Just last evening I got back on the medication that should have been filled January 4th, 2015.  On January 9th, I received a modification approval through PRIUM quoting reasons for denial using the California MTUS.  Two of the medications were available for pick up on Monday January 19th. One was a modification and reduction of Duloxetine, the other an Anti-Seizure.  Both of these medications warn that patients should not abruptly stop them. Cymbalta/Duloxetine withdrawal was so bad that I couldn’t see straight, literally. I saw lights flashing before my eyes, instability, rapid heart rate, a rise and fall in blood pressure and I heard sounds in my ears, head? I felt as if I was dissociating from myself. Bouncing in and out of my entire being. I only take one actual pain medication. On the 4th when they all should have been filled. I was still okay there. On the 8th, I had a Lumbar Sympathetic Block that seemingly failed due to the Duloxetine withdrawal state I was already in. I was already off the Anti Seizure as well. I removed my patch on time 3 days later. I knew I was heading into another withdrawal. This medication was approved on the 9th also. It is a partial agonist and partial antagonist.  It was still not made available to me. None of them were. 2 of the medications will not be filled at all, anymore. At this time I am coming off another that helped me greatly over the years, but which I will no longer get.  In addition Lidoderm will no longer be approved. It has not been easy.  Last night my patch, the lowest dose of its type was finally put back on.

I know what Lidoderm was originally classified for, yet it seems a little odd to take away a patch that eases nerve pain in targeted areas. Especially when the indications for Shingles is post use and not during break out.

Cost, I am sure!

What is important to point out here is that if the insurance or adjuster has an idea that medication will not be filled for any reason notify the patient or provider before hand.  Give opportunity to properly reduce to avoid side effects. I could have seized! I may have and just don’t know it. Nausea, vomiting, dehydration from not being able to keep liquid or food in was also most unpleasant.  Edema, myoclonic jerks were in an uproar. I had respiratory depression and ended up with flu and cold like symptoms which still exist. I couldn’t lay down and I couldn’t use my Auto Servo Ventilator during the worse of it because of its unique ability to force me to breathe. I coughed uncontrollably. My chest is still heavy.

I do not mean to place myself in another category than other’s on Worker’s Compensation. However, my claim is closed with lifetime medical. My rating above 70 percent was issued in 2008. So how do you determine who is entitled to what and when? Or are none of us entitled at all? New claims, old claims, open claims? We seem to be at the mercy of someone who holds our lives in their hands. I seriously want to learn more! I would appreciate honest answers, but I don’t expect a single one.

We should not have to go through this because someone somewhere is sloppy in their own duties. So what do we do? What are all the patients who are being effected by similar issues suppose to do? Every time I’m denied for a procedure it’s overturned and approved by a medical professional. Why is all the money spent to deny and delay instead of treat in the first place? You speak of high cost in the Work Comp System, oh yes, I agree! While our awards are sitting in an investment account, paid out in bi weekly portions, you get the interest we never see. And then some of you show us your new multi-million dollar buildings and all we want is access to care.  If I had gone to the hospital it would have been initially assumed I was an addict drug seeking. I already know this because this is the position many of you have placed us in.  An immediate assumption, no presumption, no fact or basis for the pre judgement.

Discontinuation of Treatment with Cymbalta

Discontinuation symptoms have been systematically evaluated in patients taking Cymbalta. Following abrupt or tapered discontinuation in adult placebo-controlled clinical trials, the following symptoms occurred at 1% or greater and at a significantly higher rate in Cymbalta-treated patients compared to those discontinuing from placebo: dizziness, headache, nausea, diarrhea, paresthesia, irritability, vomiting, insomnia, anxiety, hyperhidrosis, and fatigue.

During marketing of other SSRIs and SNRIs (serotonin and norepinephrine reuptake inhibitors), there have been spontaneous reports of adverse events occurring upon discontinuation of these drugs, particularly when abrupt, including the following: dysphoric mood, irritability, agitation, dizziness, sensory disturbances (e.g., paresthesias such as electric shock sensations), anxiety, confusion, headache, lethargy, emotional lability, insomnia, hypomania, tinnitus, and seizures. Although these events are generally self-limiting, some have been reported to be severe.

Patients should be monitored for these symptoms when discontinuing treatment with Cymbalta. A gradual reduction in the dose rather than abrupt cessation is recommended whenever possible. If intolerable symptoms occur following a decrease in the dose or upon discontinuation of treatment, then resuming the previously prescribed dose may be considered. Subsequently, the physician may continue decreasing the dose but at a more gradual rate [see Dosage and Administration (2.7)].  Indications and Usage for Cymbalta ~Drugs.com

What is also interesting is that while both my provider and I was told by my Pharmacist that my Rx’s were put into the inactive file and that there was nothing they could do, when the first 2 were picked up on the 19th, the info on the bottles are back dated to the 15th and 16th. That’s wrong! That is not when they were filled. I have kept the receipt/dated of when they were picked up.

I will not name the Pharmacy as I have always had a great relationship with them. So while I continue to withdrawal from one medication, and try to re stabilize from those that had been removed, modified, approved and denied, I can’t help but wonder when the solution is coming to fix a broken system that doesn’t only affect me but millions of injured workers through the States.

As the prescription drug epidemic continues to fuel, let me also mention that slam dunking people off medication has them consider alternatives they would have never considered before.

You make some people become the person they never were. Before you jump to conclusions I beat this! I am beating it! I did not turn to alcohol, I didn’t seek out pills, I did not do what you could have pushed me into.  Suicide increases more and more each day and will become the next epidemic. No one cares to see that part. No one cares to listen enough. Even those that reach out are left hopeless. This isn’t just about Work Comp it’s about access to care in the chronically ill intractable pain patient.  If treatment was offered early, progression of injuries, disease and pain could be controlled instead of becoming out of hand.  Some people with diagnosis’ like mine would even have the chance at remission! Wouldn’t that save billions of dollars?

So I have to wonder if anyone really wants to change anything at all.

We’re not victims, I play an active role in my own pain care. My physicians are just another tool in my tool box of modalities, spirituality and assistance to help me survive and have some semblance of life.

So what do we do, and how do we do it?

I’m all ears.

~Twinkle VanFleet,

Advocacy,  Power of Pain Foundation