Here's my podcast episode with an overview of EDS and my & SD's (Laura, in the episode, but prefers SD these days) tips on living with EDS

sicktipsandtricks.wordpress.com/2018/05/31/e...

I appreciate that very much!

I do, in fact, see several very recent posts in that hashtag!

I would have known what hashtags to use on xitter, but I've not had the mental bandwidth to rebuild my network as actively here or on other socials

And yes, I'm posting some variation of this thread on a few different socials, because I want as wide a pool of potential responses as I can get. 7/7

My prior regimen was tylenol 650mg, benadryl 50mg, and ativan 1mg as pre-meds, then right at the start of running the IVIG I'd get a dose of meperidine 12.5mg, and then another of the same about halfway through. Yes, I was loopy af by the end of it, but I almost never had breakthrough reactions. /6

He has come up with the idea of using tramadol and clonidine to try and control the rigors. I'm nervous, but I desperately need to restart my infusions, so I'm hoping someone out there can give me some personal anecdata about how these drugs work for controlling the reactions. /5

My care team decided I should see a new immunologist (previously had been seeing hematology for my infusions), and while this guy seems very competent, he admits he's got no experience with meperidine (which is still on back order until at least October, anyway).

(I talked abt this a bit in May.)/4

My rigors reactions are particularly awful, and I have Ehlers-Danlos Syndrome to boot, so when I shake that violently I quite literally shake my joints apart into multiple traumatic dislocations. /3

I've been receiving IVIG every 4 weeks for the last almost 13 years, until May of this year when my infusion center informed me that there was a nationwide shortage of meperidine (Demerol) and that they couldn't give it to me without it. /2

I have Slack, I just only remember to open it every 3.8 months