Tapering off steroids

I have been tapering off Decortin for about ten days now. I moved from 20mg down to 10mg, and as of yesterday, I am completely off it. Now, I am wondering about this itching sensation that has flared up across my abdomen and legs—is this a normal reaction? There is some slight redness when I scratch too hard, but otherwise, my skin feels incredibly dry and the itching is quite intense. Is this something permanent, or just a temporary phase? Honestly, I would rather be coming off heroin than dealing with this Decortin withdrawal.

Isn't that a bit too fast?
I can't recall the exact details off the top of my head, but I have a tapering schedule somewhere that my rheumatologist wrote for me. It was with Medrol, but we were at 8mg daily, and honestly, it took much longer than a month... something like two weeks at one dose, then dropping to 4mg the next day, followed by two weeks at 4mg, and then another two weeks taking 4mg every other day...
I know that Decortin comes in a minimum dose of 5 per tablet, while Medrol is 4, so I assume the tapering process would be pretty similar.
Or perhaps my rheumatologist was just being extra cautious because I had been on it for such a long time...

I was on it for a brief period, but they were prescribing massive doses. I would go through withdrawal, and then they would simply start me up again. The most intense stretch was receiving 250mg of Medrol via IV for three consecutive days.

What was the reason you were getting them?

Does anyone here deal with corticosteroids for managing MS, systemic sclerosis, lupus, or mixed connective tissue diseases?
I don't personally suffer from them, but I have witnessed firsthand just how devastating the side effects can truly be... My mother was initially diagnosed with multiple sclerosis, only for an immunologist to claim after her passing that it was actually systemic and mixed connective tissue disease instead. Out of all the complications—whether from the medication or the illness itself—the only thing that didn't strike her was her respiratory system. Ultimately, she passed away following a third heart attack. The immunologist maintains he has never encountered such an atypical case in his entire career...
My aunt lives with lupus, and her skin has taken the brunt of it. Because of the corticosteroids, she has an open wound on her foot that simply refuses to fully heal, even after five years... The wound manages to close slightly only when she treats herself with various natural remedies, yet it reopens every single time she takes higher doses of Medrol for more than a week.
I see the same doctor on a preventative basis because I struggle with pronounced Raynaud...
I truly take my hat off to those fighting autoimmune diseases. It is a terrifying battle to endure...

I’ve been on a course of steroids to manage an autoimmune kidney condition. For the first two months, I actually felt fine—no side effects at all—but lately, everything has hit me at once. My skin has become incredibly thin, I'm dealing with breakouts, and there's suddenly cellulite everywhere. I've also put on about 6 or 7 pounds, and my mood swings have made me feel constantly on edge. So, yeah... that's the current state of affairs.

melloworca6 said:What was the reason you were getting them?

Skin redness.

To those currently on Medrol or anyone who has successfully transitioned off it, I have two questions:

While you were taking Medrol, did you supplement with anything else to mitigate its side effects? For instance, something like an antacid?

Has anyone discovered a viable way to pivot from Medrol toward alternative treatments that actually hold weight when managing autoimmune conditions? I’ve been digging through literature on homeopathy, curcumin, and MMS, but I’m feeling a bit lost in the noise. My current takeaway is simply that relying on Medrol isn't a sustainable long-term strategy.

Mark Lopez3 said:To those currently on Medrol or anyone who has successfully transitioned off it, I have two questions:

While you were taking Medrol, did you supplement with anything else to mitigate its side effects? For instance, something like an antacid?

Has anyone discovered a viable way to pivot from Medrol toward alternative treatments that actually hold weight when managing autoimmune conditions? I’ve been digging through literature on homeopathy, curcumin, and MMS, but I’m feeling a bit lost in the noise. My current takeaway is simply that relying on Medrol isn't a sustainable long-term strategy.

I’m taking prednisone myself, and it’s essentially the same story. To manage it, I take Controloc, calcium, Vitamin D, and magnesium, while also keeping a very close eye on my blood sugar and blood pressure. I’ve cut out salt entirely, which has been my saving grace in avoiding massive weight gain, but the "moon face" is still there and my body has definitely changed; I never dealt with cellulite in my life, yet now I see it even on my arms. I seem to have a bit of a resistance to it, so I suspect they'll be tapering me down soon—I'm at 60mg currently and taking a different immunosuppressant alongside it.
I don't buy into alternative medicine.

Drew Scott20 said:I’m taking prednisone myself, and it’s essentially the same story. To manage it, I take Controloc, calcium, Vitamin D, and magnesium, while also keeping a very close eye on my blood sugar and blood pressure. I’ve cut out salt entirely, which has been my saving grace in avoiding massive weight gain, but the "moon face" is still there and my body has definitely changed; I never dealt with cellulite in my life, yet now I see it even on my arms. I seem to have a bit of a resistance to it, so I suspect they'll be tapering me down soon—I'm at 60mg currently and taking a different immunosuppressant alongside it.
I don't buy into alternative medicine.

