Maybe it’s permanent. Grounding that is.

Glad to hear about the positive progress! So happy for you.
 
Read up and watched research videos over the weekend.

Good lord no wonder they want me off the steroids as soon as reasonably possible.

Numerous studies indicate even for neuro, heart, and heavy lung involved sarcoidosis patients that extended heavy steroid use causes no good effect on the sarcoidosis and massively bad side effects.

The modern immunosuppressive drugs are usually equally effective and less bad side effects but it’s still common to put non-life-threatening sarcoid patients on prednisone instead.

Doc who did multiple trials including placebo is trying to get the word out to knock it off.

For neuro stuff prednisone is still the go to, and longer and higher dose courses but he says as soon as good effect stops, get the dang patient off of it.

Which... is where we are headed... but it was cool to find real research numbers.

He added that the initial hit of super positive feeling good often “hooks” the patient who then doesn’t want to come off the steroid as the steroid starts pushing things in a negative direction too and a doc can get caught in a “adding to quality of life” dilemma and just leave them on it.

Very good to know. Must get OFF the steroid. Don’t get tricked by that. Go by imagery and actual results in the spinal cord. Symptoms will now go all over the place until the steroid is tapered off. Especially neuro patients.

Being able to find this sort of info on the internet from actual conferences is amazing. At least for those of us who like to dig in and try to understand the challenges the docs are up against.
 
PaulS said:
I think you need to change the title of this post to "Maybe it's NOT permanent,..."
Click to expand...

Haha I like it! Can’t change post titles once they first reply is sent on this software though.

And I doubt I’m getting out of this without some permanent damage anyway. It’s really about how much and what it is.
 
jason said:
I'd have to test. But that might just be there for you since you are a moderator.

Nate, glad things are progressing in a (generally) better direction.
Click to expand...

Oh that’s an interesting point. I think I tried it after this came up and it let me but I wasn’t really paying close attention. One of those I’ll try and report back and then six other emails and phone calls came up. Ha. No biggie!
 
Probably time for an update...

Blood work yesterday. Wow. Literally every “weird” number that was happening at onset is back inside normal ranges.

Labor Day weekend I stopped the diabetic drug. After the steroid step down Sept 1 it was driving glucose too low too fast. I was eating every couple of hours to keep up with it.

I also stopped my statin which was kinda wishful thinking but I’ve been wondering if maybe the wacky liver numbers were a hint that the liver was being affected by the sarcoidosis. Sure enough, while not definitive, all liver numbers are back to normal and cholesterol is “borderline high” without the statin.

A1C is elevated along with calcium and nitrogen but in high normal ranges. The kidneys aren’t enjoying the steroid but are hanging in there!

Won’t have “official” follow up with the GP until next week and still need to forward these numbers on to Mayo, but I’m pretty amazed.

Ahead of the expected imagery in the spine, blood numbers all back to normal, wild ride effect of the diabetic drug over with... Sept has been kind on the medical front. Blood glucose was 89 at time of blood work.

I’m still sensitive to carbs and anything with sugar but over the course of this thing have simply learned what not to eat or in what quantities.

Got other fronts it isn’t being so kind about but hey, it’s 2020... this year has to be insane in some way... perhaps I’ll go into those things later in another post.

Oh yeah. Work has been so busy and I was able to work without neuro pain causing big time outs to rest or recover so much that my overtime got me flipped back to salaried. Ha.

I can easily burn a whole day at a desk now, for better or worse, and have been while working from home for a while now. Been doing that since coming off all the pain meds in March. But medically it’s a great thing.

Right hand isn’t as good as I would like it to be, function is decent but not perfect and the sensory stuff makes it “icky” to touch things lightly with. Still have sensory stuff waist down in the legs but it has eased some. Mostly just feels like continual but not complete numbness.

Took a few more pounds off too. Side effects of eating right.

Would love to get back to PT and maybe some sort of therapy for the hand. They’re still hemming and hawing about that due to the annoying 2020 virus.

Even the dog is off of my meds. LOL. The vet had him on gabapentin for a bit so he was getting my stuff I hadn’t taken. His back issues mellowed out with a month of him lazing around being stoned. He’s down to his anti-inflammatory and monthly knee shots and is cruising around the place.
 
