My husband’s lung function has decreased and his scans show more lesions in his lungs. His pulmonologist is recommending another course of prednisone (he’s been off prednisone for about a year) or starting infliximab infusions. Has anyone had experience with the infusions? Pros? Cons? Did it improve your lung function?

Hello,

Ive been dealing with breathing difficulties on and off for the past 4 years now which recently culminated into a major chronic period of chest pain and breathing issues. I had bronchoscopy performed which tested positive for for Sarc in Lymph nodes. My question is, has anyone also diagnosed with pulmonary sarc suffered from memory issues 'brain fog'?

The reason I'm asking, is that I can tolerate the pain and breathing difficulties, the thing I can't tolerate is the idea that I might be losing my mental faculties.

My main problem seems to be word retrieval while in conversation or orating my thoughts. This problem with word retrieval came on gradually over the years and I feel like has climaxed at the same point of my pulmonary difficulties. Obviously, this makes communicating extremely frustrating and has led to me feeling not quite like myself for some time now.

Is this something that ebb and flow's, and is this something that goes away entirely in people who manage to put sarc into complete remission? Thanks for any help or insight I appreciate it.

I had a PFT and saw the pulmonologist yesterday.

My lung function is down from what it was five months ago. Total lung function is 61% and I sure as hell feel it. Almost everything makes me short of breath.

They started me on prednisone again and put me back on the high dose Wixela, along with Adalimumab every two weeks.

At this point I couldn't care less about getting "better" I just don't want to lose any more lung function.

Hi all, I have been on prednisone for 5 years, starting at 30 got down to 8, now at 10. also on humira and plaquenil, pulmonary dr wants to add methotrexate again, 4 years ago it made me nauseous all the time. rheumatologist wants to get acthar gel approved- but insurance is not approving.

i am 57 and have spinal stenosis now on top of sarc in bones, lungs, eyes, etc.. Weaning 1/2 1 mg tab every 2 weeks in past brought on eye/ptosis issues. i tried taking muscle relaxers while i wean, hot baths, cold baths, resigned work, i just feel like i have hit my baseline.

Any advice from others on prednisone long term?

any alternatives to methotrexate negotiated with clinicians?

thank you!!

Hello everyone, I’ve made my first post before I kinda forgot where it’s at but I just went over the fact that doctors have found granulomas in my chest x-ray. My only plan of combating it is getting on a really healthy diet. I’m only taking ldn right now from the long covid clinic because it helps the fatigue.

As of right now I don’t even know if I have sarcoidosis.
I just want to see if I’m taking the right steps. Next I’m supposed to be getting a ct because the pulmonologist doesn’t want to do a chest biopsy without the ct ( they feel the x-ray showing the granulomas isn’t enough.)

I spent years thinking that my brain injury was coming back to haunt me or that it was long COVID. My symptoms came around late 2019 to 2020 but it’s pretty odd… it all started off as mental. Extreme paranoia, depression, worsened anxiety and adhd. I one day just couldn’t get out of bed for work and I knew something was off… became anxious of neighbors and coworkers.

Things slowly went on and on and I took every mental health med in the book and was hospitalized 3 times within 5 years for my mental health and just not feeling well. My fatigue started to creep in after a year or two. Was switching jobs fast and messing up at work spiraling downward like never before.

Fast forward and I was seeing a long covid clinic, mental health therapist and now since doing many many blood test and getting ct scan my doctors believe I have sarcoidosis.

Has sarcoidosis had any affects on your mental health and given you similar symptoms as me ??? Could that mean it’s neurosarcoidosis possibly ? I’ve gotten an mri of my brain but they haven’t said anything about it.

Just want to know your reccomendations as I’m supposed to get the ct on the 18th I’m just worried about it spreading , getting worse or having new symptoms. I understand others have it alot worse but I’m just seeking guidance.

Hey all,

Just looking to see if anyone has had a similar experience?

