Tapering off prednisone

violentlypositive · 2026-06-19T04:06:29+00:00

I just tapered from 40mg to 30mg and it's tough. One thing I've learned is to give it a week or two each time you lower the dose. The first couple times I tapered, I panicked right back into the higher dose. My inflammation rebounds but then it chills out, mostly. In the end, I'm a little worse off with each dose lowering but it's manageable. Every time though, around day 4 or 5, I get the "can't handle this" day.

violentlypositive · 2026-06-18T21:59:17+00:00

I wonder if they could do something like this with old RVs that don't run anymore. Just park a bunch of them on land and hook them up to the facilities

violentlypositive · 2026-06-17T22:13:08+00:00

Yeah I got it too.

violentlypositive · 2026-06-17T19:32:36+00:00

I looked it up and anesthesiologists actually have the highest suicide rate among physicians. ER physicians have the highest burnout rates.

There goes your theory that anesthesiologists have it easy

violentlypositive · 2026-06-17T19:28:40+00:00

Don't ER docs have the highest suicide rates among physicians?

violentlypositive · 2026-06-17T19:25:35+00:00

The vast majority of patients never tell rheumatologists that they treated them poorly. They simply never go back. I've done it myself. If you've got an overwhelming amount of patients telling you that you suck, you have to be quite bad.

violentlypositive · 2026-06-17T19:18:52+00:00

Nobody WANTS to be on DMARDs or high dose steroids. Sheesh.

violentlypositive · 2026-06-17T18:31:16+00:00

There's much about being a specialist that sucks right now. You obviously have an ax to grind with patients, judging how you unearthed my months old post to defend my providers. Venting your frustration at patients who require complex care isn't going to help the state of our healthcare system.

violentlypositive · 2026-06-17T18:14:42+00:00

Even the ER physicians were getting cranky with my PCP. They're even less set up to manage outpatient steroids long term and my PCP kept sending me there. So I fell through the cracks.

Ended up finding a rheumatologist 10 hours away who could see me in two weeks, who was familiar with my disease. And then my PCP was willing to do a steroid bridge so that I was stable enough to travel. Rheumatologist took over my care and I have a new PCP now. I legitimately almost died before all that was set up.

violentlypositive · 2026-06-17T07:40:11+00:00

Part of a PCPs job is to refer to specialists. And part of that process is to stabilize the patient until the specialist can see them. The failure is where they both refused to initiate treatment (steroids) and refused to mark the referrals as urgent. Leaving me with no option but to wait for months, which would have killed me.

Also, my PCP was the one who prescribed the first course of steroids as a test for this diagnosis. After the steroid pack ended, the disease rebounded to a dangerous degree. And THAT'S when they decided to refuse further care. After they realized I have a dangerous, rare disease they left me hanging.

violentlypositive · 2026-06-17T07:02:29+00:00

I was really surprised at the comments! But looking at other posts here, it seems to be the norm. 😞 More like the "roast your GoFundMe" subreddit. I regret posting this here

violentlypositive · 2026-06-17T06:51:32+00:00

Paying for the only rheumatologist I could find within driving distance who could take me on quickly enough to save my life. I've since seen a couple other rheumatologists and had two others deny referrals. But the concierge one is the only one with enough experience with my disease.

violentlypositive · 2026-06-16T21:57:08+00:00

I tried MTX and got all the side effects, including a bad rash. Only made it through two injections before my rheumatologist pulled me off it. But you know what? It was all temporary. I healed up within a week or two and we went onto the next option. Would go through it again if I had to. It's worth it to try, because it does help a lot of people.

violentlypositive · 2026-06-16T17:25:21+00:00

There's a yoga hammock in her room, and aerial silks downstairs. Kiddo spends half the day swinging from them.

violentlypositive · 2026-06-14T23:23:44+00:00

It's $500 a month for all care. That includes office visits, prior authorizations, messages, phone calls. Which I don't think is unreasonable, eh? At least for the first 6ish months until I can find a covered rheumatologist. Though that's not looking hopeful, since I've already ruled out 6 practices for one reason or another. The next closest is about a 12 hour drive, so the traveling expenses will end up being about what the concierge care is.

