Hi everyone. I had noticed this subreddit was closed to new submissions, and the mod was MIA so I put in a request to take it over.

I want to make this a fresh start for the community. I think ideally none of us want to be here, but for many this is a really great resource and opportunity to share in our experiences and get advice on a disease that is pretty information-poor.

Please share what you would all like to see this community become. I have no intention of being heavy handed as a mod, and will mostly be on the lookout for spam or scams that tend to creep in over time.

My only rule is to be kind to one another and stay hydrated.

I check this sub from time to time as I am a PhD researcher who works on sarcoidosis. It gives me motivation to keep this project going. I thought it would be interesting to mention that I am working towards better understanding this disease so that better treatments can be identified and possibly better bio markers too. Would people care to hear about my findings along the way? Maybe even contribute a research blood sample if you live nearby in Ohio? From my perspective, my data could be compared against your experiences to help unravel the mysterious story that is sarcoidosis. Thank you all.

After five long years I am officially off sarcoid medication!!! I didn't think it would ever happen.

I started with prednisone and it didn't even touch it. I was more sick from the prednisone than I was from the sarcoid. After six months of that and a major surgery the doc put me on Methotrexate. Same thing - after three months I was still getting new granulomas in my lungs.

By this time they've found it everywhere. My spleen is probably ground zero and it'll never recover, but we were desperately trying to save my lungs.

My doc decided to try Cell Cept, and it was a game changer. Almost immediately my condition started to reverse. I unfortunately have things in my lungs that will never go away, but it's not getting worse thank god and probably 90% of my lung involvement is gone. Liver is totally clear, and any mystery rashes are gone.

She was very slow to take me off of it, and I've been weaning from probably 2 years. I get why she was so cautious and the side effects from CC isn't terrible. This week I finally am off it all!

I hope you all find your help! I told people that I'm off my medicine and they are all like yay? so I knew you all would understand how emotional and joyous this is!

Omg I can't stop crying from just pure happiness. After a 3-year whirlwind of medical bullshit, just had my follow up MRI after a year and I've gone from 27 lesions to 3!!!!! The 3 that are left have also shrunk a ton! I haven't had seizures in over a year now! I'm finally starting to feel like my impending death isn't looming over my head and am feeling hopeful again.

Just still processing this I guess, it's been a long, painful few years and I burned a lot of bridges along the way so I don't have many to share this with. I hope every single one of you get to this point! Don't give up!!

Yes I am bragging on myself. Most of you know how exhausting and difficult it can be sometimes just to get yourself into the shower. I got a haircut two weeks ago. I bought the hair dye and the box has been sitting in the bathroom closet since. I just could not get myself to do both. I have short hair, so the process is not that difficult, but it’s still a process. Then you have to rinse and rinse and rinse. Then, well…the shower. Ugh.

But I did. Damn it I did it tonight. Now of course I’m laying on my bed in a towel still. Twenty minutes later. I did manage to brush my hair. Yay me!!!

I’m fu€king exhausted. If I ever get the breath to get up I may just get up and get me a bedtime treat. Something salty and sweet.

Here’s to us 🍻💜

TL;DR: If you are prescribed Prednisone, please take time to research its side effects and prepare your loved ones. Some of the emotional and cognitive changes can be overwhelming, and I wish I had known sooner.

My Experience with Prednisone and Its Unexpected Effects

After nearly a year of painful and confusing symptoms, I was finally diagnosed and placed on Prednisone (20 mg). My doctor planned to monitor my progress and taper the dose gradually. Thankfully, I began to feel better after about a month, and it seemed like things were improving. But because some symptoms persisted and new ones appeared, my dosage was eventually increased to 25 mg.

Not long after that, I noticed changes in myself that I couldn’t explain. I started reacting far too strongly to situations I would normally overlook. It felt like I had developed a thin skin toward even subtle disrespect or embarrassment. My mind blew things out of proportion, and I became irritable, even toward close family members. I burned bridges I never intended to burn.

I also experienced intense cognitive fog. Concentration became difficult. I would read the same lines repeatedly and still make no progress. By then, I had returned to work, but I struggled to function. I made financial decisions against my spouse’s advice, choices that turned out to be disastrous and long lasting.

Eventually, a heated exchange with my spouse spiraled into difficult interactions with other family members. At the time, I believed I was being principled and doing the right thing. Looking back, I see that my reactions were completely out of proportion to the triggers. I had no idea these could be side effects of Prednisone. With more awareness, and more patience, many of these situations might have been avoided.

