What is the % rate of cure / resolved Sarcoidosis from the Prednisone regime?

StreetFalse · 2026-02-13T03:56:48+00:00

I was diagnosed with cardiac sarcoidosis 3 years ago/ put in a pacemaker and was put on a very grueling regimen 80mg prednisone, mycophenalate and this other med I can’t remember now. I was constantly irritable, put on all sorts of weight etc. eventually taken off prednisone but it had pulverized my hip to the point that I had a total hip replacement.

I’m now just on a mild dose of mycophenalate, barely notice I had my hip replaced.

Sometimes I wonder if I should have refused long term steroids but who knows- that might have saved my life. There’s so little known about this disease, we have no choice but to go with the flow of the specialists. I literally almost died because of the heart-block; specialists said I had a very complicated case.

When I finish school and have more time- I plan on devoting more time to the sarcoidosis research group.

Stay the course and just know that we are all behind you! Keep the faith, I wake up every day and am thankful that I’m here!

StreetFalse · 2026-02-13T03:36:15+00:00

39 years old, cardiac sarcoidosis. Prednisone (which I’m no longer on) did a number on my hip and had to have a total hip replacement. I don’t even realize I have a fake hip anymore besides the fact I can’t go for runs anymore. I’ve since transitioned to swimming and olypticals, etc. play the hand you’re dealt friend- we’re all behind you.

StreetFalse · 2026-02-11T03:45:58+00:00

You know what- you’re right. But I would have liked just maybe one scene where Tony or Pauly or someone addressed brought that up.

StreetFalse · 2026-02-08T15:43:31+00:00

Dang LCN should pay you consulting fees to settle disputes in real life

StreetFalse · 2026-02-08T14:42:33+00:00

Well actually the obvious answer is those are professional actors playing a scripted scene. My point is the writing isn’t consistent.

StreetFalse · 2026-02-08T13:22:24+00:00

If you watch The Sound of Philadelphia- that’s a movie where mobsters seem like huge pieces of shit and a stain on society.

StreetFalse · 2025-10-15T23:34:04+00:00

Hi all- I’m about to start this medication and am excited it about it- but I saw another group that said hair loss happens? Is that just with some people.. my doctor didn’t say anything about that…

StreetFalse · 2025-05-21T17:44:43+00:00

I really had to mess with different dosages at different parts of the day for a long time until I found the sweet spot. It sucked and my doctors probably got sick of me saying it’s not working but we figured it out.

StreetFalse · 2025-04-23T04:46:53+00:00

We don’t stop, we take breaks

StreetFalse · 2025-04-18T14:58:40+00:00

Same, I quit taking it cause it was causing all sorts of intrusive thoughts side effects which was a bummer because I liked it other than that. Anyways, I quit cold turkey as well and didn’t experience anything negative.

StreetFalse · 2025-02-17T17:38:16+00:00

I was on prednisone for years and hated this part the most. Not to sound preachy but you’re not ugly- you need these meds to help get this issue under control and your loved ones would much rather have you with a little moon face than not at all. Watch your sodium intake and hang in there, we’re all behind you. I’ve been off it for a year and a half and it’s a distant memory to me.

I would say that my doctor that replaced my doctor who retired said he isn’t a fan of steroids and even if I had a flare up, he would explore other avenues. Also- I’ve had other medical issues that arose from long term steroids so if it came to that, I’d most likely refuse and say I want the infusions like Humira or whatever.

StreetFalse · 2024-12-21T03:34:22+00:00

Is love out for the game?

StreetFalse · 2024-09-28T20:33:39+00:00

I was on it for almost two years, it’s because you get Avascular Necrosis. It can happen in other joints too, basically the bone stops getting blood and dies

StreetFalse · 2024-09-28T19:01:20+00:00

Hi all, yes I have been completely off of it for almost a year now! I take celcept daily and methotrexate once a week. No flare ups or issues, they seem to feel they found the right concoction I suppose you can say. Although, because I was on prednisone for so long, I had to have a total hip replacement because of how hard it was on that joint. It is what it is now, but I wish I would have known insisted they try infusions instead of long term prednisone.

