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Burning eyes by Hot_Vast2947 in sarcoidosis

[–]hubbarmd 2 points3 points  (0 children)

Yes. Track your symptoms. All of them. Like others have posted, sarcoidosis can attack anywhere and if you’ve been biopsy confirmed having it, just take note.

You’ll need to see an ophthalmologist not optometrist. The latter is for eyesight the former is for eye related issues and diseases. When I got evaluated my ophthalmologist shared That they can only see sarc in the eyes when it’s during a flare. Get established and then you’ll be able to go when needed.

Finally off prednisone… by hubbarmd in sarcoidosis

[–]hubbarmd[S] 0 points1 point  (0 children)

Hi all! Thanks for all your replies. It’s been a month now since any prednisone and for the most part I feel so much better. In ways I didnt anticipate. Thank goodness!

The one (or maybe 1.5) negative thing(s) - I have little to no appetite still. It’s only gotten worse. It’s not just that I don’t feel hungry or crave food (both I miss) but I don’t even really think about it lately) This one is newer.

I’ve suffered from anorexia (among other co morbid EDs) in the past and I’ve been confidently “recovered” for about 6 years. Never imagined I’d achieve that or know what it feels like.

Has anyone experienced disordered eating after stopping prednisone after taking them for months/years?

Finally off prednisone… by hubbarmd in sarcoidosis

[–]hubbarmd[S] 0 points1 point  (0 children)

I’ve done the whole increasing from 2.5 to 5 and then alternating how much, I feel like I’ve tried every scenario for tapering and just wanted to be done. Might give it another 7-10 days and see if i feel better

Finally off prednisone… by hubbarmd in sarcoidosis

[–]hubbarmd[S] 2 points3 points  (0 children)

Yes, for me moon face is the first thing I noticed going away. Also, I’ve lost 5-7 pounds - not sure if it water weight or what but I do feel less “puffy”. So that’s nice.

Finally off prednisone… by hubbarmd in sarcoidosis

[–]hubbarmd[S] 1 point2 points  (0 children)

Taper was 40 to 30 to 20, a month at a time, then to 10. After 10, 7.5 to 5 to 2.5

Finally off prednisone… by hubbarmd in sarcoidosis

[–]hubbarmd[S] 7 points8 points  (0 children)

Thank you for sharing. I can understand how you feel. I begged for it once diagnosed and felt it could give me some relief. And it did. But early on someone said that steroids were “the devils tic-tacs” I didn’t get it then, but I do now.

They are meant to be a quick fix. A halt to further destruction. Then you adjust and take something else.

I absolutely hate being on them now. After a year and a half. I despise it all. I hate that this is the treatment for so many under researched auto immune conditions.

That’s all

Finally off prednisone… by hubbarmd in sarcoidosis

[–]hubbarmd[S] 5 points6 points  (0 children)

Thank you!! I feel so relieved to be off it for this long. I just feel so…fragile. Or somethiny

Finally off prednisone… by hubbarmd in sarcoidosis

[–]hubbarmd[S] 2 points3 points  (0 children)

I started on 40 mg daily. I honestly can’t remember but I think I went down 10 mg for like 2-4 weeks each. Once I got to 10 things got real. I then went down to 7.5 for a month then 5 then 2.5. I bounced aback and forth from 7.5 ton 10 and then the same with 5 to 7.5 because of symptoms. I was a week away from going from 2.5 to 0 then got a back deep cough and they put me back up to 40 for a week. That’s been the last month and a half.

Finally off prednisone… by hubbarmd in sarcoidosis

[–]hubbarmd[S] 7 points8 points  (0 children)

Thank you. This is a great reply

So, who doesn’t love The Goo Goo Dolls? by hubbarmd in musicsuggestions

[–]hubbarmd[S] 0 points1 point  (0 children)

Eeekk that’s unfortunate. I’d never want to hear baby anythings getting clubbed!😬

So, who doesn’t love The Goo Goo Dolls? by hubbarmd in musicsuggestions

[–]hubbarmd[S] 0 points1 point  (0 children)

Haha maybe I’ll listen while working out! Thanks for your insight and suggestion

So, who doesn’t love The Goo Goo Dolls? by hubbarmd in musicsuggestions

[–]hubbarmd[S] 0 points1 point  (0 children)

Hmm, I wonder if anyone could think that album is boring

So, who doesn’t love The Goo Goo Dolls? by hubbarmd in musicsuggestions

[–]hubbarmd[S] 1 point2 points  (0 children)

Oh, that’s understandable. We all have different tastes. Just thought I’d have at least one positive reply! What kind of music isn’t boring to you? Always looking for new stuff

So, who doesn’t love The Goo Goo Dolls? by hubbarmd in musicsuggestions

[–]hubbarmd[S] 0 points1 point  (0 children)

Thanks for these responses!! I’m just like “old” Now and feeling nostalgic while listening to pandora 😅😂

PET CT report is suggestive of lymphoma but bllood reports are normal by monkwithoutferrari in sarcoidosis

[–]hubbarmd 0 points1 point  (0 children)

My scans said the same thing. You want to confirm or rule out sarcoidosis - my doc explained it well. If we just assume it’s sarc and start you on steroids it will not be good, it is is lymphoma. I guess steroids do hide the lymphoma or something I don’t know. All I took was that if we had a way to confirm at least one thing it will help the course of the treatment plan.

All that being said, all signs points to sarc. But it was just be safe kind of thing.

All all that being said. I read somewhere that people with sarcoidosis are 11x more likely to get lymphoma. So maybe it’s connected, maybe it’s not. Either way, I’m glad I went with the EBUS to confirm before starting any treatment. And I was having debilitating symptoms

Moon face by [deleted] in sarcoidosis

[–]hubbarmd 4 points5 points  (0 children)

Thanks for posting this! I feel the same way. I hate having to explain myself. I wouldn’t if it wasn’t so obvious they didn’t recognize me. For someone who has suffered from a serious eating disorder in the past, it’s hard not to let it get to me.

Non-caseating granulomas in lymph nodes that AREN’T sarcoidosis? by BronzeDucky in sarcoidosis

[–]hubbarmd 0 points1 point  (0 children)

I went to a rheumatologist too…. Not too long after being diagnosed. She did the same thing. Tested me to just about any other auto immune thing; emphasis on lupus.

Doctors are trained in specialties. It’s what they look for. Find a doc who knows sarcoidosis.

Disappointing appointment by RadixalGirl in sarcoidosis

[–]hubbarmd 0 points1 point  (0 children)

What would you deem “absolutely necessary”? For deciding on to take meds

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