Steroids (Dexadron)

[Gripen]

Ok, time to see if there dome maggot advice on this.

I've been on dexamethazone since March with a brief but brutal respite in Sept. Over the summer it was fairly low dose but I recently had to go on a massive increase which means I'm on a long raper now.

Anyway I'm really struggling with the side effects including bloating, muscle loss, excessive appetite and weight gain. Roid rage as well but that's another story. Haha.

Anyone have some coping strategies they've used? I'm trying duper hard to stay to fixed meal times, letting my wife tell me if it appropriate to be hungry, avoiding bloaty foods. (no beer). My oncologist and nuero surgeon are trying to be helpful but admit they don't have a ton of experience with a 33yr old who's still riding DH bikes and trying to peep for a winter of big mtn real skiing.
. I'm trying to ride my bike as much as the weather and vision allows for sure but it's proving harder then it was over summer/fall..

The mental side effects of constantly being wired and task focused are wearing me out as well. I'm mentally exhausted to the point I'm too tired to decompress.

So any advice? Have to be some nags that have been on ng term steroids out there.

[Gripen]

Shit. This should be in gimp central if one of the mods wants to move it.

[DasBlunt]

Vibes first off (cancer, I assume?), sounds like everything is moving forward....

Radical change of the diet can do wonders for body and disposition, especially if dealing with cancer. Gary Null provides one of simplest diets for a family to adapt to. He has a shit ton of awesome books, but a few specific and really good general books on basic nutrition and specific diet routines.

I mention the family adapting to a diet. It will be the most successful if everyone gets on board with a diet change. Diet does not imply losing weight; it is just changing the order and quality of foods.

[GeezerSteve]

Is the plan to taper off it for good or back to low doses?

I was on very high doses of Decadron before and after brain surgery in 10 months ago. I gained 40+ lbs., was always hungry and surly, temporarily became a diabetic, slept like hell and generally felt like shit. Sound familiar? (It's impossible for me to completely segregate the effects of the steroids from the effects of having a hole sawed in my skull, having my inner right ear removed, facing my new reality of living the rest of my life one-side vestibular, wondering if I'd ever ski or climb again, etc., etc.) But, hey, it was better than the alternative of a high risk of dying from brain swelling.

It took at least a month to taper off of it, so I can't speak to long term dosing.

Anyway, I really don't have any advice. If you're wife is being patient and loving, you're a lucky man, but you've likely already figured that out. I can't imagine going through my experience without Anita's support.

Hang in there bro

ETA: DasBlunt makes a good point about diet. Anita was great about stocking healthy food and keeping me away from beer and carby snacks.

ETA2: Anita also worked to end each day with a mellow setting. I think that helped.

[Gripen]

Is the plan to taper off it for good or back to low doses?

I was on very high doses of Decadron before and after brain surgery in 10 months ago. I gained 40+ lbs., was always hungry and surly, temporarily became a diabetic, slept like hell and generally felt like shit. Sound familiar? (It's impossible for me to completely segregate the effects of the steroids from the effects of having a hole sawed in my skull, having my inner right ear removed, facing my new reality of living the rest of my life one-side vestibular, wondering if I'd ever ski or climb again, etc., etc.) But, hey, it was better than the alternative of a high risk of dying from brain swelling.

It took at least a month to taper off of it, so I can't speak to long term dosing.

Anyway, I really don't have any advice. If you're wife is being patient and loving, you're a lucky man, but you've likely already figured that out. I can't imagine going through my experience without Anita's support.

Hang in there bro

ETA: DasBlunt makes a good point about diet. Anita was great about stocking healthy food and keeping me away from beer and carby snacks.

ETA2: Anita also worked to end each day with a mellow setting. I think that helped.

Ding Ding Ding. Exactly how I feel. I put about 40ish on as well but dropped more then half before coming back up. Got some good chipmunk cheeks going on. The Roid rage thing is kinda funny in the abstract. I think most people would describe me as fairly laid back but I had visions of stabbing someone with a carrot for fucking up at self check out at Safeway.

Plan is too taper off completely within the year but I was a bit eager and had a recurrence of brain swelling and some adrenaline problems so I'm taking it slower this time. Like you said, fine balance between rain swelling and side effects.

The steroids also seem to be contributing heavily to the vision loss but not sure exactly how so we are starting some new non nuero ophthalmology stuff when I return from Belize.

Diet wise we were doing fairly well. Been seeing a dietitian and oncology naturopath but fell off the wagon a bit when I was on low dose. Dad Blunt I'll look into though books. I think diet control is an awesome idea just need to work harder on sticking with it.

And yea man. The thoughts about not being able to crush it on skis or a bike anymore or like I did are quite humbling. Much more so then I anticipated.