Thanks for the update! I’m glad to see more things are looking up for you! Sending my best wishes your way as you continue to fight this!
 
Good update! I'm not surprised at the ill effects (toxicity) from a drug or two. It's pretty common, sometimes even worse than you mention. The problem comes when a Doctor doesn't drug effects (or has no othe drug option) that whacks out one of the numbers, so they prescribe something to deal with that, which whacks out something else. I know someone who ended up on 10 drugs to try and correct a problem caused by that kind of scenario caused by a single hypertension drug. Got a new doc who tried a different BP drug and was able to eliminate the other 9 drugs. Between docs that don't have time to to find the root cause and the limitations of insurance formularies, I am surprised we don't hear about more issues.
 
denverpilot said:
Probably time for an update...

Blood work yesterday. Wow. Literally every “weird” number that was happening at onset is back inside normal ranges.

Labor Day weekend I stopped the diabetic drug. After the steroid step down Sept 1 it was driving glucose too low too fast. I was eating every couple of hours to keep up with it.

I also stopped my statin which was kinda wishful thinking but I’ve been wondering if maybe the wacky liver numbers were a hint that the liver was being affected by the sarcoidosis. Sure enough, while not definitive, all liver numbers are back to normal and cholesterol is “borderline high” without the statin.

A1C is elevated along with calcium and nitrogen but in high normal ranges. The kidneys aren’t enjoying the steroid but are hanging in there!

Won’t have “official” follow up with the GP until next week and still need to forward these numbers on to Mayo, but I’m pretty amazed.

Ahead of the expected imagery in the spine, blood numbers all back to normal, wild ride effect of the diabetic drug over with... Sept has been kind on the medical front. Blood glucose was 89 at time of blood work.

I’m still sensitive to carbs and anything with sugar but over the course of this thing have simply learned what not to eat or in what quantities.

Got other fronts it isn’t being so kind about but hey, it’s 2020... this year has to be insane in some way... perhaps I’ll go into those things later in another post.

Oh yeah. Work has been so busy and I was able to work without neuro pain causing big time outs to rest or recover so much that my overtime got me flipped back to salaried. Ha.

I can easily burn a whole day at a desk now, for better or worse, and have been while working from home for a while now. Been doing that since coming off all the pain meds in March. But medically it’s a great thing.

Right hand isn’t as good as I would like it to be, function is decent but not perfect and the sensory stuff makes it “icky” to touch things lightly with. Still have sensory stuff waist down in the legs but it has eased some. Mostly just feels like continual but not complete numbness.

Took a few more pounds off too. Side effects of eating right.

Would love to get back to PT and maybe some sort of therapy for the hand. They’re still hemming and hawing about that due to the annoying 2020 virus.

Even the dog is off of my meds. LOL. The vet had him on gabapentin for a bit so he was getting my stuff I hadn’t taken. His back issues mellowed out with a month of him lazing around being stoned. He’s down to his anti-inflammatory and monthly knee shots and is cruising around the place.
Click to expand...

When you were doing PT were you using a machine or was the Physical Therapist manipulating you at all? I ask because there are a number of Virtual PT companies out there now. I know when I pinched a nerve in my neck a few years ago and did PT I mostly did exercises on my own when I went for PT.
 
NHWannabe said:
When you were doing PT were you using a machine or was the Physical Therapist manipulating you at all? I ask because there are a number of Virtual PT companies out there now. I know when I pinched a nerve in my neck a few years ago and did PT I mostly did exercises on my own when I went for PT.
Click to expand...

Both. The PTs were manipulating the arm and hand trying to loosen up the muscles and ligaments and outside nerve bundle running through the shoulder and shoulder blade prior to exercises to keep their strength up. They were also administering the electrical stimulus stuff to keep feeling in the extremities during the worst days of the neuro symptoms.

Basically both of them kept me walking and functioning normally enough I thankfully “made it” to Mayo, only needing a cane. I owe them both a severe debt of gratitude. Especially when insurance started whining I wasn’t getting better. They fought.

Today it’s more of a “I would be recovering faster/better with PT” (exactly what the insurance company would like) but I can do the majority of the work to rebuild muscle and stay active until they can bang on me, probably with some sort of seriously annoying / painful occupational therapy for the hand, which mostly works, it’s just incredibly sensitive and annoying to use.

