Tapering off steroids

Following a recent pituitary surgery, I’ve been put on a corticosteroid regimen—three tablets daily—that looks to be a lifelong commitment.
In the rush to finally get rid of the prolactinoma, I neglected to ask my doctors about the long-term fallout of the procedure itself. Now, I find myself in a frustrating position where hormones that were perfectly balanced before the operation are completely out of whack.
Talking to others who rely on steroids for different conditions, I've learned—and can certainly feel on my own skin—just how much they suppress the immune system, spike blood pressure, and trigger a host of other side effects.
But more than anything, there is the mental toll of managing daily pills. I was someone who never even reached for an aspirin because my health was flawless; now, my entire routine revolves around medication.
Does anyone here know if there are any alternative treatments that could replace this steroid cocktail? Is there actually a way to step off this medication eventually?

A friend of mine has been on corticosteroids and immunosuppressants for two or three years now.
She managed to ease the whole thing through homeopathy—taking piles of vitamins—and she’s actually managed to scale back her steroid dose a bit.
My advice? Don't you dare try to quit those on your own... seriously, don't.
You'll run into issues during pregnancy, too, though there are doctors for that—it's just that in the US, you'll find specialists who handle this, but even then, your options are pretty limited.

Just focus on yourself right now... if you need anything else, just shoot me a DM.

Nicole Chavez5 said:Following a recent pituitary surgery, I’ve been put on a corticosteroid regimen—three tablets daily—that looks to be a lifelong commitment.
In the rush to finally get rid of the prolactinoma, I neglected to ask my doctors about the long-term fallout of the procedure itself. Now, I find myself in a frustrating position where hormones that were perfectly balanced before the operation are completely out of whack.
Talking to others who rely on steroids for different conditions, I've learned—and can certainly feel on my own skin—just how much they suppress the immune system, spike blood pressure, and trigger a host of other side effects.
But more than anything, there is the mental toll of managing daily pills. I was someone who never even reached for an aspirin because my health was flawless; now, my entire routine revolves around medication.
Does anyone here know if there are any alternative treatments that could replace this steroid cocktail? Is there actually a way to step off this medication eventually?

Honestly, you should probably move this over to the alternative medicine board. There are tons of people over there who managed to get off those kinds of therapies by using MMS or other alternative methods. You might want to check out the thread on MMS in the alternative treatment subforum too.

[QUOT=Nicole Chavez5;20011296]After my recent pituitary surgery, I ended up on corticosteroid therapy (three pills a day) which—it seems—is going to be lifelong.
Unfortunately, before the procedure, I didn't think to ask my doctors about the long-term consequences regarding medication... my only priority at the time was just getting rid of the prolactinoma. Now, I'm stuck in a situation where the hormones that were perfectly fine before surgery are totally out of whack.
Talking to others who take corticosteroids for different conditions, I’ve learned (and can definitely see it on my own skin) that they tank your immune system, spike your blood pressure, and come with a whole laundry list of side effects.
But honestly, the worst part is this constant mental load of having to track daily pills—I’ve never even taken an aspirin before this because I was perfectly healthy.
Does anyone know if there are any alternative treatments that could replace this steroid poison? Is there any way to get off this stuff?

I can't tell you for certain if your treatment will be permanent, but if the surgery required removing the entire pituitary gland (or a significant portion of it), then the answer is likely YES.
Here is the reality: the pituitary gland is responsible for regulating the production of corticosteroids in your body, and those hormones are essential for basic survival. If there is a major deficiency or a total lack of them—for whatever reason—it becomes life-threatening.
Unlike many illnesses where people take massive doses of corticosteroids—which leads to all those nasty side effects—you are taking what we call "replacement doses." These are just the amounts of hormones your body would normally produce every single day, which you now lack due to the surgery. You shouldn't expect to deal with severe side effects from these specific doses.
Whatever you do, do NOT stop taking them abruptly, and make sure you stay on top of your checkups.
Good luck!

