptoms and illnesses.

Recently, I succumbed to family pressure to jump down the rabbit hole of medical tests yet again. After enduring so many tests in the past with little to no helpful results in the end, I was not eager to go through them again. However, my symptoms were not getting any better and those who care for me were very worried. For three years I was losing weight at a steady rate without intentionally changing anything I was eating or doing. I would have flare ups of symptoms for discreet amounts of time – e.g., nausea, vomiting, abdominal pain, bloating, inability/desire to eat, feeling full quickly.

I started going to a GI doctor at a prestigious hospital hoping she could figure out the problem. If anyone ever complains that socialized healthcare in Canada or the UK is slow, they obviously have never tried to be diagnosed in the US. Unless you are in critical condition (i.e., dying), the process can be painfully slow. It can take up to three months to get an initial appointment with a specialist. Then, another month to get in for a test and another month to see the doctor again. If your tests come back normal -like mine do- this goes on and on. After almost eight months, I still have no official diagnosis but have dished out the overwhelming sum of almost $1000. How does one pay that bill on disability?

I was so distraught over the last test coming back normal that I called my doctor. I was upset and discouraged. I honestly did not see the point in going through more tests. I was finally on an anti-nausea medicine that helped enough to stabilize my weight. I was to the point where I was just going to suck it up and suffer through my debilitating flare ups. I was already on disability. My prospects of ever working full-time again were slim to none. So what if I was in more pain and more disabled than before? What difference does it make? It isn’t like they give you more money the more disabled you are. There is no prize for being the “disabled-est.”

I would like to congratulate my doctor for not giving up on me. She is also the type of doctor who doesn’t blindly follow tests. She knows they are not always correct. She knows that they can be normal at times even when you are really sick. She knows that if I am not in a flare up those omnipotent tests are not always omnipotent.

She came up with a working diagnosis – gastroparesis. It basically means that during flare ups, my stomach forgets to digest food so it just sits there for hours and hours and hours. I can vomit my dinner six hours later. That, my readers, is not normal! Instead of waiting for a test to comeback positive, she prescribed medication for it.Unfortunately, the medication does not always work and has a list of permanent side effects. Those are side effects that do not go away even if I stop taking the medication. I am not sure I want that added to my already complicated life. So what does that leave me? You guessed it! I need to suck it up and live with it…

Pain Specialists and Their Lack of Training

I recently came to the realization, through the help of some well-informed friends, that there is no governing body in the world of medicine that officially endorses so-called Pain Specialists. Anyone can add that misnomer to their credentials after the most basic of training in the non-existent specialty. Since there is no American Board of Pain Management to oversee training and licensing, patients are left to the mercy of the individual doctor’s educational pursuits. There is no easy way for patients to evaluate the experience or training their doctors have received. There are no standards for pain management that patients can rely on during their appointments. If you have every been in pain, especially chronic pain, this is a very real and scary situation.

Only three specialty boards have a sub-specialty in Pain Management –  Anesthesiology, Physical Medicine and Rehabilitation, and Psychiatry and Neurology. They all use the same certification material and test that was developed by the American Board of Anesthesiology dated 2010. However, it is safe to assume that they approach pain management from their own specialty’s perspective. Anesthesiologists will be the first to recommend epidurals while psychiatrist will recommend therapy or antidepressants, and specialists in physical medicine and rehabilitation will recommend exercises and hot/cold therapy. A lot of good research has been done on the different types of pain, pain management therapies, and specific pain-related diseases and disorders in the past four years. I find it disheartening that the educational material might not be keeping up with the progress being made. Also, what exactly are the other doctors learning about pain and pain management? The single chapter in their med school textbook? Every doctor will need to treat patients in pain. I can guarantee that. Pain management should be a required course for all medical students. They should also be required to do a rotation in a reputable pain clinic before graduating.