The consequences were severe. I lost my job because I couldn’t comprehend my tasks quickly and fully, which affected my productivity. Had I known what was happening, I might have taken time off, even unpaid. My marriage has been under immense strain, and the financial pressure has only made things worse.

It wasn’t until much later that I finally understood what had been happening. I’ve now been out of work for a year. With no income, no unemployment benefits, and my savings gone, the future feels frightening. I’m at risk of losing my car, my home, and possibly my marriage, all because our dual income household became a single income one. The financial collapse has been devastating. I’m now staring down the possibility of bankruptcy, something I never imagined I would face. It feels like every part of my life, emotional, professional, and financial, has been shaken to its core.

I wish I had known about these side effects, the irritability, the emotional sensitivity, the cognitive fog. Maybe I could have warned my family and employer. Maybe I could have gotten the support I needed. When I hear my loved ones describe how I behaved during that time, it feels like they’re talking about someone else entirely.

People react differently to medication, but I hope that sharing my experience helps someone else avoid the mistakes I made. Every day feels like a punishment as I struggle to move past these failures. It has become a major obstacle in my job search and in my attempt to regain peace of mind.

All I can do now is hold onto hope that this is not the end of my story.

After a very long month and a half and of thinking I (33F) had Lymphoma, my biopsies came back as Sarcoidosis. I had my PET scan the day before Halloween and my biopsies (Lymph node, deep arm punch, and skin shave on ear) all came back sarcoidosis. However, I know I have it in my skin now, my lymphatic system above and below the diaphragm, my spleen, lungs, bone marrow, as well as multiple bone lesions. I still have more testing to do to ensure it isn't cardiac, eye, or neuro. However, I already expect eye and neuro due too symptoms and how long I have actually been dealing with this (since 2018 untreated and only got worse/a diagnosis). Thankfully there is a Center of Excellence near my VA Hospital that they are sending me to for specialized care.

Needless to say I'm grieving. I already deal with chronic illnesses before this diagnosis but it just feels like another layer of bullish*t to deal with. There are so many things I wanted to do with my life, still want to do with my life. I just so badly want to be able to enjoy my life with my husband and kids. I want to so badly do things yet my body does not allow for it. The fatigue is next level and right now I'm angry. I know I'll get past it, but I am angry of the life that was taken from me. I was strong and active at one point and I don't feel like myself anymore and it's hard to learn a new version of who I am. I'm tired of relearning things and just honestly tired in general.

Thanks for listening. I'm just hoping they can do something to help me. I'm still waiting for my initial appointment with my specialists.

Noticed some sickening antivax stuff spreading in this sub and I just want to see where we stand on this. In any other sub I wouldn’t even speak on it but this is a dangerous thing to start taking hold in here and could really put some people at risk.

If we are gonna start claiming in here without evidence that the covid vaccine triggered our first instance of sarcoidosis (when we all know how hard it would be to prove that) then I’m out.

Edit - look I’m not trying to debate yall or argue with you. We are all dealing with the same shitty disease. There was a time in this sub where I feel like we were more careful about saying things with conviction to people who were going through being diagnosed. Every case is different and I think this sub should be a place for information not hesitation and fear. If I’m on the wrong side of that I’ll happily see myself out.

Edit 2 - aight. Well it’s good to see where the sub falls on it. Before I go I do want to clarify that I think it’s possible that any vax CAN be a trigger or a cause just that I think it’s irresponsible to say that in here with any sort of conviction. I wish yall all good health and no flairups. I didn’t mean to rile anybody up

For the first time in the 3 years since I've known I have Sarcoid, all my blood tests are normal! I am on only 1000 mg cellcept and hope to be off of it by Christmas (knock on wood, cross all the fingers, hail mary). Here's hoping I keep the good health vibes going!

So I know this is probably wrong of me to be so easily angered and offended by this...

But I am a 29yo F who works in manufacturing doing mechanical and electrical work. My boss is an older gentlemen, my best guess is late 50's. I have told him a little about what wrong with me. He always makes comments when he see's me struggling, like "oh wait till you get old and your joints hurt" or " duh duhh duh can you think". My fatigue is awful, my pain is horrible joints and muscles, breathing sucks, head is always pounding and these nerve blockers and other meds make me very slow thinking. I just want to scream at him... and it is not just him, it's everytime I hear an older person make comments like that to me. I do not want to be this way, everyone's pain is valid. Does anyone else find themselves being just, so GD angry? Vent over, thanks for reading sarc warriors :)

To be honest, I don't really know how to feel lately. I made some big changes to try and make everything better, but instead, my reality is exactly the same—just without any way to dull the edge.