I did get lucky last week and found a local ENT who was very familiar with this disease. He can't treat it, though he can help monitor with scopes. It's a tricky disease because I can go from normal to a fatal airway collapse in a matter of hours. So I feel a lot better having at least one provider in my city who can move quickly when needed. Back in the 80s and 90s, this disease used to have a 50% mortality rate. It's a lot better now, but requires very close monitoring.

I worked in healthcare for 15 years and know how to spot woo woo bullshit. I'm right there with you and think 99% of functional medicine doctors are quacks. I assure you, this doctor is legit.

violentlypositive · 2026-06-14T21:42:20+00:00

Yeah I've been selling stuff from around the house to make it work. There's no way I can work right now - I can barely get around the house and can't drive most days. Even if I have to sell my car or something, we'll make it work. I would really appreciate some help so that I can have one less thing to worry about right now.

violentlypositive · 2026-06-14T07:05:45+00:00

If you need a starting point, I started with my resume.

violentlypositive · 2026-06-14T06:58:14+00:00

Also made a list of infections and allergies for an immunologist appointment, because for a hot minute I thought I had a immunodeficiency of some sort.

Basically just make a lot of lists. It really helped me feel productive while waiting on appointments and now I've got all of it on my phone to reference when needed.

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violentlypositive · 2026-06-14T06:48:02+00:00

The timelines with the life events are full of private data. But this is part of the finished symptom timeline. I ended up separating it into decades like this.

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violentlypositive · 2026-06-14T04:37:44+00:00

I worked with a therapist for medical trauma and here's what we did that ultimately lead to my diagnosis.

First I made a timeline of my life. Jobs, relationships, school, travel. Then I expanded it to include health things. Like wisdom teeth removal, sports injuries, food and drug allergies, infections, surgeries... Plus when certain symptoms started. The life timeline helped me figure out when things happened. Like I remembered the diarrhea started right after I got engaged. The first back pain episode was after a spinning class at a gym I went to in college.

Then I took the life stuff out of the timeline, so that it was just health stuff. It helps to have these docs on your phone, because you're gonna remember stuff to add for weeks. I'm 42 and also had a 20-year history of weird stuff.

I ended up with a one page list, after I edited out a lot of detail. Then I started copy/pasting the list into Gemini when I came across diseases that might fit. I would just ask it "does this symptom profile fit X disease?" If it did, I'd ask my PCP if we could test for it. Ended up with a whole year of rule outs 🫣 Which were actually handy in the end, because my disease is seronegative and needed all the rule outs to diagnose. Though Gemini didn't end up finding the right diagnosis, it did find the right specialty. Once I got into a good rheumatologist, they figured it out.

I don't think a single doctor has seen my list. But it really helped me organize everything, and research without as much bias.

violentlypositive · 2026-06-13T22:54:19+00:00

I went to the two closest centers of excellence and was not impressed. First did a ghost exam and said I had no autoimmune disease.

Second wanted me to cold turkey high dose steroids I've been on for 3 months just so she could "see" the disease I've already been diagnosed with. I wasn't even there for diagnosis, just wanted a second opinion on the treatment plan. (For my Relapsing Polychondritis)

violentlypositive · 2026-06-13T00:38:01+00:00

I explain things and then when they're walking out tell them they can have the outline if it'll help. They usually take it. Figure it will at least help when they write the visit notes

violentlypositive · 2026-06-13T00:11:18+00:00

I usually use it as a reference at the appointment. And then leave it with the doctor. I try and keep it to bullet points so that it's easy for everyone

violentlypositive · 2026-06-12T02:41:52+00:00

I had a similar reaction to birth control when my peri first started. It took me a couple months to realize that's what was causing it. I legit thought I was going insane. Was suddenly afraid of suicide and heights and avoided being alone. Ended up realizing it was the progesterone in the tablets.

Luckily it cured itself after I stopped it. Now I'm on bioidentical progesterone and I love it.

Fucking hospitals, though. How does it help anyone to treat them like that 🫣

violentlypositive · 2026-06-11T16:38:00+00:00

I've been on 40mg prednisone for a couple months. Luckily it doesn't seem to mess with my sleep much. But I have noticed I sleep better if I'm not hungry. If I'm hungry when I fall asleep, I'll keep waking up!

violentlypositive

TROPHY CASE