While doctors are loathe to throw each other under the bus, it sounds like you need a second opinion.
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You need a second opinion. Cold turkeying off steroids is a bad idea at best, dangerous at worst. I am not sure at all what they were thinking, but it wasn’t with your best interests at heart.
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We talked about it, she apologized. It sounds like the decision came from the attending, but she explained that until I can work in this rheumatology visit we need to keep an open mind, considering the autoimmune disorder possibility.
“Query C-ANCA vasculitis vs idiopathic interstitial pneumonia (ANCA-IIP). Leaning towards vasculitis given hx of nasal polyp. Will order referral to Rheum.”
I think I’m ok so far with her logic, given that I had been tested for EGPA/Churg-Strauss syndrome ten years ago and had some similar symptoms. I remember very well the pain in my knees that was making it difficult to walk.
I’m getting another blood test in the morning, and she’s going to consult with the attending before I return for a follow-up on Wednesday.
ALSO: Getting the shoulder mole cut out on Friday at the hospital in La Jolla, and a 23-hour observation before they release me. The moles are melanomas, but they’re calling them stage 1A.
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NEWS:
The doctor called this morning and ordered me to get my butt to the hospital and get myself admitted. They’ve given me a diagnosis of vasculitis, likely Churg-Strauss Syndrome.
I’m trying to tidy up a bit before I go. I had a heads up this time, so I’m prepared to drop off a key with Samantha and I will be sure to bring my tablet so I can communicate with ya’ll.
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Good luck at the hospital! It would be nice to get some answers and an effective treatment plan.
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I do hope you will be feeling better soon and that the medicos can expedite it!
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Ten years ago, the outlook used to be about 5 years, I think. Hopefully it’s much better now.
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A quick google search indicates that with proper treatment (steroids, unfortunately forever) a normal lifespan is very likely.
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Kinda scary, but things moving forward towards treatment is good. I wish you the best and stay in good spirits. If you need someone to talk to please reach out
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Welp, listen to your doctors and get to the hospital and let us know how you’re doing once you’re there.
I’m really sorry that you’re going through this and am thinking good thoughts your way.
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Yes, the doctor thinks maybe something stronger than low dose Prednisone. I think that’s why I’m here for tests.
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I have my own little suite with a shower in the bathroom at the richie hospital. I chose La Jolla over Chula Vista.
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Well, who wouldn’t?
Not bad at all, that suite. Kinda hotelesque until you get to the funky bed.
Get yourself sorted and well. We want you to be all healthy and happy, Sugarplum.
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Ok, I spoke to the pulmonology specialist and he agrees with the diagnosis of vasculitis, Churg-Strauss, and interstitial fibroid lung disease.
He’s immediately got me back on methylprednisolone (IV liquid form) and I have another bronchoscopy on Friday to harvest some lung fluids. Tomorrow I have a live x-ray “barium tasting” to see if any food or liquids are accidentally getting into my airway when I eat. I hope the sommelier knows what he is doing.
As an outpatient, they’re still determining what I’ll do, but the pulmonologist is considering injection therapy for my asthma symptoms.
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Some answers! Or at least good possibilities. And getting back on the methylprednisolone may help you feel better quickly.
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That’s what I’m hoping. It sucks to feel infirm.
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I congratulate you on your being in a place where you are getting the care you need, that you are advocating for yourself and thank goodness are being heard, and that you do have a private room so you can sleep and eat and shower on your own schedule.
Hang in there.
Modern medicine gets a bad rap for being ham-fisted and byzantine, but for major stuff, acute stuff, life and death stuff, you are in the right place.
I am grateful you have in a literal sense and in a more metaphorical sense, some space to breathe.
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Ok, I think about 18 hours after the IV Prednisone and I’m feeling much better. Less tired, more hungry, and more pink. I still have to remain for tests, but I think the docs will see a marked improvement in all but the existing lung damage.
If Prednisone continues I think I may also be looking for constant glucose monitoring and possible insulin treatment because Prednisone raises your blood sugar through the roof if you’re not willing to give up all the sweet foods and beverages. At least that’s my understanding.
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Good thing you’re sweet enough
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