And… Pivot

Oy. I swear. This disease is such a carnival ride. Once things finally start working or making sense, once you finally get a little comfortable, something jolts you in another direction, and you have to reassess the plan all over again. The twist this time was side effects.

I called this morning to report a few concerning things. My main concern was the headaches. For the past few days, I have had horrendous headaches/migraines that wake me up in the night and keep me up for hours. Just awful ones. I take Tylenol. I take THC. I press my pressure points. All the things. But the headaches persist. At first I wondered if this was cannabis withdrawal, because I wasn’t taking a gummy every day or trying not to if I could help it. Nothing online seemed to indicate that that could be the case. Then I wondered if it was from Prednisone - from tapering down too quickly or something. It seems like a lot of people get headaches from that, but they also get nausea, chills, vomiting, dizziness and a whole slew of other things I wasn’t experiencing. Finally I wondered if it was from the Azathioprine, as that was new. I didn’t really have any idea, so I figured I’d call and let them know just to be safe.

I also read online that when taking immunosuppressant drugs you should tell your doctor about any infections or illnesses you contract. So I told them I had somehow gotten a yeast infection, which is uncommon for me (though evidently common when on Aza). Saturday I was fevered and fatigued so much that I never left my bed. Tori brought me some Monistat 7, though, and that’s been helping tremendously. We also have RSV going around in our home (Cora tested positive for it yesterday as she is the sickest, but it’s super contagious), and this morning my throat hurt. So there’s that. 

I left a message on Cassidy’s voicemail, assuming she’d just pass the message along and let me know if he was concerned at all. Instead, I soon got a call from Dr. Habib himself.

He said the headaches are almost definitely a side effect of the meds - could be from the Prednisone, could be Azathioprine. But it’s likely hypertension, which we want to avoid. (I also have noticeable swelling in my feet and face, which confirms his suspicions.) He thinks I’ve been symptom free of a flare for long enough that we should try again to taper off all meds and see what happens. He wants me to stop taking the Azathioprine today, and he wants me to reduce the Prednisone down to 10mg today and then stop it altogether in a week. 

Eek.

I’m really nervous about all this. The last time I tried to taper off all meds, I kicked back into a flare, and it suuuucked. But I’d LOVE to get off all these crazy meds and feel like myself again. So we’ll try it. Wish me luck - and a happy gut.

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