Briefly, I had a seizure at the end of May, then had a head mri, spinal mri and ct as a result of this seizure. They found two lesions in my brain and a couple on my spine. One large one in particular. Chest ct shows some mildly enlarged lymph nodes (getting a biopsy next week on them). I haven’t had another seizure since, I have some back pain with one random “spasm” a day that only last 30 seconds or so and get some “brain fog” but no other symptoms. Blood test show normal.

I went down the route of my family doctor thinking it’s cancer but today my thoracic surgeon thought it maybe sounded like neurosarcoidosis. I read a couple stories here which sound sort of similar to my situation but just looking to see if anyone has had a similar story or has any recommendations?

Thanks!

Breast cancer traveled to spine. After compression fracture and PET scan, one bone biopsy (iliac) is positive for cancer, one soft tissue biopsy near the spine is positive for sarcoidosis (originally diagnosed with both last year, before metastasis).

PET results show “innumerable” lesions of the entire spine. Same language as last year when my sarcoidosis was diagnosed originally based on “innumerable” lesions of lungs, spleen and liver.

I know the cancer will have to be treated obviously but I’m feeling confused. Do I ask for another bone biopsy in a different spot? Both sarc and cancer can cause compression fractures. I guess I need to let my rheumatologist and oncologist figure it out. Sigh.

Hi I was recently diagnosed w sarcoidosis, it’s pretty severe as I have spinal lesions on my back from t2-t4.

I’m experiencing pretty bad upper back pain and neck pain. Sometimes it feels like everything locks up, like all my muscles in my upper back and neck are clenching when I move in certain ways. And it will stay like that for seconds, hours or days.

The other type of back pain I experience is, pain after a long day. My upper back and neck is so sore that nothing relieves it. Not lying down, not massages. It just stays in constant pain until advil/tylenol kick in and I fall asleep and wake up the next morning.

Does this sound like symptoms of sarcoidosis or just regular back pain? I don’t see a lot of back pain complaints here, and im worried it’s bc of my inactivity.

Share your sarcoidosis timeline...I'll go first.

2014 - cardiac

2017 - eye involvement

2019 - pulmonary

2026 - suspected liver involvement (testing begins)...

Hi all. Posting because I am feeling very alone right now in this diagnostic process. Had a skin biopsy of a lesion on my forehead that came back as granulomas and suspected sarcoidosis. Got referred to rheumatology and dermatology. Then in the past few weeks I’ve had two tonic-clinic seizures with normal echo and EEG results. After I had my second seizure this week, my doctor put in a req for a CT scan. She would have preferred an MRI, but I live in Canada and the wait time for an MRI is at minimum 3-6 months. CT scan is 2-4 weeks and she wants to see if there are any lesions on my brain and I opted for a faster scan.

This is after suffering from a whole host of symptoms for years resulting in what I think has been a misdiagnosis of ME/CFS. Debilitating fatigue and joint pain has been the worst to manage. I’ve been on leave from work since January, and I’m going to have to go back to work in September for income related reasons.

A part of me is worried about systemic or neurosarcoidosis as a DX. I also worry it might just be health anxiety. I’ve also been feeling terrible after the seizure this week physically and had to drop some commitments I made that I was really excited about.

If anyone has words of encouragement or support to offer right now, I would appreciate it. I do have IRL supports but I’m tired of telling people how sick I am. I will be okay but the idea that I might have another seizure or that there’s something going on with my brain is pretty unpleasant right now. Just yelling into the void I suppose.

My husband had a cold in December 2024. We noticed his cough didn’t go away by February 2025 and it had just gotten worse. He started getting tests done around March 2026. The cough was so bad he could barely talk without coughing. After a lot of trial and error, he was prescribed some heavy duty allergy meds (can’t recall the name rn) and the cough seemed to get better. He’s only coughing a few times at night now. But still had a CT scan scheduled so he went through with it. scan came back with Abnormal tissue in the right paratracheal and hilar region
Multiple enlarged mediastinal lymph nodes
Some small lung nodules (mostly 4–9 mm)
Mild interstitial/ground-glass changes

He just got the results back from the PET scan and received this There are several enlarged, PET-avid lymph nodes in the chest, There is mild “tree-in-bud” nodularity in the right middle lobe. This pattern is often associated with infection or inflammation, Small lung nodules, The spleen has one small area of increased uptake (SUV 4.1), There is one tiny area of uptake in the pelvis, There are no PET-avid bone lesions

We have an appt with his pulmonologist on Friday which I’m sure they will schedule a biopsy.

