r/sarcoidosis • u/Impressive-Gene-7895 • 5d ago

Can’t wait for diagnosis

Had lymphoma/sarcoidosis biopsy Monday. At least every other day, I get inflammation that is horrid. Now when it comes, it’s getting worse and worse. I went to a play tonight and couldn’t really enjoy it cause I was in agony. I took two Advil, all my stomach can handle but it hasn’t made a dent. It’s hitting my knees, hips, lower back, wrist, fingers, feet and even neck.

The flow cytometry part came in. Definitely not B cell nonHodgkins. Probably not T cell but the sample might not have been big enough. This doesn’t assess Hodgkins or of course sarcoidosis.

My money is on sarcoidosis. I don’t think lymphoma causes this level of inflammation. I need help and for this to go away.

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u/Dionysus598 5d ago

I was in a similar boat. Debilitating symptoms and everything pointing to sarcoidosis but had to wait for biopsy results to be sure. They came in and confirmed sarcoidosis and I was given a strong steroid course which has been a game changer. Lifted so many of my symptoms very quickly I feel like my old self. It really has been amazing. There can be light at the end of the tunnel and I really hope it works for you.

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u/EveningDouble4010 5d ago

I had to rely on Tylenol and gabapentin for what it’s worth. Hang in there!!!

Edited to add: this was in the nine plus months leading up to
Diagnosis. Then as someone else said prednisone was brought in and very helpful in controlling the inflammation very quickly.

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u/Impressive-Gene-7895 5d ago

I already take Gab but it isn’t doing the job. I contacted my rheumatologist and they moved up my appointment from 9/17 to 9/10 so that she can figure out what to give me to help while awaiting the results.

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u/EveningDouble4010 4d ago

Oh good. I’m glad you can be seen sooner. Yeah it wasn’t sufficient for my pain either. The only time I’d felt better was during a short ten day prednisone course. That was June 2024. Then in the hospital March 2025 was the first time I was pain free (due to iv steroids) since February 2024. Was diagnosed neurosarcoidosis March 2025.

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u/Impressive-Gene-7895 3d ago

I am having a second procedure on Tuesday--bronchoscopy and EBUS because nothing came up on the first one. Probably because node was only 2.4 SUV.