psoriasis, Psoriasis Treatments

9 Weeks Done with Otezla. Keep Going?

Note: below includes a picture of the current condition of my psoriasis on my back and arms. 

I’m entering the time when I expect to see more results from Otezla at two months. I started this new-to-me medication on May 15th for my psoriasis, and hopefully eczema. Unfortunately, instead of improving, I feel more and more inflammation on my skin than I have in a long time.

I had a great exchange with my dermatologist about Otezla. His response when I mentioned Otezla in the conversation?

🙄

I’ve known all along it’s not his favorite medication. Still, I’m hoping that it kicks in soon so I don’t have to switch medications again.

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My lower back and upper arms are particularly broken out as I taper off from cyclosporine and enter my 3rd month on Otezla.

Tapering Cyclosporine

I’m not sure how much to temper my expectations since I also started tapering from Neoral (cyclosporine).

Neoral is a strong immunosuppressor. So, I’m not surprised it works so well for both conditions. I wouldn’t say I’m addicted to it, although I do like how much it keeps both psoriasis and eczema under control with relatively few noticable side effects. It’s hard to stop taking it for that reason.

This drug scares a lot of people, rightly so, as it comes with a long list of advserse effects, including kidney damage and hypertension. My body, though. tolerates it well. I’ve taken cyclosporine off and on for some years. The dermatologists allow me to go back on it after breaks partly because my labs come back mostly normal each time and it works for me. I’m sad to see it go.

Red Light, Green Light?

Stopping Otezla is also a difficult decision, but for another reason. What if it’s just days or a couple weeks away from reducing all this inflammation? I suffered the side effects for weeks and only recently do I feel they are not so severe. What if I persevered through all that insomnia, diarrhea, headache, and lost productivity for nothing?

If I don’t start something else soon, though, I could be covered in redness in a matter of weeks. If I do start another new medication, such as guselkumab that was FDA approved days ago, will that one work? How long might it take?

I’m not sure if I should give Otezla the red light or green light–even if only for a few more weeks.

It’s time to message my dermatologist again to see what he thinks I should do next if my condition doesn’t improve soon–although I already know what he thinks of Otezla. 🙄

 

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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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