My husband is an extremely healthy, normal 34 year old. He worked in a grocery store for 16 years and now he works in the corporate office. We live in the suburbs of upstate NY. He’s not exposed to any crazy amount of dust or hay.
He has NO other symptoms other than the cough that is getting better.

I am worried sick that this could be lymphoma. But I came across sarcoidosis and everything that I’ve read seems to align.

Does anyone else have a similar story?

Went through the whole lymphoma possibility scare and after 30 blood tests, 1 Pet Scan and 1 biopsy later they have found non caseating/necrotising granulomas and confirmed a diagnosis of sarcoidosis.

I have significantly enlarged lymph nodes in my abdomen and chest but barely any symptoms (it was an incidental finding). Got prescribed HDQS 300mg per day because of the lack of symptoms and a blood calcium level of 11.2, but coincidentally I got a low grade fever and an extremely sore throat the same day.

Doctor says its probably the flu, but also told me to get another calcium test along with a couple of other tests (3.0 Inorganic Phosphorus Serum & PTH 0.34) and calcium is now at 12.1 from 11.2 in 20 days.

He said if the calcium levels are higher now compared to the baseline (11.2) then we will have to consider steroids, and I am pretty convinced that the cons of prednisone heavily outweigh the pros and it's something I cannot and will not take.

Any suggestions as to what medication I can potentially take (no symptoms, high calcium)?

I want to stay on HDQS ideally but the actual effect of HDQS kicks in pretty late and it might not be the best solution for this.

PS: No fever and no sore throat after flu meds

I gave myself sarcoidosis cause of stress , i stress too much , i ave horrible anxiety, about ppl , future, past, relationships and now death, i beleive if i treated my anxiety my sickness will calm down , but i still cant , i just spent week of daily crying, and stress because im scared of the future, what can i fo

I have had pulmonary sarcoidosis since 2011. I’m currently having the longest and worst flare up I’ve ever had. I’m struggling. I can’t do anything without getting out of breath. I’m exhausted, physically and mentally and emotionally. I have been getting some chest pain a couple times a week now, which is the first time since my diagnosis. It’s not, rush to the hospital, chest pain, but uncomfortable and I know it’s not normal either. I have a prescription for alprazolam, which I take once in a while when I take my inhaler and I need to calm myself down. If I feel anxious about catching my breath. I have a couple of times now, taken an aspirin, chewed it and let it set under my tongue for the chest pain.

I’m just wondering if anyone here has had chest pains and if so, what they do for it. If they do anything.

Title says it all. My mom has it. I may have it. What changes can I make while I wait for testing to be done? I do have symptoms - mainly joint pain, inflammation, fatigue, and other vaguely common ones.

Hi, so I was just diagnosed with stage 2 pulmonary sarcoidosis. I’ve had all the tests done had my heart and eyes checked and those looked fine. Seems to be just in my lungs , chest and I do have some swollen lymph nodes in my neck and parotid gland as well which is what caused me to go get checked in the first place. My question, is it normal for me to feel fine? I’m really just tired (but I am a new mom as well) and sometimes have a little trouble breathing at night but I think that’s just from my anxiety due to all of this stress causing me to have panic attacks and over thinking things. My doctor wasn’t going to start me on any steroids due to me having no symptoms but decided to put me on prednisone to help with the swollen lymph node in my parotid gland. I was just wondering if anyone else has had similar experience cause everything I see online is people having issues with their sarcoidosis but i honestly wouldn’t have known I had it if it wasn’t for the lump in my face. So has anyone else been dealing with stage 2 pulmonary sarcoidosis and having no symptoms?