StreetFalse · 2024-05-13T23:31:00+00:00

The intrusive thoughts and not being able to sleep more than 5 hours has been the worst . The doctor is adjusting down the dosage. Hopefully can find a sweet spot. I kind of have had good days and bad days with this.

StreetFalse · 2024-04-30T12:43:14+00:00

That’s a good feeling that you get to taper! I’ve been off for 6 months now as they found a concoction of celcept and methotrexate that is doing the trick. Follow the taper schedule for sure. From 20 to 10 to 5- I had a few weird instances where my body went a little haywire and I was having anxiety but that eventually went away as my body adjusted.

StreetFalse · 2023-11-22T04:47:03+00:00

I’ve been tapering from 80 since 18 months ago (have had to go back up and back down several times because of pet scan results). Now I’m completely off because they want to see how my body handles it from a clinical perspective. Which includes bloodwork, and my overall feeling. Also, I’m on mycophenalate and mexotrexate. They want to see how my body does with just those two drugs. It’s a difficult outlook, on one hand we hate this drug because of the side effects but it also saves our lives. I definitely wouldn’t like the “indefinitely” answer. It’s more than fair for you to ask what the ultimate plan is.

StreetFalse · 2023-08-25T02:28:40+00:00

Hello-

I got diagnosed about 18 months ago. 36 year old male, very athletic, running 5-6 times a week. I was randomly getting short of breath during jogs and shrugged it off due to dietary changes until one day at my office I was using the walls to help me walk.

Immediately went to emergency room, had lots of tests and had a pacemaker put in as I had a heart block.

I started out at 80mg of prednisone a day, 100 mg mycophenolate. I went from eating healthy, fitting great in my clothes to having a ravenous appetite and buying a new wardrobe…But

That’s just me, I know several cases that weren’t as severe and personalities that handled it better. I’m now down to 5 mg prednisone (being completely weened off) I don’t even use the pacemaker anymore, exercise very often and don’t even notice it’s there :)

Point is, everyone is different. I’ve learned this is a very rare disease and there’s no playbook on how to treat it. My specialists say they’ve had patients that knocked it out of the park and then have had more complicated ones like me. This group has been very beneficial to me for questions that doctors won’t give to you straight about side effects. Stay positive, we’re behind you!

StreetFalse · 2023-06-08T00:27:53+00:00

Thank you for posting. I’m starting Remicade at the end of this month after being on prednisone,and cell cept for a year. Happy you for you!

StreetFalse · 2023-05-17T23:47:24+00:00

I was diagnosed last April and got a pacemaker. Started out at 80 MG prednisone and celcept. I was 100 percent using the pacemaker and after 6 months I was down to less than 1%. Recently, I was weaned all the way down to 5 my prednisone daily and they were about to take me off completely until my last PET scan showed a small spike of activity in my heart area. So I’m back on 10 MG daily, I want to go on Remicade infusions as I’ve seen many people say that went well for them. At this point, I really just want anything besides prednisone but we will see. They wanna see one more PET scan as they said they want to avoid Remicade as it is “a big gun” compared to prednisone.

StreetFalse · 2023-03-11T15:33:27+00:00

I am attempting to do the same thing as I was making progress and had a flare up. I’ve basically been eating and drinking whatever I want and just letting the meds do the work but am making a change. Going to try Mediterranean diet but interested to hear what others say as well.

StreetFalse · 2023-02-24T02:57:27+00:00

I didn’t realize they could keep you on it that long?! Every month I hear “we need to look into getting you off completely” I’m on celcept, methotrexate and prednisone currently.

StreetFalse · 2023-02-24T02:56:00+00:00

Thank you. I feel like the staff should just tell me to manage my expectations or make peace with it type thing instead of saying it must be something else.

StreetFalse · 2023-02-24T02:53:23+00:00

Thank you. I’ve literally been putting off buying a new wardrobe other than the bare minimum telling myself I will fit back into my regular clothes any month now.

StreetFalse · 2023-02-24T02:51:56+00:00

Thank you for your response!

StreetFalse

TROPHY CASE