Category Archives: Psoriasis Treatments

psoriasis, Psoriasis Treatments

So What If My Skin Clears?

This morning I gulped down the first Otezla pill of the third week of treatment. Given the intense side effects from pill one, I consider two weeks and 27 pills a milestone. We’ll celebrate with steaks on the grill for Memorial Day barbeque in a few hours.

First, though, I’ve begun to contemplate an interesting question: what if my skin is clear, but I’m still experiencing all these side effects? Would I still take it?

Adverse Effects versus Effectiveness

I assumed all along that Otezla’s side effects would decrease over time. Others testify to the lessening of diarrhea and headache around week 2 or soon after. Last week, while still challenging, overall I felt better. The headache, wheezing, and stomach upset hit within one hour after taking the pill. But after about five or six hours I feel a bit better rather than those horrible effects lasting the whole twelve hours.

I felt better enough to be more productive at work this week, although at a slower pace with more breaks. Yesterday, I spoke for fifty minutes at church, led a two-hour counseling session for a couple, and attended another couple meetings. I felt a great sense of relief just to make it to the end of the day.

Despite  this progress, if the side effects plateau at the current level and I can’t mitigate the effects some other way, even if my skin shows marked improvement, I’ll probably stop taking the medication.

Out of Sight, Out of Mind

I’ve taken a medication, cyclosporine, off-and-mostly-on for a number of years now. I don’t feel any side effects from my moderate dose. But my blood work tells me at a higher dose my creatinine levels increase, indicating potential damage to my kidneys and kidney function. Also, my blood pressure goes sky high. Since I can’t feel these effects, they are out of sight and mostly out of mind.

Cyclosporine is hands down the most effective medication I’ve taken for my psoriasis. It’s also one of the most toxic. I’m much more willing to take it, though, since I place a high value on my ability to function and be productive–not just live.

Right now with Otezla I can function at about sixty-percent, but otherwise I’m a blob resting on the couch. I still get out to run or walk, but I often feel horrible while working out. If I can’t exercise or eat, then isn’t that negatively impacting my health too?

Either/Or–Forget It

I just might find myself at this crossroads very soon, needing to choose to stay with Otezla while feeling not so great, or to embark on another new medication journey. Cyclosporine is off the table for a while so my kidneys can take a break. Other options could present themselves too.

This either/or option doesn’t fit my preference profile at all. I want to stop feeling adverse side effects, have assurance of little hidden impact on my internal organs, and have it be the most effective treatment possible. I suppose if I found that medication I wouldn’t need to keep searching for a new medication!

So, for at least today, I’m going to stop thinking about it.  Forget it. It’s not a choice before me quite yet. It’s a holiday, and the family will be together with kids home from school. Besides, my head started hurting half way into writing this blog from my first third week dose.

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psoriasis, Psoriasis Treatments

Why I Hate Taking a New Medication

A little over a week ago I received the news that I would receive a somewhat new psoriasis medication, apremilast (Otezla), direct from the manufacturer. At first I felt a sense of relief that the battles with insurance over covering it came to an end. Then I faced the prospect of taking the medication. A feeling of dread overcame me.

I say I’ve tried every psoriasis medication there is to try. Of course, that’s not completely true, especially with some obscure ones left untried, and more coming out all the time. Over the past few years I’d given up on trying the new ones since my current treatment worked fine.

But it’s time to take a break from cyclosporine, which has a long list of side effects and an FDA limit of one year of usage at a time. That means a new medication.

New Medicine, Same Old Story

I have the memory of an elephant when it comes to how well I felt and did on various medications. Methotrexate makes me want to vomit (still). Adalimumab (Humira) gave me horrible eczema rashes (though cleared psoriasis). Soriatane made my palms and soles of my feet peel so painfully I bound them to survive. Narrowband UVB (phototherapy) burned my skin to where I couldn’t put on clothes without feeling pain.

Apremilast is on the list of haven’t tried, might want to because it’s for psoriasis after all, but I’ve heard and read the stories of the side effects. The pharmacist who counseled me over the phone also described patients she knows with GI issues (diarrhea, vomiting, nausea), headache, insomnia, weight loss (yes!), and depression (no!). The list is not comprehensive, but certainly some of the side effects a patient on this new medication might experience.

Every new medication I’ve tried has the list of warnings, side effects, and potential drug interactions and concerns. Do I want to take that medicine? Not on your life. But I pop that pill hoping that I might be the exception—works super well for me without side effects.

I can dream, anyhow. I can be the one to prove my doctor wrong, who reluctantly prescribed it to me, adding, “It’s a horrible medication.”

Every new medicine I’ve taken I’ve had that same thought, but so far it’s the same old story. I’m human, other humans who took this drug felt X and Y, and I’m feeling X and Y times two.

Stopping this Medication. . . Just Kidding

Today I had enough. Enough of feeling horrible with headaches, bloating, wheezing, and inability to focus. Enough is enough. I’m going to stop taking it, at least the morning dose so I can be a productive person again.

Then my dermatologist messaged me to try it for two months. I hadn’t told him I would take a break this morning—how did he know? He went on to say that the noted side effects improve over time for many people.

