I haven't seen it mentioned, but seemingly today is Bob Dylan's birthday ... his 80th (!).

Timelies all!

Another bad day with Mr. S. Gary had to pick him up early from school because he just couldn't settle down. Of course, the fact that he came in to our room around 6(alarm is set for 6:30) and was acting up then should have been a clue how things would be.

It's Natter, right? OT okay? Okay. I just checked Apocalypse, and glanced at the header "Birth, death, illness, new job, vacation.." and a ghost from the past came charging to the forefront of my brane: "Man, woman, birth, death, infinity." Sam Jaffe and a piece of chalk, drawing each symbol at the opening credits of...dun da da duuunnn! Ben Casey. What was I, seven? Mom thought he was dreamy (so was Dr. Kildare) and never missed an episode. Why, ghosts of the past? Why? I have my own fannish memories to manage.

Crossposted Sheryl. I'm sorry Mr. S gets in his own way. You and G are heroes, every day.

Beverly, it's funny when something pushes a long-forgotten memory button.

Sheryl, I'm sorry you, Gary, and Mr. S had a bad day. May today be much better.

Well, C had his (original drug) Remicade infusion, yesterday. He started going by himself some time during the pandemic, but I decided to go with him, just in case. (He's still treated at a pediatric facility, so they allow patients to keep a family member with them.)

The infusion went well, and there weren't any attempts to get us to sign a waiver. Our clinical access manager (who works at a different site) must have gotten the infusion center staff up to speed.

However — the petechiae, which had responded to treatment and previously resolved — had already roared back in their ugly red glory, when he took off his compression socks at 10:30pm. Dang. It.

We knew there was a chance that if Inflectra triggered the vasculitis, Remicade could too. I was surprised it did it so, so very quickly. I'm trying not to let myself feel defeated.

I just don't know what this means for his Crohn's treatment going forward. I would imagine this rules out the infliximab biologic (Remicade) and the infliximab biosimilars (Inflectra, and the others), which are the drugs of choice for his severe disease type (that comes with the bonus of fistulae and strictures). What I'm afraid of is that it could rule out all anti-TNF drugs, which are the Crohn's treatment of choice at the moment.

I emailed photos and a brief message to his gastroenterologist and dermatologist last night, so today I wait, while C is off to start his summer internship.

We knew there was a chance that if Inflectra triggered the vasculitis, Remicade could too. I was surprised it did it so, so very quickly. I'm trying not to let myself feel defeated.

Cindy, that is so frustrating. I'm sorry treatment is getting complicated for C.

What I'm afraid of is that it could rule out all anti-TNF drugs, which are the Crohn's treatment of choice at the moment.

Off the top of my head, Stelara (ustekinumab) could be an option -- it's an interleukin blocker, rather than an anti-TNF drug.

Thank you, Teppy. I had it in my head that all of the -mab drugs were anti-TNFs. That's good to know.

The good news is, I reviewed his the results of blood and urinalysis labs that they did yesterday, on line through the hospital's patient portal. They helpfully include the reference range of most things for which they test.

For everything where a reference range was provided, his results were within that reference range (i.e. they were normal). That means that he's going through this at a time where he seems to be in pretty good shape otherwise. He's even got 5 or 10 extra pounds on him (two years ago, his b.m.i. was between 15 and 16, so 10 pounds of cushion is a blessing in his case).

Thank you, Teppy. I had it in my head that all of the -mab drugs were anti-TNFs. That's good to know.

I thought they were, too, but thanks to the combination of Tim's RA, Covid, and my job, I've read a lot about immunosuppressants.

For everything where a reference range was provided, his results were within that reference range (i.e. they were normal). That means that he's going through this at a time where he seems to be in pretty good shape otherwise.

That also means that the petechiae haven't affected his RBC count or platelet count, which is good news.

Right. In fact, his platelet count has (over the past year or so) run just under the lower number of the reference range (which his doctors knew, but weren't concerned about), but this time, it was right within it.

Of course, the petechiae were gone when they did yesterday's blood draw (just prior to the infusion). They came back in a just a few hours.

I've been sending his healthcare team pictures of his feet as they got better, so I sent ones last night with the new/returned spots, so they can see the difference.

Hey Cindy, I was just thinking about you, listening to the Attorney General on the radio. If you have more issues with the insurance company, definitely call her office -- she has people to help with that stuff!

I'm sorry Mr. S gets in his own way. You and G are heroes, every day.

What Beverly said. I'm sorry it is so frustrating and exhausting.

Also, very sorry it is so frustrating and exhausting for you and your son, Cindy.

My current life is a series of doctor visits, and not even for my job! So far I have appointments 5/26, 6/1, 6/4, 6/8, and 6/11 for various parts of my body. Sheesh. Looks like seizure meds at least for a while. They put me on one they promise won't make me flaky, so we'll see. Changing to Keto diet as the Neuro doc says it would be a good thing for me. Also taking the stupid statins because all the docs say yes my Cholesterol will drop like a rock when I lose weight, but best case is it takes a year for that to happen. Also looking at various tests and surgery for my annoying uterus. Fun times! Hoping to get it all done before end of June so I can go north. Doctor says no problem with me driving when I am ready to go. Bottom line, stuff not working like it should is unacceptable so doing whatever to fix it.