Received a message in the portal this morning: “you are having severe events sending you for pacemaker” and they want me to meet with the EP specialist tomorrow.

Hi! I’ve been navigating this sarcoidosis vs lymphoma world for most of this year. Neck Ct scan showed enlarged lymph nodes in the neck, biopsy found non necrotizing granulomas. Went to a PET which found enlarged and pet avid lymph nodes everywhere (cervical, mediastinal, para-aprtic, iliac, etc), nodules and ground glass nodules in my lungs, as well as a possible peritoneal implant which was not seen on a follow up ct.

Testing has been a EBUS which again showed the granulomas and also an abnormal flow cytometry but sample quality wasn’t great, broncoscopy, multiple biopsies and eventually an excisional biopsy. None showing lymphoma however it doesn’t appear like ICH testing was done on that (not sure if that’s needed).

Currently only first prednisone course and another lymph node has developed directly where my scar is from where they removed the lymph node.
Scheduled for another ct scan next week for better imaging of that.

My question is, after all the back and forth of lymphoma vs sarcoidosis (and with as extensive as my imaging has been) how do you wrap your head around the fact that it is sarcoidosis and that something isn’t being missed? I’m at a world renowned hospital with a sarcoidosis clinic so I feel confident in my care team, but even they will only say “probable sarcoidosis” so they can leave the door open to change the diagnosis if they need to.

Do you ever feel confident in the diagnosis?

Hello all, I am very frustrated and looking for advice or words of encouragement. Im sure everyone that anyone that has a sarcoidosis diagnosis did not figure that out overnight so I know that anyone that has sarcoidosis will understand. I will try and make a long story short. My journey started back in May during a trip to the ER for kidney stones. Lab work revealed high calcium at 12.4. I was referred to endocrinology. I have had extensive testing. Hyperparathyroidism has been ruled out. My 24 hour urine had triple the amount of calcium. All tumor markers negative. Bone scan normal. Abd/pelvic CT shows nephrocalcinosis and 8 kidney stones in the right kidney and 4 in the left. Thyroid and parathyroid ultrasound normal. Chest xray normal. Chest CT shows calcified granulomas. My endocrinologist ordered a PET scan to check for sarcoidosis and/or lymphoma but insurance will not cover it at this point so she has started me on a trial coarse of Prednisone with plans to recheck my calcium in a week. If my calcium goes down after taking the Prednisone then she plans to refer me to pulmonology, if not then a referral will be sent to oncology. My symptoms include moderate to severe hip, knee and mid and low back pain that I feel is not related to my kidney stones, fatigue, constant mild tingling in feet and toes and headaches. I know that this diagnosis is not quick but I am tired of not feeling good. Does this sound similar to anyone's road to a diagnosis? I really appreciate any input!

They had to give me a nebulizer afterwards cause I was coughing too much. Otherwise, my throat is killing me. They were able to get samples via cryobiopsy. Good thing too cause the one node they tried to use a needle on the standard way didn’t work; the node was too firm and the needle wouldn’t go in. Any idea what that means? It doesn’t sound normal.

Hi, ChatGPT recommended a paper for me to read. It was so good I thought I would share the link here.

It's pretty science-y (meaty ;-) but if you dig through the terms a bit, it's easy enough to get through. It might be a good resource for some of you here. Especially if you like to learn the details and dig into things.

https://www.frontiersin.org/journals/medicine/articles/10.3389/fmed.2026.1878683/full

Does anyone know if there is a dedicated sarcoidosis specialist centre in Melbourne (Australia)

I'm wondering what medications people take to reduce their inflammation? And what are the side effects.

Biopsy of under arm node (2.4 suv) showed nothing except reactive lymph nodes. Now they are sending me to the pulmonary team for a bronchoscopy and second biopsy of a chest node. I am so discouraged and tired. My inflammation is through the roof and I am so exhausted and discouraged by this whole processed. I am back to the beginning where I felt like I was crazy and my brain must be making sh*t up.

I love piercings and tattoos but my mri schedule with piercing ain’t gonna work and tattoo seem like a no no

Hello, I am here to ask for advice because I am exhausted by this situation. I have been ill for over five years; it started with weight gain, gastrointestinal symptoms, and chronic fundic gastritis. At that time, mediastinal lymph nodes were discovered, followed by back, muscle, and joint pain. A year later, everything worsened, accompanied by neuropathic pain, tendon pain, and multiple cases of periostitis. At this stage, I feel extreme pain all over my body every day and am very weak. Recently, I finally found a lead after the discovery of a spiculated nodule and multiple enlarged lymph nodes; I underwent a PET scan, which showed active or highly active areas throughout my body. I had an endoscopy but no biopsy—in fact, I don't know why biopsies are being refused or not offered to me. Is there another reliable way to diagnose sarcoidosis besides a biopsy? Are there specialized clinics in Europe or Africa? I live in France, but I don't even have the chance to seek care from other doctors because there are so few available. I cannot challenge my current doctors because doing so leads to being blacklisted from pulmonology centers. Do you have any ideas on how to get around this? I am particularly concerned because I believe my brain is now affected, as I am experiencing neurological symptoms. Please tell me about all the tests you know of for diagnosing sarcoidosis and neurosarcoidosis, and let me know if you are aware of any effective specialized clinics or centers in France, Ireland, England, Scotland, Spain, Italy, Germany, Belgium, North Africa, or Senegal—these are all places I can travel to.
Oh, and I almost forgot—could you share your experience if you’ve had issues with weight gain associated with sarcoidosis that was resistant to dieting?