Now let us discuss pain clinics. They are not regulated. They are not required to have a licensed medical doctor on the premises. I have seen some where a nurse practitioner runs it. There is a growing trend among chiropractors to jump on the pain management bandwagon and call their practices pain clinics too. All too often, pain clinics focus on one single, solitary treatment for a patient’s pain – regardless of the causes. In my eyes, the designation of pain clinic should only apply to a practice that actually takes a multidisciplinary approach to pain management. That means they have a staff who specialize in a variety of pain management approaches – this can include massage therapy, spinal injections, different exercise options, stress management, medication management, trigger point injections, acupuncture, chiropractic manipulation. Pain is too common a condition for our healthcare system to ignore in this way.

Healthcare in New Jersey – Fail First

The state of New Jersey still allows healthcare providers to override orders from doctors. Despite lacking a medical degree, insurance companies can dictate to doctors what medications to use on patients first. The insurance companies actually have lists of medications for certain medical conditions (which for some reason usually are chronic pain conditions). These lists are generated based on profits and losses. They are based on financial reasons. They are based on closed-door deals the insurance companies have with different pharmaceutical companies. The one thing that is NEVER take into consideration when generating these lists is what is best for the the individual patients.

You might be thinking what’s the big deal. So a patient tries one or two medications first. Maybe those will work; maybe they won’t. However, think about the current healthcare insurance environment. People are shopping around for the best deals. That means people can be switching plans and companies on a yearly basis. Patients would have to prove EVERY TIME THEY CHANGE PLANS that they have already tried their new healthcare insurance’s approved medications and failed to receive relief from them. We all know the red tape and bureaucracy that exist in large companies. It can take weeks or months to finally get approval to fill a prescription that the patient has had for years. If it is a medication taken daily, the risk of withdrawal is not only a potential side effect of Step Therapy ( also known as Fail First), it is a given. Who will care for a patient going threw withdrawal? The Emergency Rooms. It is far more expensive to go to an Emergency Room that to simply be allowed to take a medication the doctor has been prescribing for months or years.

The other problem with this system is that it supersedes the doctor’s medical opinion with the healthcare company’s financial opinion. The doctor supposedly has years of training and continuing education to back up his or her recommendations. What does the insurance company have? A handshake and price cut from their preferred supplier.

There is currently a bill winding its way through the New Jersey Legislature. It was introduced on June 18th, 2012. Where is it now? It is lounging out with the Senate Budget and Appropriations Committee. It has not even been mentioned since January 6th of this year. How long does it take to provide needed relief to thousands of New Jersey citizens?

I challenge the elected officials of New Jersey to dare to do something great.

Step Therapy – All Cons

It has been four weeks since I swallowed my last pill of Relpax – a triptan medication that works great at knocking out my moderate to severe migraines. I tolerate it well with few side effects. I have so many symptoms with my migraines that it is hard to tell if this medication causes any side effects. It is my most reliable medication for migraines. Sometimes, I am able to treat my migraines with over-the-counter meds targeted for headaches. But the Relpax is my safety net. However, the severe migraines need something stronger like DHE (dihydroergotamine). It is a painful medication that causes a shitload of side effects. Firstly, it needs to be injected into my thigh or stomach. Secondly, it burns like acid. It hurts so much I often have to give myself a pep talk before injecting myself with the poison, because that is what it is – a poison. The side effects are numerous and I need to take other medications with it to counter the more severe one (like nausea and vomiting). I avoid taking this med. I hate it but at least it works 99% of the time. It also keeps me out of the Emergency Room. Before I was prescribed this medication, I would go to the ER so often that I should have gotten frequent flyer miles.

It has been four weeks since I ran out of Relpax and I am not down to one dose of DHE left in my medicine cabinet. Thanks to Step Therapy (a.k.a., fail-first therapy), I have to prove to the insurance company that I have tried their recommended triptan medications first before they will pay for my lifesaving Relpax. I have been there, done that, and have the t-shirt to prove it. Unfortunately, my insurance company has changed every year since going on Medicare three years ago. That means that every spring I have to play the insurance company’s game which often delays receiving my medication for two or more weeks.

It has been four weeks since my Relpax was used up. I am saving my DHE for the God-awful, kill-me-now migraines that I occasionally get. I am too scared to take it because I will be left with few choices when it is gone. I have left numerous voicemail messages at my doctor’s office, my pharmacy has faxed over numerous requests and still I have not received prior authorization yet. The only meds I have are either the worthless OTC drugs or the my last-ditch medication that literally puts me in a coma for two days. My husband insists that someone be home to keep an eye on me during these two days because I have hurt myself in the past by falling down. This is not a situation anyone should be in.