Peptoran might actually be a superior choice compared to Controloc, though I suspect you're already well aware of that...
As for me, Medrol has absolutely wrecked my stomach, and I’ve only been on it for twenty days. If one were to weigh the benefits against the fallout, the damage done to my system is currently winning by a landslide.

Drew Scott20 said:I’m taking prednisone myself, and it’s essentially the same story. To manage it, I take Controloc, calcium, Vitamin D, and magnesium, while also keeping a very close eye on my blood sugar and blood pressure. I’ve cut out salt entirely, which has been my saving grace in avoiding massive weight gain, but the "moon face" is still there and my body has definitely changed; I never dealt with cellulite in my life, yet now I see it even on my arms. I seem to have a bit of a resistance to it, so I suspect they'll be tapering me down soon—I'm at 60mg currently and taking a different immunosuppressant alongside it.
I don't buy into alternative medicine.

Man, the highest I ever went was 40 mg of prednisone. I looked like a balloon. Now that I'm down to ten, I feel like a completely different person.

Mark Lopez3, steroids are a heavy-duty tool—there's usually a very serious reason why they're being prescribed in the first place. If you're dealing with significant side effects, you absolutely need to talk to your doctor about them as soon as possible. I really wouldn't recommend trying to adjust anything on your own.

As for alternatives—if any of those methods actually worked, we wouldn't be calling it "alternative medicine," would we? It would just be called medicine.

Mark Lopez3 said:Peptoran might actually be a superior choice compared to Controloc, though I suspect you're already well aware of that...
As for me, Medrol has absolutely wrecked my stomach, and I’ve only been on it for twenty days. If one were to weigh the benefits against the fallout, the damage done to my system is currently winning by a landslide.

Peptoran isn't "better." It just lowers stomach acid. PPIs—which includes stuff like Controloc—actually coat the stomach lining to protect it. If you're taking steroids and just using Peptoran (some doctors suggested Gastal 😁, but honestly, if they want to push steroids alongside Gastal, let them see how I feel in a month), it's no wonder your stomach is getting destroyed. Ask for Controloc, Nexium, or something similar. Tell them what you're taking isn't cutting it.

melloworca6 said:Peptoran isn't "better." It just lowers stomach acid. PPIs—which includes stuff like Controloc—actually coat the stomach lining to protect it. If you're taking steroids and just using Peptoran (some doctors suggested Gastal 😁, but honestly, if they want to push steroids alongside Gastal, let them see how I feel in a month), it's no wonder your stomach is getting destroyed. Ask for Controloc, Nexium, or something similar. Tell them what you're taking isn't cutting it.

I wasn't aware of that distinction. I had assumed the difference lay in the duration—that Controloc provides 24-hour coverage through its mechanism while Peptoran lasts maybe 12 hours? Given that I am currently battling issues with both my thyroid and my stomach, I figured Peptoran might be the more logical choice.

I find it impossible to accept a "treatment" model where the only way to fix one issue is to systematically dismantle every other vital organ—take the stomach or vision, for instance. Furthermore, it seems fundamentally wrong that a doctor wouldn't mandate a vision check before starting someone on Medrol or antimalarials; it feels like a massive oversight that no one is held accountable for. There has to be an alternative that doesn't involve such collateral damage.

I’m dealing with gastritis and thyroid issues myself, currently on a cocktail of steroids and antimalarials. I’ve been taking Nexium every single day for years just to keep the steroids from absolutely shredding my stomach lining.

I don't know what your specific diagnosis is, but I tried pushing the alternative route for as long as I could without meds. It backfired. I ended up hospitalized on pulse therapy because my CRP levels spiked over 100. Damn. Even alternative medicine has its limits.

Ask your doctor for an ophthalmology referral; they have to give it to you. Personally, I keep nagging mine to check my B vitamins, since all those stomach meds tank your absorption. She hasn't pushed back yet (though I have to be the one to bring it up—God forbid she actually remembers to double-check things on her own 🙄), but if things start acting up, I’ll just pull the info right off the pill bottle and read it myself if she’s clueless. She really should know better; not many people can handle being on stomach medication indefinitely.

I’ve been diagnosed with SLE and hyperthyroidism. It’s a good thing you brought up the Vitamin B deficiency; otherwise, I almost certainly would have overlooked it. As for the ophthalmologist, I’ve decided to go private—I am frankly exhausted from the endless waiting rooms and the bureaucratic runaround at the local clinics.
Leeloo27, what kind of alternative approach were you advocating for, and how long did you stick with it?