What kind of snacks were you eating Steve? It's a fixation with food so just having something to nibble and chew helps calm down a bit but I gotta make it low calorie low carb low everything.

On the plus side I am a cooking and baking machine at the moment. Wife and friends are getting lots of home cooked stuff!

[iceman]

And yea man. The thoughts about not being able to crush it on skis or a bike anymore or like I did are quite humbling. Much more so then I anticipated.

To address this head on: You were getting old anyways, that shit was coming, fuckit. It's the way of the world, of life, of how shit goes. Don't sweat that. Move on.

[Gripen]

To address this head on: You were getting old anyways, that shit was coming, fuckit. It's the way of the world, of life, of how shit goes. Don't sweat that. Move on.

The truth.

[GeezerSteve]

The steroids also seem to be contributing heavily to the vision loss but not sure exactly how

I have some vision loss in my right eye but I think that resulted from the surgery. Weird dialing the diopter on my bins to +2-1/2. I experienced some blurry vision when I was on the high roid doses but that went away after the taper.

And yea man. The thoughts about not being able to crush it on skis or a bike anymore or like I did are quite humbling. Much more so then I anticipated.

IME the anxiety of future limitations is worse than the actual limitations. I can ski 90% of what I used to with good visibility, but get really screwed up in low viz conditions. I have difficulty skinning up steep stuff, especially open slopes, and class 3-4 scrambling -- and that sucks cuz I love high routing. I have done some road biking and that was weird (I can't look over my shoulder without the threat of falling). I doubt I could MTB on a single track. Anyway, those limitations are not related to roids, and are instead the product of my right side inner ear/vestibular being drilled out, i.e., my brain's balance mechanism having 50% less vestibular info, so I'm much more dependent on visual clues for balance. A few of my buds and Anita have had to baby sit my woosy brain in some spots in the mountains. Time will tell whether there will be some improvement, but it's certain that it'll never be what it was.

Notwithstanding the reality of these new limitations, I consider myself very lucky to be getting out there. And that's the key -- accept your new reality and be thankful for what you've got, e.g., your life, your wife, whatever range of activities your new brain will permit, etc.

What kind of snacks were you eating Steve? It's a fixation with food so just having something to nibble and chew helps calm down a bit but I gotta make it low calorie low carb low everything

Oh yeah, low glycemic foods is the way to go. Anita got on the paleo kick, so that greatly helped. Popping an olive often abated my hunger pangs. But when I was peaking on the high Decadron dosing I could have eaten 2 big boxes of crackers and 3 dozen Krispy Kreme donuts in a sitting, and then be thinking about my next carb binge. Keep that shit out of the house.

[DougW]

Shit, sorry to hear of your troubles. Great to see the great responses in this thread. The only somewhat helpful thing that I could post would be to buy really old carrots. They will be cheaper and due to more rubbery structure will do less damage to your victim.

CA and I bought skis so go buy some healthy shit to eat. The dogs are loving horse shit these days so much so their sit looks like horse shit. So if you come upon any vegan recipes that have horse shit as an ingredient I can always drop off can full in Canmore.

On crushing it , you will again but just in a different demographic.

[Gripen]

Olives! Good idea, going to give it a shot.

I think you're right about the perceived limitations then the actual limitations themselves. I get rally stressed about doing something and it turns into a viscous circle. Most of the time I can do, be cooking dinner, shopping or even xc riding. I know this winter and skiing will be a huge challenge but I'm taking it slow.

I've been invited to ski with the Canadian para team in Pano at the end of Nov for my first taste of visual impaired skiing and super stoked on that. Also looking into some stuff with Live it Love it Foundation to get back into big mtn skiing at Revy. Just need to keep active until then and get some muscle back.

I have found my limitations in certain areas though and just figuring out one little strategy a day helps a ton. If I can do one thing more independently or with less stress then the day before I win.

And I am killing everyone with kindness even if I secretly want to stab them. Sonja did make me leave starbucks the other day after they fucked up my order. I had to wait outside.

[Gripen]

Shit, sorry to hear of your troubles. Great to see the great responses in this thread. The only somewhat helpful thing that I could post would be to buy really old carrots. They will be cheaper and due to more rubbery structure will do less damage to your victim.

CA and I bought skis so go buy some healthy shit to eat. The dogs are loving horse shit these days so much so their sit looks like horse shit. So if you come upon any vegan recipes that have horse shit as an ingredient I can always drop off can full in Canmore. .

There must be a market for horse shit in the Blae!

[DougW]

No there is a surplus horse poop, cow poop , elk poop, every type of poop

[Gripen]

Fuck ya. Cleared to come off the roids. Should be roid free by Jan 3rd!

[Mazderati]

Awesome. Things are looking good?

[Gripen]

........