I had my after-colonoscopy follow-up appointment. I was anxious to talk with my doctor because for the last three weeks I have been going downhill pretty steady. (I talk about it in my November health update.)
Dr. Weber said the biopsies done during the colonoscopy still show colitis. (Duh.) He does want me to go back on prednisone (yea!) but re-emphasized that I cannot stay on it forever. He wants me to finish my current budesonide prescription before going on the prednisone, but I still have around three weeks worth of that medicine! So I've decided I'll continue for one more week, but if I continue to go downhill, I'll start the prednisone then.
When I do go back on the prednisone, he wants
me to start back on four pills, or 40 mg. That's the dosage I was
originally put on back at the end of last January when I was in really bad shape. I don't think I need to go on that heavy of a dose. So I
think I'll start at two pills a day and see how I feel. The last time I
went back on prednisone, I was bleeding pretty bad, going to the
bathroom a lot with diarrhea, and my stomach hurt all the time. I took
two pills a day, and after only two days, I was able to go on a mile-long
walk with my husband and dog. I know you're supposed to follow your
doctor's instructions, but I've also learned that you have to listen to
your body and that little voice in your head. Besides, if I go on four
pills I would have to self-isolate again, as in no going to the store,
no church, no being around people, including family members, and
especially not children. And, well, we do have Christmas coming right
up.
He also wants to start me on a medicine that is brand new. It
is called Rinvoq (upadacitinib) and was FDA approved for ulcerative
colitis only in March 2022. It is a pill and you only take one a day.
But it is so new that some insurance companies are not paying for it
yet. (It is mega-expensive, like so many of these UC medicines are, but especially because it is a new medicine.) My doctor said he
needs to contact our insurance company and wrestle with them about it.
One thing the insurance company may consider is I've tried multiple
other medicines and they haven't worked. A definite downside to Rinvoq
is it can take up to three months to work!
The doctor never came
out and said it, but I got the impression he is getting a little
concerned because none of the long-term maintenance medicines I've taken so far have worked.
My next appointment is in March, and if this Rinvoq doesn't work, I'm
pretty sure he'll put me on one of the injection medicines like Humira
or Stelara.
Once again we are in waiting mode. At least I got the okay to go back on Prednisone for awhile.
Next Update: The "Step" Dragon Rears Its Ugly Head
Previous Update: November 2022, Colonoscopy is Finished, Ended, Complete, DONE!
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