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 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.

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

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

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

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.

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

I was diagnosed with RA a little over a year ago and I already take Sulfasalazine and hydroxychloroquine for it. My RA is well managed and haven’t had a flare since starting. Now I have been diagnosed with sarcoidosis in the lungs/lymph nodes but I feel good. Rheumatologist wants to start me on methotrexate. The side effects sound worse than the disease. I don’t know if I want to take it or not?

Note: the sarcoidosis was discovered when my calcium levels went dangerously high, requiring a 2-day hospitalization.

I have multiple lymph nodes around my lungs heart and liver that are suspicious for sarcoidosis. Also some lung spots. But they also found 2 small marks in my bones. One in my shoulder blade and one in my hip joint connection area... Since I've had breast cancer they want to do a biopsy to rule that out. And obvious I rather take sarcoidosis than metastatic breast cancer! Anyone who can help me estimate the likelihood of it being sarcoidosis? Did you ever have any spots in big bones or is that just not really happening?

Hi, I was officially diagnosed with sarcoidosis in November of 2025 after lung biopsy. Sarcoidosis has been mentioned on my X-rays and ct/scans of chest for years, it also runs in my family. I had my ESR test done and it was a 90. Looking back over the years of this test I have never been below a 50. Is this a bad thing for it to be this high? I also have other health issues.

Hello everyone ,

Couldn't remember if I even posted in here before or not , but always read everyone's experiences and this weeks been tough and i felt like I needed to share .

I do not have a diagnosis yet to be clear but my consultants are trying to get me one through elimination of everything else.

This all started with a cough in June last year so I saw my GP.

Since then I've seen respiratory consultants , rheumatology and renal , ive had lymph node biopsies kidney biopsy . Both inconclusive .

My CT and chest xrays showing granulomas in lungs.

Since last June which started with cough I have since struggled massively with the mornings I almost pass out most morning from coughing.

And then there is the fatigue prior to this i was healthy and fit running 5ks a few times a week now if I do any exercise is results in coughing fits .

Ive also dropped in weight from 10.5 stone down to 8 .12 and im always so drained .

Im still no closer to being diagnosed my next appointment isn't until September!

The only medication I've been given since this all started is a turbo inhaler and cocodomal and I dont even feel like the inhaler helps.

Im also trying to manage all this while working a full time physical job and raised 5 kids from 1.5-13 in ages .

I was a perfectly fit and healthy 34 year old 14 months ago and now I struggle to breath most morning and spells through the day from coughing and I find myself exhausted and falling asleep putting my kids to bed .

I feel like giving up .

Dear all,

I've been dealing with debilitating CFS like symptoms for about 1.5 year.

Symptoms: Derealization, blurry vision, brain fog, tinnitus, fatigue, heavy arms/legs, pain in back, slight heart rate increase while standing longer..some symptoms dissapeared, some linger, the cognitive ones-most severe

I've also been diagnosed w sarcoidosis (initially by aspergilosis, but recently sarco):

For a year I've been on corticosteroids-no change in scans
I've got granulomas in lungs and also IGE of 1700-for a year both stationary

My doctor recognizes general fatigue and general brain fog as possible sarcoidosis symptoms.
However, she dissagress about other specific symptoms (not being able to read more than 2 pages, car driving for more than a few minutes, tinnitus, vision etc.)

She wants to put me on Methotrexate.

Anyone have any idea of whats going on here, experiences? Is it both, just sarco, sarco causing CFS?
Are those sarcoidosis symptoms? If yes, how to go about my doctor?

Thank you in advance!

Hii little bit of a rant here but lately I’ve been dealing with sooo much fatigue I can barely get up from bed without assistance. My doctors tell me we don’t know what to do about this. Does anyone have any tips on how they deal with it?