As Bruce asked once, yeah I can pick up a paperclip off a desk with it. It just feels numb, or stings, or does something else annoying from a sensory standpoint. Once in a while it tremors. And it’s weaker than the other hand.

Both have a bit of “gloved” sensory issues but as mentioned before, they were so bad at one point it took fairly high levels of pain drugs to sven be able to somewhat ignore it.

Today I type all day for work with the left hand and one finger of the right, mostly because the right doesn’t feel “nice” lightly touching anything. It’s actually way better if I just grab something with some force. Holding a steering wheel for instance is mildly annoying but nothing like if you lightly brush the fingertips. Eww. Nasty.

Back in March, I couldn’t even sit in a chair for four hours. Hands, neck, shoulders, back, sometimes abdomen and thighs... everything hurt, if not all at the same time.

That frustrated the heck out of the PTs. As the spinal cord symptoms changed the painful and weakness areas would move around. As one put it, “I fix one thing on you and something else starts!”

Different from then, the symptoms now have just “settled in”. Right hand bad-ish depending on what I’m doing with it, left hand has a minor buzz mostly in the outer edge of the palm, legs are partially numb from waist down, but can feel “enough” to know what’s going on everywhere, feet similar with one toe that’s number than the others. Sometimes that toe inexplicably hurts for a while. Weirdness.

Some of that I’m told is the steroids, some is the signs of where there will be permanent neuro damage. They’re just putting off having PT/OT work on it due to the virus. So I do various exercises and keep it all as limber as possible. Walk. Stretches. Etc.

There’s other “fun” from the steroids. Like if I bend over at the waist, every single vertebrae will crack like some chiropractor just whacked you. There’s zero inflammation or padding anywhere and lots of “loose joints” that crackle and carry on. Rib cage, breastbone (really common with sarcoidosis patients, tight or crackly in that area due to getting it OUT of that area where it likes to hang out near the lungs), under the shoulder blades at times.

Gets tight. Stretch. Craaaaaack. Everything cracks. LOL.

And then the weird sensations of the blood glucose wild ride.., which all just ended for the most part with the latest step down and diet control. Went off the drug Labor Day weekend.

But was pretty weird from Mar-Aug. Number stays solidly in the range (70-120) now without the drug and only goes spiking up if I’m an idiot and eat significant carbs or anything that’ll process to sugar quickly. Definitely no sugar!

Tonight I tried a piece of thick pita bread. Well it was a whole gyro but I knew better. Half of the pita or less and the rest of the veggies and meat would have been fine. The pita. Mistake. I bounced up.

Oh well, add to the list of “should have known better” items. Sometimes I’m just testing things. Pastas, breads, all no-no’s right now in anything but small quantities. As the GP said, “You’re still sensitive, but why do we all eat so much of that crap anyway?” So right.

(Also lost an amount of weight but that wasn’t the goal. As a side effect of a much better diet, I’ll take it!)

Prednisone is a magic drug for certain things but man if you don’t get off of it fairly soon after needing it, it turns on you. Very happy to be halfway off that ladder. Wish I hadn’t had a bad reaction to coming off of it faster.

At current rates of recovery in the spinal cord, if the late fall imagery shows we are done in there, I’ll take the side effects of as rapid a step down off the crud as fast as they will medically let me go. Not taking it through December as currently planned if the initial job it was intended to do is completed.

We’ll just have a chat about whether there’s any reason to go that slow at that point. If it’s not needed for a medical reason — it’s gone.

Seriously want to give the organs a break by then. Right now the blood test numbers look the best they ever have, being all inside normal ranges, and all we’ve got left is this super annoying induced diabetic reaction and waiting on clear spinal imagery.

Basically the theory is perhaps there was sarcoid in the liver and steroid cleared it up, but it’s now struggling under the steroid to produce a protein needed to deal with normal insulin levels. Impossible to know until off the steroid. Pancreas’s behavior under the drug which was telling it to go harder was excellent. Too good really. Balancing act.

So... yeah. It’s just following the data and adjusting timelines now. PT, OT, steroids, etc.

Main goal is still eradication of the highlighted imagery areas in the spinal cord and that’s WAY ahead of schedule. (Neurologist said depending on individual body reaction, could have been two years on high steroids then there’s no further point to it. Seeing most of it gone in three-ish months has impressed everybody.)