As ten o’clock rolled around, I stared at the pills thinking, maybe, just maybe, the side effects will get better if I keep going. Don’t give up so early, I told myself. I can fight through the pain, I coached myself. With a sense of reckless abandon, I grabbed my morning coffee and gulped it down.

Why Did I Just Do That?

As I rushed off to work to counsel a university student, all I could think was, “Why did I just do that?” I could feel the headache and nausea coming on within the first thirty minutes. I needed a time machine to turn back the clock an hour, and fast. Unfortunately, I couldn’t find it.

When the student arrived, I asked if he could wait for a few minutes. I needed to go to the bathroom. Ugh. At least this bathroom need didn’t happen when I gave a talk last Friday. But what about tonight when I lead a group meeting, or on Sunday when I speak again?

This is no way to live.

 

I do hate taking a new medication for all kinds of reasons, principally side effects. If this medication doesn’t do much to stop my psoriasis, the temptation toward indulging bitterness and rage might emerge stronger than ever. Another reason to hate the new medication—it might be a lot of cost and pain for little effectiveness and gain.

But still I take the new medication, because maybe, just maybe, this is the one to clear my skin with less overall side effects.

I can dream, anyhow.

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psoriasis, Psoriasis Treatments

The Frustrating Road: Appealing the Insurance Denial

As I wrote in Insurance Request Denied for Otezla, I heard first from my dermatologist of the denial. The next day I received a letter detailing the denial. The crux of their argument for denial is that I’m already taking Enbrel (etanercept), a biologic, and no studies exist to show the efficacy of taking Enbrel and Otezla (apremilast).

I honestly didn’t expect too many studies of people taking Enbrel and Otezla. Otezla is only FDA approved recently. I understand many people with psoriasis would not need to take two high costing medications to treat their condition. Unfortunately, I am that person who needs a combination of therapies to even keep me at the high-level of moderate to low-level of severe. Forget about clearance or near-clearance.

Last week I finally conjured up the courage to call my insurance provider about the Otezla denial. Right away I knew why I procrastinated.

The call did not get off to a good start. She asked me my identifying information, which I gave all except my state. I figured this is a small HMO that is local, so California would be assumed. She told me twice that it was needed to identify me in their records. I felt annoyed already.

I learned quickly that my provider already filed an appeal on my behalf, so the call was essentially useless. I told her that I still wanted my perspective to be heard by the insurance medical reviewer. She told me that my perspective didn’t matter, only whether or not the medications prescribed are medically necessary.

More frustration. Some angry words exchanged. Then silent typing for five minutes.

I felt disoriented during the silence. Was she documenting my upset? Would I be denied insurance later if I pushed too hard for this medication? She assured me that wouldn’t be the case, that she only needed to document what happened on the call.

My condition, I reasoned, needs two medications to overlap. If the old one is stopped too quickly, the new one might not be strong enough to suppress the inevitable flare. I hope to only be on one medication eventually, but that takes time. More typing and silence.

I trust she took down what I wrote for the medical reviewer. But why couldn’t I share my experience and thoughts of my own medical care in the first place? I never did get a straight answer on that question.

Now it’s time to wait some more, up to 30 days. I’m starting to not even want to try this medication if it’s so much trouble!

 

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psoriasis, Psoriasis Treatments

Insurance Request Denied for Otezla

Today I found out that insurance denied my dermatologist’s prescription for Otezla (apremilast). With so many days passing before hearing I assumed the scrip ran into issues. So, I messaged my doctor to find out what happened over the past ten days.  The dermatology office will appeal the denial, which can take up to 30 days–though I’m told that most likely we will hear back earlier.

How do I feel about the insurance denial? I thought I might feel upset and angry, but I mostly shrugged it off. This insurance company, at least the prescription medication provider, is no doubt accomplishing their goal of wearing me down. They are already in my head. As soon as I received the prescription my first thought turned to whether insurance would approve it. I’m saddened that I would think that first.

Besides indifferent and somewhat sad, I feel mostly tired. For a long time, I’ve preached having a good working partnership with health care providers. I practice what I preach. I can talk to my dermatologist just about anytime about anything. We work closely together to decide on my treatment plan. That’s now not the problem.

How do I have a good relationship with the pharmacy benefits company my insurance contracts?

These issues really are new to me the past few years. From the time of my diagnosis until I took this new job in 2014. I was with Kaiser Permanente. I didn’t deal with insurance issues directly—it seemed if the doctor ordered something, I wouldn’t question if I would get it. Phototherapy, biologics, pills, and procedures were all covered.

I’m not looking forward to the next few days. It feels like each time I call I talk to a different person. All the same, I’m building up the courage to make phone calls to the insurance company this week. When they wanted to deny my Enbrel twice a week—claiming a once a week step down protocol that didn’t work for me—I pushed back hard. I overturned that denial with persistence, clear reasoning, and a calm approach.

Praying that I can keep that same calm, figure out what’s going on, and help the process along. I don’t have to have this exact medication. But I do need to feel some security and confidence that I can reasonably have access to what my doctor and I think are best for my psoriasis and health.

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