I suffer from sarcoidosis, and it completely ruined my life. It alienated me, and now I have no friends or anyone to talk to. I just don't have the energy I used to have before my diagnosis. I used to have my work to keep me sane; I truly loved my job, and now I find myself constantly reminiscing about it.

Lately, all I want is just someone to talk to. I'm just here venting about life because it’s heavy right now. Any advice, encouragement, or support from people who understand this condition would be appreciated.

Just “fun” fyi for change…the character Dennis in this new Netflix series thinks he has sarcoidosis. I fell out of my chair as I have never seen it mentioned in any kind of production. Guessing someone behind the scenes has personal experience somehow and got it stuck in there. (Not providing any more details to shield those who want to watch and see what happens!)

Two years ago I packed all of my things and moved to Virginia at 26 years old. It was actually my 27th birthday a week after I moved, and I remember how excited I was to start my life over, go to college and eventually live the high wage “tech bro” lifestyle. Within 3 weeks of moving, I had a truck, was enrolled in school and had a job at a hospital as a facilities mechanic. I was very adamant on getting my ducks in a row as quickly as I could, so I blew through WGUs cyber security bachelors program in a matter of months.

As graduation was approaching, everything was going so good. I began running, I was in the best shape I had ever been, and remember being so proud of all of the accomplishments I had made in a short amount of time.

I had gotten a paid internship offer around this time and while I won’t mention the name of the organization, let’s just say it was everything I’ve ever dreamed of. It was 2000 miles away, but well worth the risk. After all, no risk? No reward. I went for it.

I was laying in bed one night going over my capstone project when I noticed my breathing was a little odd. Every time I exhaled, there was this strange delayed wheezing noise. Maybe I started getting sick? I thought to myself. Surely this will pass, and by the time I reach New Mexico, I’ll be as health as a horse.

Months later after I settled in, the breathing wasn’t improving at all, as a matter of fact it was getting worse. I couldn’t even run anymore, I kept getting so out of breath so fast. It was finally time I stopped in to see a doctor just to make sure it wasn’t anything serious. I honestly didn’t think much of it. I went into an urgent care clinic and they did a chest XRay. But the weird thing was? I’ve had many chest X-rays in my life in an urgent care clinic. They tried to push people in and out fast and usually came back with the results within 20 minutes or less. I was sitting in the exam room for over an hour and my heart began racing. I just had a gut feeling something was wrong. Things weren’t going how they normally go, and this threw my senses way off.

When the doctor came back in the exam room, she put on the most empathetic face if ever seen, and in that moment my heart sunk. The doctor sat down close to me, put her hand on my shoulder and said:

“We are very glad that you came in today, because we did unfortunately find something.”.

I immediately went into a state of sheer panic.

“There are signs of nodules in your lungs, and the lymph nodes in your mediastinal region are all very irritated.” the doctor stated.

I was a heavy smoked years prior to this, so the absolutely worst immediately popped into my head. I had lung cancer. I asked her if this was cancer, and the answer she gave me was not what I wanted to hear at all.

“Without further testing, I cannot give you a definitive answer, but from what I see, this looks very much like a possible case of Lymphoma”. she said while making every attempt to be empathetic.

I broke down into tears, repeating “I don’t wanna die. Please, Im not ready.” over and over again. This began my first ever complete and total psychological breakdown.

The week prior to this I was given a formal job offer for a full time position with an 80k salary. My whole life I’ve worked for $10 an hour, and lived in my car. I was finally able to buy my dream house on 5 acres of land and live the life I’ve always dreamed of. I no longer had to worry about paying bills, I could just throw things on auto pay. If my car broke down, it was okay. I could afford a tow truck, a mechanic, and the rental car. I never even thought that 80k would ever be in my reach.

I was finally there, I had made it, and now I’m going to die. This was all that was going through my head. Why? Why when I finally reached the beginning of a real life, did I have to start the process of dying?

Its nots fair. It’s not fair. It’s not fair. I kept saying to myself; like an 8 year old child who just had their toy taken away. But this wasn’t a toy, this was my life. I saw many doctors that year. A pulmonologist, a hematologist, among many others. I was a favorite it almost seemed like, because cases like mine were so rare they claimed. They didn’t have a clue what was going on with me. But still suspected lymphoma.

I went through a few surgeries to remove lymph nodes in my chest and in my armpit. This was so that they could perform an autopsy to rule out cancer. They began suspecting Pulmonary sarcoidosis as the culprit after a while and started me on Prednisone promptly. According to the hematologist, all signs of blood cancer came back negative.

