psoriasis, Psoriasis Treatments

The Waiting is the Hardest Part: A Reflection on Psoriasis Treatments

About five years ago I wrote about starting a new treatment, Stelara, in The Itch to Beat Psoriasis. I wrote about waiting in a similar fashion last week, also after three weeks of treatment–this time on Tremfya (guselkumab). Yesterday I took my second Tremfya injection, ever hopeful for a good outcome.

I especially recall the story about the July 4th fireworks blowing up after some people waiting for hours. I waited 6 months for Stelara to calm my psoriasis, but to no avail. We both did not get what we waited for. The article helps remind me there are no guarantees with treatments, and that waiting can be a valuable learning process–however painful.

Here is a lightly edited version of that article.

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I hope everyone here in the United States enjoyed the Independence Day holiday week. That evening on the news we heard about a fireworks show gone awry in San Diego. Apparently organizers expected up to a half a million people to attend the show. No doubt many of them waited for hours to see a spectacular evening celebration of loud blasts of popping colors. Instead a technical glitch caused the fireworks on three barges to all go off at once for 15 seconds. Twenty minutes later the crowd dispersed disappointed. I’ve waited hours for a show before, but never had it fizzle out quite like that. Waiting makes the disappointment all that more difficult to accept.

Now that I’ve been on Stelara (Ustekinumab) treatment for three weeks I’m waiting to see how my body and psoriasis respond. For me it’s the first time, and I just don’t know what to expect.

I don’t think I’m all that different from others when I say I don’t like to wait. Maybe I’m a bit extreme when another check-out line at the grocery store moves faster than the one I chose. At a car dealership waiting for my car to be inspected, I want it back the minute I give the service manager my car key.

However, when I’m told that I may need to wait 12 weeks or more to see the full effect of a psoriasis treatment, I can get into those moods where I feel very anxious and antsy. I start wondering: What if I wait months while my psoriasis worsens and side effects become unbearable, like I’ve done so many times in the past? What if I never find another treatment that manages my condition? What if after all the waiting, lab tests, stress, doctor appointments, etc., it just fizzles out like those fireworks in San Diego? I don’t want to wait all these weeks to find disappointment in the end.

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Take a few deep breaths. Go for a walk. Pray. Read a book. Talk to a friend. Write. Challenge negative, pessimistic thoughts. Rest.

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So far I don’t see any improvement in my condition, nor have I experienced any major side effects. I’m still managing my condition fairly well with a lower dose of the medications I used before I started Stelara. Those anxious thoughts come and go, and they’ve lessened in intensity and frequency as the days go by. I’ve been down this road of trying new treatments before, and I will no doubt need to travel down it again. It helps to practice those relaxation and de-stressing techniques I’ve learned over the years. Take a few deep breaths. Go for a walk. Pray. Read a book. Talk to a friend. Write. Challenge negative, pessimistic thoughts. Rest.

But without a doubt, when it comes to trying any new psoriasis treatment, the waiting is the hardest part.

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But those who hope in the Lord
    will renew their strength.
They will soar on wings like eagles;
    they will run and not grow weary,
    they will walk and not be faint.

(Isaiah 40:31)