Update: Remicade, Cystic Acne, Enlarged Spleen, Kineret
- 9-2 infusion went smoothly. Increased dosage of Remicade; no prednisone since it was making me more miserable and not doing enough for me anyway. Was in quite a bit of pain, BP was weird today, but got in a few hours of sleep thanks to the Benadryl— always a positive.
- Broke out with more cystic acne after the infusion despite no steroids. After doing some research, there have been studies citing cystic acne as a less common side effect of Remicade. For those of you whose doctors are not aware of those studies or insist Remicade is not causing it, I’ll post those links later.
- Enlarged spleen, not just inflammation around the spleen. It was only a matter of time, but annoying since it is so painful and keeps me from walking very far.
- Liver enzyme issues are due to Remicade, not pain medication.
- Discontinuing Remicade after the next infusion since it’s just not working (unless it randomly starts making a huge difference within the next month) and switching to daily injections of Kineret.
- The good being that this medication is something other than an Anti-TNF; the bad being the daily injecting bit. But autoimmune is one big game of trade offs and trial and error, so fingers crossed that Kineret will be the right medication.
- Genetic mutation associated with a condition I will write about later, but not directly correlated with clinical disease because the mutation is so rare. Like I’ve said before, I am the queen of rare. No conclusions as to what this means, but validation is great to have.
- 10 points for Dr. S for being thorough and listening (not just hearing) to my input. I always leave that office feeling reassured with whatever plan has been put together. I’m not afraid to ask about a medication or test, and never feel shamed or judged for having an opinion.
Still in my post-infusion haze and plan on sleeping for as long as possible. Muscle relaxers and pain meds down, dog cuddled up next to me, and don’t plan on blogging for a day or two, so more queued posts ahead :)