Nicole Chavez5 said:Following a recent pituitary surgery, I’ve been put on a corticosteroid regimen—three tablets daily—that looks to be a lifelong commitment.
In the rush to finally get rid of the prolactinoma, I neglected to ask my doctors about the long-term fallout of the procedure itself. Now, I find myself in a frustrating position where hormones that were perfectly balanced before the operation are completely out of whack.
Talking to others who rely on steroids for different conditions, I've learned—and can certainly feel on my own skin—just how much they suppress the immune system, spike blood pressure, and trigger a host of other side effects.
But more than anything, there is the mental toll of managing daily pills. I was someone who never even reached for an aspirin because my health was flawless; now, my entire routine revolves around medication.
Does anyone here know if there are any alternative treatments that could replace this steroid cocktail? Is there actually a way to step off this medication eventually?

Don't go playing games with your health or your life.
In your specific situation, corticosteroids are absolutely VITAL.

Just like Larry Adams2 mentioned above...

I’m currently on corticosteroids myself because I’m dealing with an autoimmune condition. It’s a fact that they act as immunosuppressants—essentially dialing down your immune system—and yeah, they come with a long list of side effects, ranging from the minor nuisances to the much more serious stuff. But honestly, you might experience them, or you might not; it really just depends on the individual. One thing I will say, though, is please don't go abruptly stopping your treatment. Everything regarding that has been covered before, but I personally don't think any alternative is going to be able to replicate or balance out those hormone levels in your body 🤷 this isn't something you should be experimenting with.

Hannah Williams5 said:Don't go playing games with your health or your life.
In your specific situation, corticosteroids are absolutely VITAL.

Just like Larry Adams2 mentioned above...

What drives me crazy is that my cortisol levels were perfectly normal before the surgery. I have no idea what they look like now—I won't know until my follow-up in six months—but I know this for certain: during the last few months of being on those pills, my HPV infection flared up to CIN 3, and I developed allergies despite having never suffered from them before.

It’s entirely possible this started happening because of the corticosteroids; after all, they are immunosuppressants. I remember being warned the moment I started my treatment that it would be incredibly easy to pick up every bug going around due to a weakened immune system. Now, I find myself having to get nasal and throat swabs, urine cultures, and if I have a cough that lasts more than three days, I pretty much head straight for antibiotics...

And what else can I say... corticosteroids aren't exactly harmless, though they certainly do their job. What you might consider doing is asking your primary care physician to send you in for regular testing—swabs, urine samples, blood work—just to see if there's any potential "threat" so it can be nipped in the bud immediately. In any case, you’ll just have to be mindful of a hundred other things now, unfortunately.

I’ve been on corticosteroids for 15 years now. Honestly, I haven't dealt with much besides some high blood pressure—which I manage with pills—and that classic "moon face" look back when I was getting the heavy doses.
If it helps at all, remember that every single one of us on these meds used to be perfectly healthy and didn't need them. Life happens. Things change—sometimes for the better, sometimes they just suck.
There’s zero reason to panic. If things were actually as dire as you think, who knows where I'd be right now... I might not even be around anymore.
Don't spiral into thinking everything is bleak. Just be grateful to God that there’s actually a solution for what you're going through. What would people fighting cancer or AIDS give to have a working treatment for their condition??
We really do need to stay thankful, because before corticosteroids existed, people were dropping dead left and right.

I’m right there with you, melloworca6. I’m only 24 years old, and honestly, until just last month, I was the picture of perfect health—zero issues, nothing at all. But then I ended up in the ER for the third time, and this time they actually kept me overnight. It was a terrifying experience; I truly felt like I barely made it out alive. They diagnosed me with myocarditis and some pericarditis and whatnot... so now, here I am, stuck on corticosteroids. Specifically, I'm taking Decortin.
As for the side effects? Well, while I was still in the hospital, I broke out in a massive rash—steroid acne, basically. Then came the "moon face." Then, out of nowhere, I started growing dark hair in places where I've never had a single hair in my life. My stomach even swelled up like I was pregnant. I really thought things couldn't possibly get any worse than that. Now, I've been scaled back to 5 mg every third day, which I'll be doing until May 15th.
I suppose I should try to stay positive, because we all know things can always take a turn for the worse...

steeljackal8 said:I’ve been on corticosteroids for 15 years now. Honestly, I haven't dealt with much besides some high blood pressure—which I manage with pills—and that classic "moon face" look back when I was getting the heavy doses.
If it helps at all, remember that every single one of us on these meds used to be perfectly healthy and didn't need them. Life happens. Things change—sometimes for the better, sometimes they just suck.
There’s zero reason to panic. If things were actually as dire as you think, who knows where I'd be right now... I might not even be around anymore.
Don't spiral into thinking everything is bleak. Just be grateful to God that there’s actually a solution for what you're going through. What would people fighting cancer or AIDS give to have a working treatment for their condition??
We really do need to stay thankful, because before corticosteroids existed, people were dropping dead left and right.

