39: Update on Olumiant’s Side Effects

I spoke with my dermatologist a few weeks ago about the side effects I experienced during the three short weeks I took Olumiant: throat tightness, heart palpitations, feeling tense, etc. She let me know that I’m the only patient for whom she’s ever prescribed Olumiant and was herself unfamiliar with the drug and what to expect. However, a pharmaceutical rep who visited her practice shortly before I met with her and with whom she discussed my experiences, said that the symptoms I shared were supposed to subside after approximately three months on the medication.

This is great news for anyone who’s interested in pursuing that course of action. I’ve also heard from one other person on Olumiant , a member of the support group I run, who has said that she too felt similar (though I would wager not as severe) side effects and, like the drug rep indicated, her symptoms subsided after three months.

Because I let my dermatologist know that I was nervous about the heart palpitations (I mean, who wouldn’t be?) she recommended that I get an EKG to determine my heart’s health. To my knowledge I don’t have a heart condition, but she recommended that for my own peace of mind and to be extra sure that any other JAK inhibitor I take, all of which have warnings about heart health, I get the information.

On a related note, while going through my emails today I came across this invitation for a free webinar from NAAF to share information about JAK inhibitors, side effects and treatment monitoring:

https://www.naaf.org/event/webinar-series-jak-inhibitor-treatment-for-alopecia-areata-understanding-side-effects-and

I encourage you to sign up for the webinar so that you can be as informed and as in-control of your health and treatment as possible.

Thank you for following me on this journey. It’s an exciting time and I look forward to sharing more information with you as it becomes available to me!

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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!

37. Finally, an FDA-Approved Treatment for Alopecia Areata AND How To Get It!

Have you heard the exciting news about Baricitinib, also known as Olumiant, made my Eli Lilly, the first-ever FDA-approved drug for the treament of Alopecia Areata? If you haven’t, a friend of mine sent me this link to the NYT article which you don’t need a subscription to read:

I continue to jump through hoops trying to get a prescription for the drug, but know now after much persistence that one can indeed get the drug if one’s insurance doesn’t have it or won’t cover it. Read on to learn how.

My new dermatologist wasn’t aware of this process, and it took me a few weeks to learn about it. While I did so I followed my doctor’s advice and jumped through my millionth alopecia hoop, this time for the purposes of getting approved for Methotrexate. This drug is apparently used to treat cancer and one I really didn’t want to take. However, my dermatologist thought I could build a case for Baricitinib with my insurance company by “failing first” on Methotrexate, then maybe going onto Rinvoq (used for the treatment of Eczema, which I’ve had all my life but never knew it’s an auto-immune disease) before finally getting approved for Baricitinib.

Not sure about you but I don’t want to be on a drug that’s used to fight cancer. Just doesn’t feel like I’m attracting the right kind of mojo, you know? And I’ve been waiting 17 long years for this moment, and I’m just about done.

So, I went to the website for Baricitinib at olumiant.com and called up the drug reps at Eli Lilly (1-844-658-6426). I spoke with a very nice lady who told me that A: Olumiant is a specialty drug and as such requires that a dermatologist indicate the need for a “formulary exception” or prior authorization when writing a prescription for it, and B: Even if my insurance company doesn’t have Baricitinib/Olumiant on its “list of formularies” (which it doesn’t yet and may not for at least the next six months) or won’t cover its cost, Eli Lilly can provide.

You and your doctor just have to complete the Olumiant Together enrollment form, found here:

(https://www.olumiant.com/assets/pdf/derm_olumiant_enrollment_form_digital.pdf), or visit http://www.olumiant.com, go to “for health care providers” on the left hand side of the site, and click on “Olumiant Together Enrollment Forms.”

I’m told that this form and the “formulary exception” or a prior authorization form submitted to your insurance carrier by your dermatologist are needed to start the support process for Eli Lilly. You can also enroll in their prescription assistance program, a separate application completed easily through the company’s website. The most you would pay per month is $25, or as little as 5$. Go to olumiant.com and on the left-hand side bar look under the “For Consumers” tab and click on “Savings.”

I was told by the Eli Lilly representative that, once all paperwork is complete and received, patients could get authorization for the medication within 24-48 hours.
The reps at Eli Lilly are available from 8 am to 10 pm M-F. Their number again is 1-844-658-6426.

