Wash: Don't fall asleep now. Sleepiness is weakness of character. Ask anyone. You're acting captain. Know what happens you fall asleep now? Zoe: Jayne slits my throat, and takes over. Wash: That's right. Zoe: And we can't stop it.

'Shindig'


Natter 77: I miss my friends. I miss my enemies. I miss the people I talked to every day.  

Off-topic discussion. Wanna talk about corsets, duct tape, butt kicking, or physics? This is the place. Detailed discussion of any current-season TV must be whitefonted.


Beverly - May 24, 2021 6:11:43 pm PDT #6654 of 30000
Days shrink and grow cold, sunlight through leaves is my song. Winter is long.

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.


Topic!Cindy - May 25, 2021 5:39:20 am PDT #6655 of 30000
What is even happening?

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.


Steph L. - May 25, 2021 5:55:32 am PDT #6656 of 30000
the hardest to learn / was the least complicated

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.


Topic!Cindy - May 25, 2021 6:49:46 am PDT #6657 of 30000
What is even happening?

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).


Steph L. - May 25, 2021 6:56:41 am PDT #6658 of 30000
the hardest to learn / was the least complicated

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.


Topic!Cindy - May 25, 2021 8:32:57 am PDT #6659 of 30000
What is even happening?

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.


Jesse - May 25, 2021 8:58:18 am PDT #6660 of 30000
Sometimes I trip on how happy we could be.

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!


Laura - May 25, 2021 9:04:28 am PDT #6661 of 30000
Our wings are not tired.

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.


DavidS - May 25, 2021 9:20:18 am PDT #6662 of 30000
"Look, son, if it's good enough for Shirley Bassey, it's good enough for you."

Changing to Keto diet as the Neuro doc says it would be a good thing for me.

Happy to share tips and recipes from my high protein/no carb diet.


Steph L. - May 25, 2021 9:41:12 am PDT #6663 of 30000
the hardest to learn / was the least complicated

That *is* a lot of doctoring, Laura, but we want you in tip-top shape!

Our sometimes yard guy is here making our backyard look less like something Indiana Jones might hack his way through and more like a hammock-friendly backyard. Apparently we have cicadas (no shit), spiders (ditto), and a black snake of unknown size.