In my case, things changed because my doctors lacked the initiative to explain the potential fallout from surgery for a benign growth. Before the procedure, I wasn't taking any pills or steroids, and my hormone levels were completely normal. Now, this therapy has left me feeling pretty desperate.

Can someone explain the actual reasoning behind prescribing Cortef? My doctor didn't bother to provide an answer.

Nicole Chavez5 said:In my case, things changed because my doctors lacked the initiative to explain the potential fallout from surgery for a benign growth. Before the procedure, I wasn't taking any pills or steroids, and my hormone levels were completely normal. Now, this therapy has left me feeling pretty desperate.

Can someone explain the actual reasoning behind prescribing Cortef? My doctor didn't bother to provide an answer.

It's honestly wild to me that you weren't given any guidance, but I gotta be real—your posts feel a bit childish. Sorry, but I have to say it...
You're basically trying to tell us sick people that you were "NEVER" unwell before having surgery for a benign tumor???
We were all perfectly healthy until a certain point, too...

I'll answer your questions for you.
1. You can't live without Cortef. Period. It's that simple. If your pituitary gland stops producing it after surgery—especially if it was fully removed—then what? Are you just going to stop taking it?
Exactly my thought!!
For all we know, you could have Lupus and be on massive doses of actual, legitimate corticosteroids...
One piece of advice: keep an eye on your electrolytes, specifically sodium and potassium, eat normally, and just live your life...
Some people have it way worse, even if things aren't easy for you right now, obviously..
Hang in there and quit the moping.

If you’re taking corticosteroids, you have to follow a specific lifestyle if you want to actually fix your immune system and live a normal life!
1. Sleep
2. Diet
3. Physical activity
4. Immunomodulators
5. Hydration

At the end of the day, if a tumor develops, it means the immune system has already failed and the body has given up. Simply removing the tumor doesn't solve the underlying issue.!!!
I’d urge everyone not to rely too heavily on the internet; there is just way too much conflicting information out there. I managed to go seven years without corticosteroids by managing things myself, which can be incredibly dangerous if done incorrectly. However, it is worth noting that a small segment of the medical community believes we shouldn't be relying on steroids at all, but should instead compensate for everything through a healthy, high-quality lifestyle!
You’re probably wondering why.
Here is the answer: the sheer volume and combination of all these medications eventually exhaust the body. By the time you hit 45, you face a massive risk of stroke or heart attack.

I wanted to add one more tip that might be a huge help!

Try placing a small bowl of sliced black onions in every room. The idea is that they act as a natural sponge to soak up bacteria and viruses from the air.

Hey everyone!!
So, I’m also one of those people who was on corticosteroids (Medrol). Just a year ago, I was basically the picture of health—super strong immune system, never even caught a common cold, let alone anything serious. Then I got diagnosed with Lupus (SLE), but honestly, that only happened after I spent four days on a ventilator. Back then, they had me on 125mg of steroids, and then they started tapering me down, just like they do for everyone else. After about six months, I was down to 4mg. I stuck to the taper religiously because I know you absolutely cannot just stop taking them until you hit the lowest possible dose!!
While I was on that treatment, things actually seemed fine—the Lupus was quiet. But with all those side effects, I can't even tell if the disease is flaring up again or if it's just the lingering side effects messing with my head. It makes me super paranoid! I did a little digging into my specific situation, and a ton of people suggested I try homeopathy.
And look, speaking from my own experience, I actually stopped the steroids once I hit that 4mg mark and switched over to homeopathy, and my lab results have actually improved!! If my numbers hadn't gotten better, I would have DEFINITELY gone right back onto the steroids.
So, I have a couple of questions!
1. Is it even safe to be on corticosteroids for the rest of your life?
2. How long does it actually take for them to fully leave your system? I gained a decent amount of weight from them, and even though I haven't taken any for three months this year and the bloating has gone down—so I look somewhat normal—the scale is still showing more weight than I had even when I was at my heaviest from the steroids!
Does anyone have an explanation for this? And no, I am definitely not overeating to gain weight.

