My biggest fear is another stroke… One was enough and I’m still paying the price. The only way to avoid that is to take blood thinners That as some obvious problems. I can’t do spinal injections, I cant take NSAIDS etc. So Rheumie is trying to referee a three way discussion between Cardio, Gastro and Neuro surgery. There is a heart procedure where they install a basket to catch stroke causing blood clots. Problem is my cardio was on the FDA commitee for th the thing and voted against approval. Neuro figures of they just fixed the ankylosos in my spine, I should be able to get by with tylenol for awhile. Gastro says no as my liver numbers from 10 years of meds aren’t getting any better. Rheumie is waiting for the first flinch lol.
You prolly had PsA symptoms and didn’t know it either (say like a bit of acne not on the cheeks etc)
Yeah, sometimes it feels a bit like a game of pass the parcel - except we’re the parcel! Glad your Rheumy is actively refereeing- definitely a keeper.
Do they have a longevity on those baskets? Or are they a last resort? (Mesh implants of any type have a pretty bad rep in Australia for causing problems down the track). And can they be easily reversed?
I take it you’re out of TNF or other biologics they can try? Obviously getting the PSA under control is going to cut the stroke risk too (I know you know that, but for others reading too).
Too many questions! No need to answer them all as I’m sure I’m not going to come up with a solution to something so complicated, so I’m glad you’ve got a team looking at it.
You may well be right about my PSA and early symptoms - whatever I had as a kid was pretty well dismissed unless it was gonna kill me (my fatigue in the months before the gut episode was just laziness lol). I wouldn’t even remember!
Getting along well with my biologic. You hit the nail on the head about the mesh. It’s in yet another trial in Aus. Personally I would have voted against it myself. It was approved with “strict” eligibility requirements which basically in the USA means if it a profit center, someone somewhere will sign off… I’m not that desperate yet…
Just an update - have been given referral to a new Rheumy my gastro works well with. Hopefully this means he is a lot less conservative than my old one, but bring in Australia we’ll see.
Meanwhile, at last resort I’m on steroids for a little bit. Oh well, they have their place. I might get a day or two of feeling good before the irrits set in, and then I have to spend the next 3 weeks withdrawing from them . Hopefully at the least I’ll be able to generate some more work for my little business, get back to work a bit, and feel a little less financially precarious.
. Hopefully at the least I’ll be able to generate some more work for my little business, get back to work a bit, and feel a little less financially precarious.