It’s just a slog no matter how you slice it. Neuro better than expected, steroid side effects worse than expected or equal to expectations.

But still, couldn’t be happier at the recent news. Wasn’t expecting the wild glucose ride but everybody says “hang in there, it’ll end.”

The pain stuff, while annoying, well... I still haven’t popped a pain pill other than a single naproxen once since March. Not intending to, either. No interest in ever being that drugged up ever again. Hated it. Even that one naproxen felt like giving in. Nope. Don’t want it. But I had to do an outing with a long drive both ways and timing sucked. Mostly I couldn’t risk ruining someone else’s event. A funeral / memorial. I rarely do those. This man was special to me and known since 9th grade. Wasn’t going to let any symptoms mess with that day.

I’ll look into the virtual PT thing. I haven’t talked to her in a little over a month and a half. She’d like hearing the latest news anyway. Last time we talked I told her it would be a shock to see me walk in without the cane. Maybe even dance a little!

Not that I dance... you don’t wanna see that! :)

Basically the fight changed. But not in a totally unexpected way. Steroids suck long term. I’m super happy the two year worst case scenario isn’t happening! Holy crud that would suck. As best as I can tell they were targeting one year by dosage and we may be done in 3/4. Can’t really complain about that!

Weight down, BP good, O2 sats great, bloodwork normal, spinal cord clearing up. GP carefully checked the heart and stuff again and the imagery also showed zero changes there. Also great news with continued “seems fine” from the GP.

(Early on when the breastbone stuff got tight that made everybody mildly nervous. LOL. “Chest pain?” Yeah, but it’s coming from the bones for sure, Doc. Snap crackle pop stuff! )

Think I mentioned it before, but my video meeting with Mayo was almost comical. Symptom described, doc asked a question or two... “That’s the steroids.” For a bit over half an hour. LOL.

I know the joke is about anabolic steroids, the complete opposite of what I’m on... but...

If you can avoid it, don’t do steroids, kids!
 
Boring update. Mayo discussion recently about whether or not to visit in person this fall happened last week.

Because of the significant positive progress on imagery and no reversal of any described neuro symptoms, they said stay home, get new imagery late Nov/early Dec and we’ll do video again. Any neuro symptom reversal during planned Nov/Dec steroid step down, contact immediately and a likely airplane hop to MN immediately, just to see why.

Also listed off various symptoms again of other things like insane amounts of “crepitus” (the nurse taught me a new word, see old dogs and such...) or in layman’s terms, every joint everywhere cracks all the time... and the struggles with the stupid steroid induced diabetes, and again the Mayo doc chuckled and said, “yup, steroids” for it all.

Very ready to step down off the prednisone ASAP, as soon as neurology imagery says to do it. Even asked specifically about faster taper to end them at end of November. That was denied until the imagery says all positive neuro change has stopped.

It’s a “miracle drug” at first but long term it causes new medical problems. The drug I’ve come to love to hate now.

The good news is, next week is the last week at the current dose and we drop down in November/December anyway on the current plan.

Another interesting development was blood work showed ALL of the larger CBC panel items back in normal range including the liver numbers that went wacky and other weirdness over a year ago at onset of symptoms. I kinda mentioned this in the Sept update but wasn’t clear that nothing whatsoever is out of normal range now. Like!

Even tried to talk the GP out of the statin for cholesterol. He smiled and said nah, not until you’re off the steroids. He knows I’m in full blown “I want off all the damn drugs I can get off of!” mode.

Direct question I asked Mayo was if this might be an indication sarcoidosis had been messing with the liver, and this was met with “good possibility” — and of course that’ll require monitoring pretty much forever. The current treatment course would have likely eradicated it, so if it decides to return, it’ll happen over an unknown timeframe after immune modification drugs are stopped — if they’re stopped at all.

Still hinting at methotrexate long term but it really depends on whether the sarcoidosis decides to be acute and over with — or chronic. So at least for a little while there will be a no drug period to monitor that, eventually.

But it was nice to see those all those blood numbers drop right back into normal ranges.

Sooooo sick of the steroid side effects but working from home makes that all pretty tolerable, compared to if I was at the office.