It has been four weeks and I do not know why it is taking so long. What I do know is that there has been a bill introduced in my state legislature that would eliminate this offensive hurdle I must jump every year. The bill has been languishing for over a year now. I cannot even express the joy the passing of this bill would give me.

It has been four weeks and I am scared. I am scared of getting a monster headache that won’t go away, that will entrench itself and require going to the hospital. I once had a migraine for two years. That scares me…

The FDA Listens to Fibromyalgia Patients

On March 26th, 2014, after yet another snow storm, the FDA held a public hearing for patients, their advocates, and others with interest in the treatment of fibromyalgia. For four hours the doctors who work in the Division of Anesthesia, Analgesia and Addiction Products. They were attentive and asked pointed questions. The discussion focused on the multitude of symptoms patients experience, how well (or not well) medications have helped patients, the non-drug treatment options (including holistic and alternative treatments), the side effects and withdrawal symptoms of medications, and what an ideal medication would look like.

Attendees came from all over the country and even from other countries, like Mexico. Patients opened up their souls to the FDA panel, hoping that our desperation for treatments that actually help will be developed. I heard such heartbreaking stories. We all appear to be in the same boat – even though we can manage our symptoms to a certain degree, it does not mean we are living at a higher quality of life. We are treading water and getting nowhere. Fibromyalgia patients have to change their entire lifestyle in order to cope with the limitations of this illness, and that does not even include all the co-morbid conditions we have. The only people I know who do not have another chronic illness with fibromyalgia are those that doctors simply have not diagnosed yet. Fibromyalgia is an opportunistic illness.

In a few months (after additional comments have been submitted), the FDA will release its report on fibromyalgia based on everyone’s comments and concerns. I have high hopes for this document. It can help doctors understand the illness better. It can help pharmaceutical firms fine tune their research. It can help university researchers conducting their smaller research. It can help medical students learn about this illness. It can help politicians understand the illness so they can pass effective bills. It has the potential to improve the status quo like nothing before it.

Doctor Dilemma

I try very hard to give doctors the benefit of the doubt. I know they are trying their best between keeping up with new research, seeing an astronomical amount of patients per day in such narrow time limits, navigating the ever changing healthcare insurance market. It is not easy and I do not envy their job. However, with that said, I do have a bone to pick with them. When I went to my primary care doctor and then a specialist regarding pain in the joints of my hands and feet this past summer, I was surprised that none of them actually looked at my hands and feet. I even pointed out how my toes are getting so stiff that I cannot even straighten one of my toes. It is permanently curled under. Can anyone explain to me why neither of these doctors examined my toe? I was sent for x-rays of my hands and feet. Unfortunately, neither the view from above my feet nor the view from the side of my feet actually shows the curl in my toe. So, was I surprised when the radiologist’s report on my feet x-rays showed no anomalies? No. I also am concerned about possibly having a connective tissue disorder. Some of the diagnostic criteria require the doctor to actually exam patients’ nail beds. Research shows that blood tests are not conclusive with only 70% of cases showing positive blood results. I find it quite disturbing that doctors are so rushed that they skip over this. On another doctor’s visit, I was experiencing excruciating, stabbing pain in my side. Because I was at the gynecologist, she only examined my reproductive organs. She did not probe the area in pain at all. She declared my reproductive organs healthy.

What has happened to our healthcare system when doctors wear blinders and do not realize they are doing more harm by neglecting patients? They do not even realize the harm they are doing. Both doctors I saw only wanted to give me prescriptions for opioid painkillers without trying to first figure out what was wrong. This is very disturbing.

