We gotta go to the crappy town where I'm the hero!

Wash ,'Jaynestown'


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.


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.


Theodosia - May 25, 2021 10:06:36 am PDT #6664 of 30000
'we all walk this earth feeling we are frauds. The trick is to be grateful and hope the caper doesn't end any time soon"

We had a groundhog the other week. It would be too cool to have a nonpoisonous snake, though.


Topic!Cindy - May 25, 2021 10:12:39 am PDT #6665 of 30000
What is even happening?

Gastro called. Anti-TNF meds are probably off the table. He wants to confer with other gastros, check literature, follow up with the derm, etc., before deciding what treatment comes next.

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!

Thank you, Jesse.

That's a whole lot, Laura.

black snake of unknown size

I'M SURE THAT'S PERFECTLY FINE STEPH