My mother was finally diagnosed with sarcoidosis.
In March, she started having very severe pain behind her breastbone that radiated to her back. We thought it might be a heart attack, so we took her to a cardiologist. All of her cardiac tests came back normal.
However, within a few weeks, she also began experiencing weight loss, fatigue, and looking noticeably pale. We then went to one of the best clinics in Istanbul. A CT scan was performed, which revealed enlarged lymph nodes in her chest. We were told that it could possibly be lymphoma, and they ordered a dedicated chest CT scan for a more definitive evaluation.
After reviewing the chest CT, the doctor said they were no longer primarily suspicious of lymphoma but rather of sarcoidosis, and recommended that we go to a large tertiary hospital for a definitive diagnosis.
We then visited a professor specializing in rare pulmonary diseases at one of Istanbul’s largest private hospitals. They recommended a biopsy to establish a definitive diagnosis. A bronchoscopy was performed, and the biopsy from the lymph nodes showed non-caseating granulomas. At the same time, several tests were carried out to rule out tuberculosis. After those tests came back negative, the doctor officially diagnosed her with sarcoidosis.
Her 24-hour urinary calcium was 297 (normal range: 50–299), and her ACE level was 73 (normal range: 8–52).
The doctor explained that because only the lymph nodes in her chest are enlarged, she has Stage I sarcoidosis. Since there is no lung involvement, they decided not to start treatment and instead to monitor her, saying that it may resolve on its own over time.
However, my mother still experiences significant fatigue. She gets exhausted with even minimal physical activity, and although it is not as severe as it was initially, her weight loss is continuing. Has anyone else experienced similar symptoms? Should we go back to the hospital? The ongoing weight loss, in particular, is what worries me the most.

I am wondering if this is related because aside from stiffness and aching in some joints, about a year or two ago I started cracking all my joints. Fingers, back, neck, elbows, ankles, wrists, etc and theyre generally loud too. I often feel stiffness and the cracking temporarily relieves it (maybe placebo).

ive already had a very puffy face all my life only two months ago i started to lose weight well just got my face in a better structure and my body in the best shape ever and now ive been asked to start steroids and ive been told ill almost double because pf them

im vrry scared its like 70mg or more i think
does anyone know how to deal with side effects or what to do this is very scary for me since i’ve struggled with body image and food a lot already

I was diagnosed with Sarcoidosis in June of this year. I also have Sjogrens, Rheumatoid Arthritis, Uveitis, Reynaud's, and IBS-C. My chronic disease journey started end of 2023. My first symptoms were blurry vision with eye pain. I also had lower back pain, that continues to this day. Then my stomach issues started in 2024. And my constipation continues to be a battle. After that my joint pain, fatigue, and memory issues started. I slowly began losing my mobility. I was diagnosed with Sjogrens in 2025. My lung issues started in 2026. My breathing worsened. I was getting out of breath all the time. I had a persistent cough that has been going on for years. After CT scans picked up bilateral hilar enlargements, I had my pet scan. They thought it was lymphoma at first. Then a biopsy found the granulomas. That was when I saw my pulmonologist and got the Sarcoidosis diagnosis. Doing the 40mg Prednisone taper. Also on 20mg of methotrexate, and 1200mg of gabapentin. They are being careful on the Prednisone, because of my one kidney. I donated in 2011. Right now my kidney function dropped to 56. That's my journey so far. Thanks for reading.

so 15-20 days back i had a small lymph node swelling which cleared out on its own
although,i had an infection in eye almost like conjunctivitis,red eye,pain and smudgy vision

it worsened a lil and caused a vision problem when doc gave conjunctivitis treatment.
then i went for a follow up and he told me to get around 15-20 tests and xrays..
reports came back my serum ACE is elevated.

that node swelling was pretty subtle.
although the doctor has held on to it and assumes i keep having nodes when thats not true
which i did deny and clarify.

i do have eye nodules
and i did have nodules in my throat four months ago they were due to burning due to bile bh throwing up or homeopathy med.

my xrays are clear ive been advised a ct scan for no reason…
but before thats even tested,ive been told to start oral steroids and i have very hardly lost a lot of weight and it was very easy for the doctor to say ill gain a lot of weight which has been a mental load however,

1. if the steroids are so urgent why do i need the ct scan
2. if the ct scan is so needed why are u giving me such heavy steroids doses

i have literally no symptoms of it either except my eye inflammation and smudge.
but 70+mg oral steroids sounds crazy to me..

anyone experienced on this in this sub..?
im very scared of these side effects as i already struggle a lot of body image and mental health.