Neuro symptoms are flat stable. I’d like to see a tad more improvement from where they’re at, but some of the issues may also just be steroid caused now as well. So we see how the first week of Nov goes. Mentally prepped for the possible increase in hand pain, still avoiding all pain drugs, shoulders and all muscles from neck to arms still have what I believe to be “steroid tightness” and such.

All the “mechanical” crunching and such does cause some neuro changes in the hand, likely from the stenosis seen in the neck, so differentiating what’s spinal cord related and what’s just the whole neck, arm and hand ticked off and tight, from steroids, is a toss up at the moment.

15 day average in blood glucose crept up a bit while managing without the diabetic drug and only diet, but still in range. Occasionally have taken that pill for dietary mistakes that bounce the glucose above 120 but didn’t refill them and doc discontinued them. Note to self: Can’t eat the cheese honey biscuit with the BBQ meat. LOL. Dummy. :)

Lord only knows what the long term effects of the sulfa antibiotic have been or will be also. Another pill I’ll be glad to be rid of eventually.

Swings between retaining water and having it pass through me in an hour depending on the day are highly annoying. Ha.

Request to get my butt back into PT was ignored. Mayo seems to still be completely paranoid about recommending that. I’m over it. I’d head over and do it in a heartbeat. But ... we wait. Thanks Covid.

Oh. Mayo also decided to leave well enough alone on the O2 at night that was “just in case” on the initial sleep apnea study that needed a full sleep study. But for a good reason.

GP finally said it out loud, and I got it.

“No point in sending you to a sleep study while the diabetic effect is going on. Do you not get up to pee at night?”

Oh yeah. Good point. Can’t get six hours of sleep data from me right now, anyway! Ha. Hadn’t thought of that. :) Was a surprise head-slap moment for me. Duuuuuuuh.

He knew the steroids were headed down that path back when I asked to get that thing done/over with. Sooo, continue to wear the silly O2 tube and listen to the Darth Vader machine over in the corner all night... have forgotten it a few times and zero difference in daytime alertness or any of that. Eventually the pulmonary folk shall get to decide if there’s really an apnea issue or was it a lung issue or neither. They’ll have me sit in a box and blow in a tube again, sooner or later.

Both of us have managed to drop 30 lbs this summer. Can’t complain other than none of my pants fit. Kinda exposed where my fat was hiding some varicose veins and even regular veins in other areas. Ha. Weird.

Oh yeah. Teeth! Holy crap are they sensitive to everything cold now. Freaking steroids. LOL. Also I was always a “tarter builder” type at the dentist and there’s literally none for months now. A very odd side effect. Some tendency toward a more acidic level in the mouth I assume along with the diet change. Not even the sensitive teeth toothpastes touch it. Ice water is torture. LOL.

The key word right now is WAIT. On everything.

At least work is insanely busy.

Cool bug in the incessant CVS IT systems. Apparently dumping drugs and archiving them leads to getting text messages that you might be running low on “CVS” and would you like to refill it? LOL. Yeah I do seem to be almost out of CVS! Haha.
 
Great news Nate. You know, the trip to MN, when/if it happens, not sure if you flew commercial, but you are a prime candidate for Angel flight, you should get yourself signed up if no one can help you out and you haven't already done so.
 
PaulS said:
Great news Nate. You know, the trip to MN, when/if it happens, not sure if you flew commercial, but you are a prime candidate for Angel flight, you should get yourself signed up if no one can help you out and you haven't already done so.
Click to expand...

Technically yeah. I still own an airplane and co-owner has joked in the past about flying me out there. They can save their flights for the folks who need em waaaay worse.

Honestly something with a lavatory is probably a minor requirement these days though. Ha. That or seriously dehydrating myself pre-flight!

Depending on the day, I’ve made sure the bladder was empty before an errand to town and then been headed straight for the convenience station there an hour later with another full bladder! LOL.

I’ve learned not to drive thru the cities with tighter Covid lockdowns, where they’ve closed all their public restrooms, without having a “plan”. Hahaha. Pain in the butt.

I figure at least being a male, if I ever really mess that up, I’ll just water the grass somewhere. Arrest me. Don’t care. Hahahaha.
 
PaulS said:
Great news Nate. You know, the trip to MN, when/if it happens, not sure if you flew commercial, but you are a prime candidate for Angel flight, you should get yourself signed up if no one can help you out and you haven't already done so.
Click to expand...