Down in the Dumpster

According to statistics recently released by the Center of Disease Control, the number of middle-aged women successfully committing suicide has TRIPLED in the past decade. TRIPLED! How could this happen? My opinion is that women are using more irreversible means than they used to. Men have always had a higher suicide rate than us mere women because they are more likely to use a violent means to their end. Men are more likely to shoot themselves, use illicit drugs for overdose, or use moving vehicles (cars, trains) to do the deed. Women, stereotypically the more passive, tend to slit their wrists (which is really not an effective form of suicide after all) or swallowing pills. The vast variety of medications now available is staggering. We can take our pick and simply overdose on them. Does that mean these drugs should be more restricted or taken off the market completely? NO! It means doctors need to pay more attention to the mental health of their patients. A patient who runs out in tears is a definite warning sign. A patient who leaves the Emergency Room is as much pain as when they walked in is another omen of bad things to come. The most vulnerable time for patients is when they fail to receive adequate care for their severe symptoms (especially chronic pain).

I doubt these patients leave the ER or the doctor’s office thinking, “Hey! Why don’t I show this doctor I mean business and kill myself.” It is not that simple. The CDC estimates that up to 70% of all overdoses are accidental. How could someone possibly kill themselves by accident, right? Image coming home after a frustrating doctor’s appointment. The doctor listens to you complain about the migraine you have had for the past week and gives you a prescription for a new abortive medicine. You are so thrilled you immediately get it filled. But when you take the medicine, you are still in pain a hour later. So you take another pill. You eventually start taking every pill you doctor has ever prescribed you in the hopes that this mother-of-all migraines would simply leave you in peace. By this time, you are groggy and brain fog has set in. You no longer remember what you have taken and how much. What do you think happens next?

In another case, you leave the doctor’s appointment with a script for physical therapy but your back hurts you now. You can’t wait for weeks of PT to help you gradually improve. You want relief now! So you go home and taken a few Tylenol or Aleve. You are still in pain later so you take more. You start off taking 2 or 3 pills at a time. By the end, you are taking a handful at a time but you are in too much pain to monitor what you are doing.

That, my readers, is how someone can accidentally kill themselves without even realizing it until they pass out. It is not a pretty picture.

Access to Pain Medications

On January 25th, 2013, the FDA’s Drug Safety and Risk Management Advisory Committee voted to recommend that the agency move the pain medication hydrocodone from Schedule III to Schedule II. The FDA usually accepts the recommendations committees like this one makes. This change is intended to hinder access to a medication that has a high incidence of abuse and addiction. What could possibly be wrong with more control over a substance that contributes to thousands of deaths and rehab visits per year? However, this seemingly innocent decision does not take into consideration several key issues.

First, millions of Americans take prescription pain medications every year. The majority of them DO NOT abuse these medications. They take them to manage their acute and/or chronic pain. We should not lose sight of this distinction. Why should they be penalized because a few abuse them?

Second, medications on Schedule II are not allowed to have refills. Patients can only get a one-month prescription at a time with up to three separate scripts allowed to be written per visit to the doctor. Patients will need to see their doctors more frequently, which can have financial consequences. Medicare and Medicaid patients are less likely to be able to afford more visits to their doctors, and may even have less access to covered doctors.

Third, medications on Schedule II can only be prescribed by physicians (and dentists, as long as it is related to dental care). Sounds like a good idea, right? But what if the patient lives in a rural area or inner city where there is a shortage of doctors? What if the patient only has access to a Nurse Practitioner? Each state makes their own rules regarding if Nurse Practitioners can write prescriptions for controlled substances. I know that in my area of New Jersey, there was only one pain management doctor accepting Medicaid patients as of a few months ago. One pain specialist for thousands of Medicare patients. Really? What is wrong with this picture?

In my opinion, more states should create and maintain a database containing information on who is receiving medications and how frequently they are filled. This will enable doctors and pharmacies to red flag patients who go from doctor to doctor getting multiple prescriptions for the same medication, who fill their prescriptions too early without a legitimate reason (going on vacation and need refill sooner; lost script). These databases should also allow access across states so addicts and abusers do not simply cross state lines to avoid detection. I know many states are doing this – my home state of New Jersey started one last year. Access to the databases should be limited in order to satisfy HIPPA regulations. For instance, all users must be registered by the state and can only access the information for approved reasons – or face legal ramifications.

Is this the cure-all for abuse and addiction to prescription medications in our country? Hell, no! But we must start somewhere and limiting access to pain medication to patients in pain is not the answer.