I’ve been undergoing Decortin therapy due to radiation exposure, and I’ve attempted to taper off twice now. Each time I try to break away from it, I'm hit with debilitating headaches and a host of other complications. Is it wiser to resume the treatment, or should I simply endure this discomfort, and if so, for how much longer?

Jeremy Hill said:I’ve been undergoing Decortin therapy due to radiation exposure, and I’ve attempted to taper off twice now. Each time I try to break away from it, I'm hit with debilitating headaches and a host of other complications. Is it wiser to resume the treatment, or should I simply endure this discomfort, and if so, for how much longer?

Honestly, there's just too little info here for me to give you any kind of real analysis.

1. Which part of the body was being treated with radiation?
2. What’s the specific diagnosis or indication behind the radiation?
3. How old are we talking?
4. Any history of other health issues?
5. Besides the Decortin, what other regular or occasional meds have you been taking?
6. Aside from the headaches, what exactly are these "other difficulties" you mentioned?
7. What dose of Decortin were you on, and what did your daily schedule look like?

If there's actual edema involved—whether it's cytotoxic or post-radiation—it might make sense to look into different ways to manage the swelling, like maybe a mannitol IV infusion.

Nicole Chavez5 said:Following a recent pituitary surgery, I’ve been put on a corticosteroid regimen—three tablets daily—that looks to be a lifelong commitment.
In the rush to finally get rid of the prolactinoma, I neglected to ask my doctors about the long-term fallout of the procedure itself. Now, I find myself in a frustrating position where hormones that were perfectly balanced before the operation are completely out of whack.
Talking to others who rely on steroids for different conditions, I've learned—and can certainly feel on my own skin—just how much they suppress the immune system, spike blood pressure, and trigger a host of other side effects.
But more than anything, there is the mental toll of managing daily pills. I was someone who never even reached for an aspirin because my health was flawless; now, my entire routine revolves around medication.
Does anyone here know if there are any alternative treatments that could replace this steroid cocktail? Is there actually a way to step off this medication eventually?

What makes you think the steroids are for life? Was this your first pituitary surgery, or have you had one before?

velvetmoose9 said:Honestly, there's just too little info here for me to give you any kind of real analysis.

1. Which part of the body was being treated with radiation?
2. What’s the specific diagnosis or indication behind the radiation?
3. How old are we talking?
4. Any history of other health issues?
5. Besides the Decortin, what other regular or occasional meds have you been taking?
6. Aside from the headaches, what exactly are these "other difficulties" you mentioned?
7. What dose of Decortin were you on, and what did your daily schedule look like?

If there's actual edema involved—whether it's cytotoxic or post-radiation—it might make sense to look into different ways to manage the swelling, like maybe a mannitol IV infusion.

Radiation was applied to the entire pituitary region due to a germinoma; the patient is 17 years old. They are currently on Decortin during the radiation process, gradually tapering down from 2 Decortin daily to lower doses. Along with the headaches, they are experiencing nausea, stomach pain, and abdominal cramps. Prior to the germinoma, there was a diagnosis of diabetes insipidus.

Jeremy Hill said:Radiation was applied to the entire pituitary region due to a germinoma; the patient is 17 years old. They are currently on Decortin during the radiation process, gradually tapering down from 2 Decortin daily to lower doses. Along with the headaches, they are experiencing nausea, stomach pain, and abdominal cramps. Prior to the germinoma, there was a diagnosis of diabetes insipidus.

Regarding those stomach pains and cramps, it might actually make sense to look into an PPI—basically something meant to "shield" the stomach lining from being eaten away by its own acid. Something like pantoprazole (Controloc) could be worth a shot.
Maybe even some Reglan amp. i.v. as needed, or just the standard Reglan tbl 1,0,1.

Was there a recent brain CT scan, or maybe even an MRI?
Are they seeing any signs of edema?

The way I see it, it makes sense—provided there aren't any contraindications (since I don't have the full clinical picture, especially regarding how active the diabetes insipidus is or what the latest lab results are showing)—to consider using 20% mannitol, Fursemid amp. i.v., and maybe some potassium replacement if needed (like Kalinor tablets). But obviously, all of that is up to the medical team on the ground: the oncologist, the radiation therapist, the pediatric neurologist, the endocrinologist... the whole crew.