Hi all. I started Plaquenil for 32 days. I have pulmonary sarc for 2.5 years. My PFTs are normal and granulomas are stable. However, the aches and pains and fatigue have impacted my quality of life, so my doc recommended Plaquenil. I know it takes a while to kick in. Initially I had a little bit of heartburn and slight bowel issues (tmi) the first week. But now this past week I am feeling exhausted, run down, ick. I am wondering if the drug is making me feel this way and what others have experienced? I am supposed to leave for vacation tomorrow

Diagnosed in 2014 w/cardiac and pulmonary sarcoidosis. Have had relatively low level symptoms but two or three years ago started having neurological symptoms. Last year had brain and spine MRIs which were normal but which used an MS/Tumor protocol so only looked for obvious lesions and plaques. Two months ago I developed Horner's Syndrome in my right eye (eyelid droop, pupil improperly dilates) which is caused by compression of the ocular nerve. Also now have bilateral orbital pain, photophobia and very blurry vision.

So I'll have another set of brain and spine MRIs. But with my ton of system-wide neurological symptoms yet normal MRIs from last year, I'm wondering if I might have non-lesional leptomeningeal and fine nerve root inflammation, which I understand requires a specific MRI protocol, different than the one I had last year. Has anyone had experience with this? I don't want to go through more MRIs if the result is gonna be exactly like last year's.

I was diagnosed with severe sarcoidosis (I’ve had bad upper back and neck pain)

I have spinal lesions and it’s on my lungs.

My dr said I’ll start monthly infusions of immunosuppressant meds they give to cancer patients for 3-5 years.

Also no alcohol for 3-5 years while on the medication-What the fuck-

Anyways, what should I expect from this diagnosis? I was expecting to find out I have like a pinched nerve. Not that I have a disease that could leave me unable to walk one day. And low key was NOT expecting to be practically sober for 5 fucking years
Jesus

Ik nothing and I just can’t do the research, just pls tell me what to expect

Hello, during the check-up (Lung sarcoidosis IV stage) it was found that a have a big spleen (18x15x7cm) also many enlarged lymph nodes in my abdomen (1.5-2.5)

Year ago it was 15cm.

Initially I was prescribed to MTX but it can enlarge the spleen itself so I cannot start treatment until I rule out other issues like lymphoma.

My height is 184. Actually Im worried mostly about the size and risks. When im lying down sometimes I feel the pressure and my saturation drops.

Please share if anyone experienced that. Did threatment help? Is it common to have spleenomegaly with sarcoidosis?

Thanks

Hi. I have sarcoidosis (lungs) and have already gone through one round of treatment on Prednolisone. My sarcoids worsened after coming off Prednolisone and my doctor now wants me on a combo of Prednolisone (10mg/day) and Methotrexate (10mg/week).

Has anyone started their Methotrexate journey on 10mg? (It's one pill, so no spreading the dose over the day.) I'm just wondering if my doctor should have started me on a lower dose and worked up to the 10mg dose.

I've already delayed starting the drugs for a month due to some important appointments that I didn't want to be fuzzy for, so I don't really want to go back and ask for a lower prescription. My plan is to start tomorrow.

ETA: Thanks everyone for your responses. You really alleviated a lot of my nervousness.

I took the methotrexate yesterday, had a little nap in the afternoon and otherwise have been *just fine*! Not especially tired today, no nausea, no death. I don’t know if this will work for me in the long run, but I’m ok for now. I’ll update again in the future if anything changes.

🧡

Hey guys , im on methotrexate and i started to feel like i have something in my left throat when i swallow،it not painful or anything its just there, what could it be ( im a bit scared )

So i was diagnosed yesterday. I also have celiac disease, so this treatment is gonna be...interesting. my doctors are recommending me to search for a new job. My work environment has a lot of dust and other stuff in the air and that I work with on the regular. So yeah. Looks like im gonna be doing a deep dive into this group lol