Great idea! Nate, maybe you could fly right seat!
 
tspear said:
That is called distracking the pilot, attempting to make them task saturated and make mistakes. :)

Tim
Click to expand...

jsstevens said:
Also a viable CFI tool. Some are better at it than others...
Click to expand...

Funny thing is, I’m actually pretty quiet in the airplane. If the pilot knows me on the ground it actually makes them MORE nervous. LOL!

But in general it’s to avoid slang. Specific direct instructions... especially during times when sterile cockpit should be being observed.

Do as I say not as I do on that on — from the youtubers who babble at cameras in the pattern instead of shutting up and looking for traffic — drives me bat-shyt crazy watching them. Hate it. Horrible examples to their students.

“Let’s jack around with six GoPros instead of flying the GD airplane!” Bah.
 
denverpilot said:
Funny thing is, I’m actually pretty quiet in the airplane. If the pilot knows me on the ground it actually makes them MORE nervous. LOL!

But in general it’s to avoid slang. Specific direct instructions... especially during times when sterile cockpit should be being observed.

Do as I say not as I do on that on — from the youtubers who babble at cameras in the pattern instead of shutting up and looking for traffic — drives me bat-shyt crazy watching them. Hate it. Horrible examples to their students.

“Let’s jack around with six GoPros instead of flying the GD airplane!” Bah.
Click to expand...
Sorry about your lawn, bro. :)
 
denverpilot said:
Lol. That’s Boomers. I’m Gen-X. The lawn is very very dead and I don’t care. Haha. Watering bluegrass planted in a semi-arid desert so you can mow it, is dumb. :)
Click to expand...
lmao, that is one reason I want my wife to consider retiring to Colorado.
We just had a sprinkler system installed, I have to admit it has made the grass/yard look really nice. But we did it for curb appeal when we sell the house in a few years. No way, do i want it long term.

Tim
 
tspear said:
lmao, that is one reason I want my wife to consider retiring to Colorado.
We just had a sprinkler system installed, I have to admit it has made the grass/yard look really nice. But we did it for curb appeal when we sell the house in a few years. No way, do i want it long term.

Tim
Click to expand...

LOL! Yeah. The prairie grass out here doesn’t need watering but we’ll take the snow... for the mountain fires. They’re saying this winter storm helped.

Sounds like the La Veta Pass area got about 23”, highest I’ve heard so far. We got about 4”.

Our one of two trees out there (unless you count that half dead thing on the left, then three...) changed to “fall colors”... er, brown. Ha.

72989617c78a358c710727a330a980fd.jpg
 
Ugh. It’s steroid step down days. Whole body is having a hissy fit.

Muscles, joints, neuro symptoms, all confused at the moment. Bad then good then bad then good. Ha.

Started step down Saturday. Body should mostly figure it out by Wed or so.

Definitely can tell there ain’t no adrenaline doing anything significant right now. Ha.

Walked the driveway twice, once to measure the fence for Christmas lights, the other to take the trash out and drag the cab up the embankment to the road.

Got back to the house and flopped in a chair for a few minutes. Ha. Felt like I did a lot more. LOL.

By the way there’s 340’ of fence line along the driveway. Not that anybody cares... ha.

Also made myself wind up the 100’ tape with the bad hand, just because. Might as well make it do stuff. Already uncomfortable as heck today, why not annoy myself further? Haha.

At least I know I won’t get truly excited about any of it. Ha.

Side benefit: Zero adrenaline production on Election Day. Ha. Annoying or not I’ll probably just want a nap.

Which is about how useful elections are anyway... haha. Here’s my sticker.

74b11671f7c7f2a69b3351cb1bfd9c10.jpg
 
Step down has a positive side. The docs think you will live longer.
If they do not care about your future, they just might keep you hopped up...

Tim
 
That’s funny right there!

I have no idea how to properly quantify it but today was half as painful as yesterday. Ha.

So the old body is figuring something out. LOL

Go pancreas! Rah rah adrenal glands! Yay liver!
 
Old Thread: Hello . There have been no replies in this thread for 365 days.
Content in this thread may no longer be relevant.
Perhaps it would be better to start a new thread instead.
Back
Top