38: My Experience on Olumiant

It goes without saying that the wait for Olumiant to finally come into existence (17 years in my case) was nothing short of an exercise in patience. And then to actually get it, jumping through hoop after insurance-created hoop, was nothing short of a miracle. My hopes were so high and I’ve given it my best shot, and will continue to do so, but alas, I have to say that the experience taking it hasn’t outweighed the heavy lifting I had to do to obtain it.

As I mentioned in my YouTube video on this topic, I started a new part-time job right around the time that I began Olumiant. Over about three weeks time, as I was rushing to my new job, then rushing home to work my other home-based part-time job, I was running ragged. I thought the racing heartbeat, the involuntary muscle tightness, shortness of breath, difficulty concentrating, weakened memory, indeed many symptoms related to anxiety, were the result of having more on my plate than I was used to. Mind you, I was squishing a weeks’ worth of work into three days’ time, plus working on a demo/renovation project and squeezing exercise and rest in when I could, so it stands to reason the symptoms I felt had everything to do with this nutso schedule.

However, after about three weeks I hosted a support group meeting and was asked by a participant to share my experiences on Olumiant. She had begun taking it when it first came to market in June and also had a few life changes coincide. Swapping notes with her gave me the time to connect the dots and it was then that I thought Olumiant might be at the root of my difficulties.

So, I did an experiment. I stopped taking Olumiant for three days, working my way through a splitting headache. By Day 3 I felt like my old self, not anxious or angry or harried, just present. It took a while to get in touch with my doctor but she ultimately suggested that I could try taking 2mg instead of the prescribed 4mg, which I did to the same effect. I broke the pills into quarters and even on 1mg per day, after about a week the tightness and heart palpitations returned. Sigh.

However, I’m nothing if not persistent! In early 2023 I have a follow-up appointment with my dermatologist to discuss my treatment. By that time I hope that one of the two new, almost-FDA-approved medications for alopecia will be available. In the meantime I’ll experiment more with the 1mg per day dosage. I figure I can try one week on the medication and then take a week off and see how I feel. Then again, I might also just forget the whole thing. I really like feeling like me more than I do feeling like Animal from the Muppets. You can count on me letting you know the latest as it develops.

Stay tuned!


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s