If you’re interested in watching the NAAF-sponsored webinar with Dr. Bret King, one of the primary researchers of alopecia areata at Yale University, discussing Baricitinib, you can find it here: https://www.youtube.com/watch?v=3FgkcgOfja4&ab_channel=NationalAlopeciaAreataFoundation

Best of luck if you decide to go down this new road!

36: Going Wigless in Public

During the summer of 2020 I made a list of topics I thought would be fun/challenging/informative/worthwhile, both for myself and my audience, to create. Over these many months I’ve checked off several of those topics. The last I have yet to embark on are, admittedly, the hardest for me because they require a good stretch of the ol’ comfort zone.

However, last month, even though I didn’t create a video, I was gathering valuable material for one, my latest, about going bald in public. Now, I’m not talking about leaving my wig at home for hours on end while I hike, run errands, visit the vet’s office with my dog, etc. I started small in the yoga class I’ve been attending for the last fifteen years. And I have to say it was pretty wonderful. It felt like a veil was removed in making the conscious choice to just be me.

Of course, there were moments when I worried about what assumptions my fellow yogis made of me, moments when I judged myself negatively for not having hair someone else in class could compliment (as happened at the end), moments when I thought I caught the slightest hint of a wall between myself and the guy practicing next to me. But for my own sanity I have to acknowledge that these realities are in my mind, not actually in the flesh.

I was physically more comfortable, and emotionally OK. Strangely, I felt more like myself, down to my bones, without my wig than I have all these years I’ve been wearing (and suffocating under) one.  And I think I have the yogis to thank for that, at least in part, because they met my gaze when I lifted it, just like it happened before I lost my hair. They held conversation with me, laughed and sweat and meditated on getting out of our physical bodies alongside me. It all felt so normal. I have more to chew on as it relates to this new, astounding iteration of honesty, and I’m looking forward to it. Not since that first class when I shed my head scarf have I gone back to donning a wig, and I may never again.

35: Fun with the Moderna Covid-19 Vaccine

So, on May 15th (a Saturday) after forgetting my vaccination card at home for my second round of the Moderna Covid-19 vaccine, getting scolded by the officer on duty, and allowed to pull up for my shot anyway, I asked the nurse working with me: Would having just come off Prednisone and getting this shot be a bad thing? Not to her knowledge, she advised, so in the stuff went. And, side note, it really hurt! Felt like liquid fire being injected into my left shoulder with a switchblade.

I was attending a birthday party that night, an hour away from my home. I refused wine, not knowing if or when side effects might hit me, and left a little on the early side so as to get home before I might start to feel badly. Given that we’re in warmer weather, it was odd to me, but not unusual, that my feet were cold going to bed that night. But, I just happily tucked my toes under my warm little dog’s body (and he just as happily received them), and cozied up for some rest.

The reality that I my cold feet were an early warning sign of Covid-related symptoms dawned on me at 2:30 Sunday morning. I woke up to a headache and, upon getting out of bed to get a snack, chills from head to toe. Ibuprophen didn’t do much besides make me feel as though I was taking action against the pain. Thankfully, sleep carried me into late-ish morning when I awoke at 7:30, but now with head to toe body aches and pains.

I took more pain reliver, which was about as useful as a hole in my head, and set about the mellow day I had planned at a local plant nursery. Mustering the cognitive energy to visualize a new shade garden, and choose the right plants for it, amounted to a high-intensity workout. Why and how I took my dog for a hike later on is beyond me, but knowing why the trail, frequented by young families for its relative ease, was a killer for me, isn’t.

I think Prednisone was to blame for my adverse reaction. And I was so looking forward to bragging about how my autoimmune disease, and my superhero strength blood cells, saved me from pain and agony. Alas, I watched the latest episode of This Is Us, cried over nothing because I was in so much darn pain, went to bed at 8:15 and slept straight through to 6:30 Monday morning waking as though nothing ever happened the day before.

Not that my experience with Prednisone can be generalized, but I find it interesting that with Covid vaccine Round 1, when I wasn’t on the steroid, I felt nothing like I just described.

If you’re considering getting the vaccine, and are on an immunosuppressant, maybe talk to your prescribing physician about the advisability of going off it for a bit. Be your best self-advocate at any rate, and do what you think is best for your body. I wish I’d listened to my gut and rescheduled my second shot for a few weeks post-Prednisone, but then again if I had where would we be without this newest blog?

To your health. Be well.