denverpilot
Tied Down
I suppose it’s time for an update.
Neuro symptoms started very very slowly going the negative direction after the end of the steroid treatment.
Other side effects have waned nearly completely from the steroids. Still checking blood glucose but it’s completely normal behavior from what I’m seeing. Been off the diabetes drug months now.
So, the likelihood I’m in the 40% who need a immune suppressive maintenance drug plus or minus a light dose of steroids appears likely.
Going to (finally) go see the nice folks at Mayo again in April. They were slammed in March (especially the neurologist) so schedule shuffling was done and we finally got to a schedule everybody liked.
Some insurance paperwork silliness currently ongoing. What’s new. Change of company managing the plan but no change to the plan itself, just a new pile of computer database checkboxes run by non-medical people to check off to make the new bean counters happy.
Saw some mild signs of adrenal issues coming off the steroids. Also very common. Will see if they want to do the challenge tests while I’m visiting MN. Also would like them to get off the dime and decide or test the apnea thing and get that over with one way or another.
Between the diabetic reaction to the steroids and just eating better at home during Covid I’ve lost 42 lbs. I have no real complaints about that.
Good stuff: My lower back hurts at times. Why good? It was numb for a year. Still walkin’.
Bad stuff: My lower back hurts. LOL. All Neuro symptoms that nearly disappeared on high steroids are all very very slowly creeping back. I assume they’ll find spinal inflammation increased since the last imagery. Since we have a gap in the imagery it may have been increasing at the “wow that’s a lot better stage” actually. Hard to say.
My best guess is we’ll discuss that things are slipping, find evidence that sarc didn’t want to go into full “remission” and we’ll do round two of steroids and then a quicker switch to a designer drug like methotrexate like the neuro said a year ago. She’s pretty sharp. She said two years...
Which leads to my “duh” moment.
How do you figure out if a sarcoidosis patient is acute and one round of steroids knocks it down forever / years?
Take them off the drug and see if they go backward.
Duhhhhh.
I hadn’t thought of it that way, of course.
So while I was mentally prepped for a lifetime treatment, I forgot how you figure that out. Ha. Yup. Have to go a bit backward to find out.
So... likely in for a slightly tweaked new set of treatment orders and another year of messing around. But I’ll take it if we can get back to how it was doing thru about say... Oct/Nov?
Round two... ding ding. And the joy of new paperwork to mark the ringing of that bell. LOL.
Not super looking forward to high steroids again if they need a round of that to start this process. The side effects are a pain in the butt. But it is what it is. Neuro still gets priority over the side effects. Well they try to balance it but it takes some time to figure it out.
Traipsing off to Minnesota again. Should be a little warmer there this time.
Other oddities I’ll be having discussions about during my annual... LOL... left side flank pain mostly at night. 90% of us sarc weirdos don’t process Vitamin D correctly so the stupid calcium supplements may have started kidney stones, or the adrenal system may be still totally ticked at the prednisone, or lord only knows what.
So I’m sure the vampires at Mayo will want lots of blood. Ha.
Crepitus. It’s way better off the steroids by a long shot — but holy cow do I crackle like a bowl of rice crispies still.
General tightness. Too many places to describe unless you’re a doc. LOL. Again, yay steroids.
Unless the paperwork goes massively haywire, I get my frequent flyer miles for another brain to hips MRI tube ride, another chest CT, and another pulmonary function test and then we see what other amusement rides Mayo books for me during my fun-filled stay at medical Disney. Ha.
Oh and the airplane got fixed. Finally. Leaking fuel strainer seal. Yay. And work is... well beyond crazy. Bit it’s nice to stay busy. I guess. Everything feels like a tad too much drama so that hints my adrenal system isn’t operating at full tilt. LOL. That or all this stuff has changed my perspective. Probably both!
Neuro symptoms started very very slowly going the negative direction after the end of the steroid treatment.
Other side effects have waned nearly completely from the steroids. Still checking blood glucose but it’s completely normal behavior from what I’m seeing. Been off the diabetes drug months now.
So, the likelihood I’m in the 40% who need a immune suppressive maintenance drug plus or minus a light dose of steroids appears likely.
Going to (finally) go see the nice folks at Mayo again in April. They were slammed in March (especially the neurologist) so schedule shuffling was done and we finally got to a schedule everybody liked.
Some insurance paperwork silliness currently ongoing. What’s new. Change of company managing the plan but no change to the plan itself, just a new pile of computer database checkboxes run by non-medical people to check off to make the new bean counters happy.
Saw some mild signs of adrenal issues coming off the steroids. Also very common. Will see if they want to do the challenge tests while I’m visiting MN. Also would like them to get off the dime and decide or test the apnea thing and get that over with one way or another.
Between the diabetic reaction to the steroids and just eating better at home during Covid I’ve lost 42 lbs. I have no real complaints about that.
Good stuff: My lower back hurts at times. Why good? It was numb for a year. Still walkin’.
Bad stuff: My lower back hurts. LOL. All Neuro symptoms that nearly disappeared on high steroids are all very very slowly creeping back. I assume they’ll find spinal inflammation increased since the last imagery. Since we have a gap in the imagery it may have been increasing at the “wow that’s a lot better stage” actually. Hard to say.
My best guess is we’ll discuss that things are slipping, find evidence that sarc didn’t want to go into full “remission” and we’ll do round two of steroids and then a quicker switch to a designer drug like methotrexate like the neuro said a year ago. She’s pretty sharp. She said two years...
Which leads to my “duh” moment.
How do you figure out if a sarcoidosis patient is acute and one round of steroids knocks it down forever / years?
Take them off the drug and see if they go backward.
Duhhhhh.
I hadn’t thought of it that way, of course.
So while I was mentally prepped for a lifetime treatment, I forgot how you figure that out. Ha. Yup. Have to go a bit backward to find out.
So... likely in for a slightly tweaked new set of treatment orders and another year of messing around. But I’ll take it if we can get back to how it was doing thru about say... Oct/Nov?
Round two... ding ding. And the joy of new paperwork to mark the ringing of that bell. LOL.
Not super looking forward to high steroids again if they need a round of that to start this process. The side effects are a pain in the butt. But it is what it is. Neuro still gets priority over the side effects. Well they try to balance it but it takes some time to figure it out.
Traipsing off to Minnesota again. Should be a little warmer there this time.
Other oddities I’ll be having discussions about during my annual... LOL... left side flank pain mostly at night. 90% of us sarc weirdos don’t process Vitamin D correctly so the stupid calcium supplements may have started kidney stones, or the adrenal system may be still totally ticked at the prednisone, or lord only knows what.
So I’m sure the vampires at Mayo will want lots of blood. Ha.
Crepitus. It’s way better off the steroids by a long shot — but holy cow do I crackle like a bowl of rice crispies still.
General tightness. Too many places to describe unless you’re a doc. LOL. Again, yay steroids.
Unless the paperwork goes massively haywire, I get my frequent flyer miles for another brain to hips MRI tube ride, another chest CT, and another pulmonary function test and then we see what other amusement rides Mayo books for me during my fun-filled stay at medical Disney. Ha.
Oh and the airplane got fixed. Finally. Leaking fuel strainer seal. Yay. And work is... well beyond crazy. Bit it’s nice to stay busy. I guess. Everything feels like a tad too much drama so that hints my adrenal system isn’t operating at full tilt. LOL. That or all this stuff has changed my perspective. Probably both!