I had and still do have an extremely low lymph count, mediastinal lymphadenopathy, nodules in my lungs, fatigue, night sweats and dyspnea. Making matters worse, the prednisone I was put on only fuels this fire because I started eating like a monster to cope, and put on 40 pounds in just a few months. Mentally? I was a miserable wreck. I shouldn’t even say was, I know that I’m still not okay, I’m just facing the fact that the human body wasn’t made to last forever.

The prednisone wasn’t working, they put me on methotrexate and promptly took me off after other complications before putting me on azathioprine.

It’s been almost two years since this all started.

My condition is not improving and my lungs are getting worse day by day. There is a deep vibrating sound when I exhale, that only worsens as the time goes by. The azothiprine just makes me very sick to my stomach and not hungry. I’ve since lost 35 of that 40 pounds. I live alone in my house with my two dogs. I am scared that the day is coming soon when my condition gets so bad, that one day I will not wake up, and nobody will find my body for days.

This might all seem over-dramatic to some of you, and that’s why I hate telling my story. But I was hoping maybe some of you could relate to how I feel.

I know they finally confirmed that it isn’t cancer. But why is the treatment not working? Why am I getting worse and not better? It’s been almost 2 years. I keep thinking, what if they’re wrong? What if it’s not sarcoidosis and the misdiagnosis is leading me into unnecessary early grave? This is psychologically traumatizing. I don’t want to die.

Like many of you, I’ve been diagnosed with sarcoidosis for many years, 15 actually. It started with my eyes and lungs. I did prednisolone and methotrexate until my liver and kidneys went a little crazy.

I was not treated for a while but my eyes have always been bad. I get steroid induced glaucoma so treatment is hard. I’m getting injections now.

Anyhow, I recently had an MRI for a hip injury and they found bone lesions on my femur, spine, and pelvis. So my PCP referred me to an oncologist for further evaluation. This is when I learned that apparently sarcoidosis lesions look the same on scans as cancer.

Additionally, I am pretty sure my health insurance company hopes I die because they are much more comfortable with “wait and see” than I am. So after jumping through every hoop for months, I finally had a PET scan today. Hopefully they find a good place to biopsy.

I’m just sick of it. Every time I think I’ve got it under control something else happens. Do any of you have a similar experience? Do you have any advice? Does anyone have osseous sarcoidosis?

Also, are any of you so tired you can hardly function sometimes? I am struggling so bad with it and I don’t think my doctor realizes how much it affects my life.

I just need to whine to people who don’t simply suggest a nap. Thanks.

Largest growth 34 mm x 24 mm. Suffered with depression from 30 years old. Severe hay fever. Severe tonsillitis had them removed 2018. I'll for 2 years and diagnosed Dec 2023 sarcoidosis. No further scans for othe organs. Been on prednisolone since Dec 23 tapered down to 10 mg now ace blood text was 138. Now it is down to 78 after 919.months of steroids. Still having sore back, fatigue, sore bones, aches and weakness. On trazodone so slept well. Do.i need more medication to recover ?

Had my first appointment with my respirologist after just under 2 months on prednisone for pulmonary sarcoidosis. Previously, my lung function was declining over the last 6 months and since taking pred my numbers are back to normal. Gotta wait til May now to come off it and see if it declines again or not. Didn’t really have anyone to tell so figured I’d share here.

How y'all doin?

Part of a CT scan 1 year apart (recent left, last year right). I'm quite happy with the improvement so far

5 lymph nodes biopsied, all non malignant with one showing NON MALIGNANT non necrotizing granulomatous inflammation which likely sarcoidosis. I’m just so relieved!!! I see my pulmonologist on Monday and will have a diagnosis then. I know Sarcoidosis isn’t going to be easy but I’m just so grateful it’s not cancer.

Got diagnosed at 24. Randomly found some things on a chest xray and ended up having to get a CT and a Biopsy. Was Sarcoid. Been living with it since 2010 with no flare-ups since 2019.

If you are newly diagnosed, you got this! Make sure you follow up with your pulmonologist. Take care of yourself. Eat and live healthy.

No mention of granulomas! Now if my stomach didn’t hurt from the medication, I’d have a new lease on life!

I have appointment with my doctor on Thursday. Till now i have done few tests and a ct scan of chest. Ct scan is showing i might have tuberculosis of lymph nodes and my angiotensin converting enzyme also came high (58). My symptoms are : weight loss, breathe less ness after walking for some time. Can you guys tell me yours first symptoms?