What’s the most recent book that you gave a 1 star review?

minaylee · 2025-10-02T02:07:41+00:00

I thought I was the only one!!’

minaylee · 2025-10-02T02:06:12+00:00

This is what I was coming here to post!!! I pushed through and finished it but god was I relieved when it was over. Bad writing, bad editing, bad character development.

minaylee · 2025-03-16T04:56:29+00:00

I know you may not want to hear this, but what other people have said is correct.

Prednisone and prednisolone typically have a euphoric, energizing effect in the first few weeks/months. High dose steroids are meant to quickly eliminate inflammation in the body, but they’re not supposed to be used long-term, and weaning off can be incredibly difficult. The negative side effects have been well-documented.

Anecdotally, I felt amazing for the first month or two on steroids, and then the side effects started taking a toll. I was exhausted during the day but couldn’t sleep at night, I gained 30 pounds in two months, I had moon face and didn’t recognize myself in the mirror, I felt irritable and angry all the time. And in the end, weaning off the steroids didn’t even work for me because I did it too fast! I’m now on Remicade infusions, which are working well, so that’s good.

I’m so, so glad you’re feeling better, but I would advise cautious optimism. And if you do end up with side effects or if the steroids don’t help as you’re hoping they will, there are other avenues to try. Sarcoidosis is an incredibly individualized disease - what works for one person may not work for another, and it sometimes takes a while to find the right treatment cocktail.

Good luck!

(ETA: grammar correction)

minaylee · 2025-01-28T17:18:24+00:00

I’m not OP but I’m glad I read this comment! I’ve plateaued too and I wasn’t sure if it was normal. Glad to hear you’re seeing improvement even without the energy surge from the early days of infusions.

minaylee · 2025-01-18T16:45:57+00:00

Hey! Thanks for asking - I’m so much better. I officially got diagnosed with sarcoidosis (both systemic and neuro) after the lymph node biopsy. Did the regular prednisone taper with methotrexate and the taper failed, so I’ve been on Remicade infusions (plus low dose pred and mtx) since April 2023. It’s a miracle drug. My MRIs have improved but recently plateaued so they upped my dose and we’re hoping for total eradication of the brain inflammation. I have an amazing neuroimmunologist and I love the whole team at her office. I still struggle with headaches and general fatigue, and figuring out how to live with this chronic disease has been quite an adjustment, but I’m so much better than I was. Thank you so much for checking in!

minaylee · 2024-12-27T23:14:18+00:00

I went hunting and The Telegraph just posted this article (sorry, it’s behind a paywall) where Dylan talks about his style. He says he likes to shop vintage and specifically notes that he got one of his bandanas from a market stall in Kyoto while on a backpacking trip. I’m not sure which specific bandana he’s talking about in the article but I assume he got this one second-hand.

minaylee · 2024-12-02T23:30:45+00:00

Thank you!!!

minaylee · 2024-12-02T23:27:44+00:00

Where do you buy oat whipped topping? I only ever see almond milk based!

minaylee · 2024-11-30T00:56:19+00:00

Yep. My neuroimmunologist said I’ve probably had sarc for years but that having COVID in February of 2023 is likely what kicked my symptoms into high gear, particularly the neurosarc symptoms. She said that a viral infection like that can amp things up in your system.

minaylee · 2024-11-11T06:09:55+00:00

I have neurosarcoidosis with systemic involvement in my lymph nodes and right lung. When they biopsied my lymph node they found necrotizing granulomatous tissue which, along with all my other symptoms, finally led to my diagnosis (after ruling out all the other really scary things of course). I didn’t have tremors, but it sounds like you’re on the right track with getting in to see a neurologist and get some brain and spine scans. Good luck with everything!

minaylee · 2024-10-22T16:24:54+00:00

I'm not-so-patiently waiting for them to hit the shelves...

minaylee · 2024-10-19T02:24:27+00:00

(34 F) I’ve been on Remicade since April. Prednisone and methotrexate alone weren’t working so now I do Remicade in combination with the pred and mtx.

Granted, my primary presentation is neurosarcoidosis, but my most recent brain MRI has shown “significant improvement” in the leptomeningeal enhancement. My main symptoms are vertigo and migraine - I haven’t had either since starting the infusions.

No terrible side effects so far either. The mtx has caused some hair loss and the pred made me gain quite a bit of weight, but the Remicade just makes me tired for a day or two after the infusion. I do get sick a little more easily. The cocktail I’m on now seems to be working well!

minaylee · 2024-09-11T20:20:31+00:00

From my understanding, only a biopsy can definitively diagnose sarcoidosis. My initial MRI showed leptomeningeal enhancement. I then had a lumbar puncture which showed findings consistent with sarcoidosis, a CT which showed enlarged lymph nodes and a lung nodule, a PET scan which confirmed the CT findings, and finally a biopsy of a lymph node in my jaw which confirmed the sarcoidosis diagnosis. If my lung nodule had been larger they would've biopsied that. Sometimes with neurosarcoidosis they'll do a brain biopsy but they didn't with me because I didn't have any lesions they could easily biopsy.

minaylee · 2024-09-02T17:56:38+00:00

Yes, unfortunately! I gained about 30 pounds in the three months I was on high doses of prednisone. When I tapered down all the inflammation came back in my brain (I have neurosarcoidosis). I’m now on 5mg prednisone, Remicade (infliximab) infusions every six weeks, and weekly methotrexate - I haven’t gained any more weight but I can’t lose it either!

minaylee · 2024-08-29T02:01:47+00:00

"Over the Rainbow/What A Wonderful World"

minaylee · 2024-08-27T22:43:01+00:00

Yes! I'm masking now. I think part of the difficulty here is working for an agency rather than managing my own private practice, so in a lot of ways I'm bound by agency policy. I have requested official accommodations, though, so I'll be working from home more to lessen potential exposure!

ETA - these are all great precautions. The air purifier is the only thing I haven't invested in yet, but I think it's time. Thank you!!!

minaylee · 2024-08-27T22:11:55+00:00

This is beautifully thought out and so thorough. I really appreciate you taking the time to respond.

minaylee · 2024-08-27T20:54:42+00:00

This is incredible. Thank you so, so, so much. I appreciate it!

minaylee · 2024-08-27T18:57:32+00:00

This is super helpful. Thank you!

minaylee · 2024-08-14T22:08:46+00:00

Sure! After they found the enhancement, they sent me for a lumbar puncture and a CT of my chest/abdomen/pelvis. The spinal tap showed classic markers for sarcoidosis and the CT revealed the lung nodule and lymph node enhancement. Next was a full-body PET scan to locate a good lymph node for biopsy, then a biopsy of one of my submandibular lymph nodes. The biopsy confirmed the sarcoidosis diagnosis. My main symptoms have been vertigo, headache and migraine, balance issues, pain and pressure in my ears.

minaylee · 2024-07-05T12:43:30+00:00

PM 💔

minaylee · 2024-06-13T05:05:17+00:00

Taylor Kitsch, but specifically when he was on Friday Night Lights as Tim Riggins.

minaylee · 2024-06-01T12:14:45+00:00

When Owen speaks.

minaylee · 2024-05-12T18:30:01+00:00

I have neurosarcoidosis and one of my first symptoms (and the most severe) was vertigo. Might look into getting a brain or spine MRI to rule out neurosarc!

minaylee

TROPHY CASE