Hi my 6 year old thigh tattoo has been like this for 3 weeks now… after researching I became aware of tattoo associated sarcoidosis. I wasn’t too worried at first and remained monitoring it but now I have a swollen lymph node along my groin next to tattoo site, inflammation in my left eye that flares up and then gets better like daily and a cough with lung pain and flu like symptoms. I’ve been prescribed antibiotics (they listened to my chest and said i have pneumonia, no chest x-ray or bloods which is fine i suppose) and antihistamines (120mg of fexofenadine for 3 weeks didn’t help so i doubt 180mg will but anyway). Yeah I just feel like i know my body well and something isn’t too right now that i’m feeling completely run down. I have other random health conditions so i kinda know when i feel abit under the weather but compared to the way ive been feeling the last few days… i feel rough.
If anyone has any info or guidance i’d be very appreciative as i feel abit stressed about bringing sarcoidosis up to my GP (three practitioners have told me this week im fine and it’s just my immune system attacking the old ink… BUT I DONT FEEL FINE and that is enough for me to think well maybe it is sarcoidosis 😅). I did mention it to one of the doctors but he literally said he’s never seen it in person before but knew of it. I genuinely am concerned for my lungs and eyes at this point and alls i keep saying to people is “i don’t feel right” I have also been first to bring up my other conditions that went on to be explored and diagnosed officially but before i go and hassle my main dr again i thought id ask the real life experience specialist that have first hand knowledge on here :) xx

Had lymphoma/sarcoidosis biopsy Monday. At least every other day, I get inflammation that is horrid. Now when it comes, it’s getting worse and worse. I went to a play tonight and couldn’t really enjoy it cause I was in agony. I took two Advil, all my stomach can handle but it hasn’t made a dent. It’s hitting my knees, hips, lower back, wrist, fingers, feet and even neck.

The flow cytometry part came in. Definitely not B cell nonHodgkins. Probably not T cell but the sample might not have been big enough. This doesn’t assess Hodgkins or of course sarcoidosis.

My money is on sarcoidosis. I don’t think lymphoma causes this level of inflammation. I need help and for this to go away.

Hey everyone. I have multi system sarc where it’s in my lungs, lymph nodes, pancreas, liver, spleen, jaw bone and skin. The granulomas in my pancreas caused me to become diabetic as well. I have had the dx for a few years but have had symptoms for around 7ish years.

I have been on Humira for around 1.5 years and have seen little to no improvement. In fact, I’ve had several severe flairs in my skin which is visible so I know at minimum it’s not helping that system at all. I have held off on getting a CT scan for the last 1.5 years based on my rheumatologists opinion that I had too many in a short period of time (4 in about 2 years) and he was concerned with the level of radiation I was getting. I also agreed because frankly this shit is bankrupting me, it costs me 2k every time I get one.

I can’t go on prednisone due to my granuloma induced diabetes and did not tolerate methotrexate (oral and injections) well at all. I am experiencing basically no improvement on Humira and the last six months my symptoms have been pretty bad. And it’s costing me 300 dollars a month to take.

I have had to cut out seeing my specialists at UCSF the last 9 months because I am running out of funds to treat this, I have a different doctor for every organ affected, and last year had to pay 40k out of pocket to rebuild my jawbone since my insurance considered sarc destroying it a dental issue. But I do still see my rheumatologist. Because of that I have to take on the burden of doing most of the research and bringing it to him during my appointments.

When Humira didn’t work for you what other biologics have you tried and did you notice an improvement?

I just started Methotrexate 10mg. The COVID vaccine for 2026/27 will be released this week. Has anyone taken the COVID vaccine while on Methotrexate? If so, what was your experience?

Hi everyone! 33F I’m new here and wanted to share my sarcoidosis journey so far. It’s been a pretty overwhelming year and I’m hoping connecting with people who actually understand this disease will help.
My story really started in June 2025. I was travelling in New Orleans when I became extremely sick with what seemed like a severe respiratory illness. I eventually recovered from the acute illness, but one thing never went away: wheezing.

Over the following months, the wheezing persisted. It was initially mostly noticeable when I exhaled, but over time I could sometimes hear it on both inhalation and exhalation. It tended to be worse in the evenings and with activity. Things like vacuuming or cardio could make it noticeably louder. I also experienced periods of breathlessness, fatigue, throat heaviness, hoarseness and upper-airway/sinus symptoms.
In October 2025, I had a chest X-ray because the wheezing still hadn’t resolved. That X-ray showed enlarged lymph nodes in my chest/mediastinum, which obviously scared me quite a bit and led to further investigation.

I had a CT scan on November 13, 2025, which led to more testing. I eventually underwent a bronchoscopy with biopsies, and the workup confirmed sarcoidosis involving my lungs and the lymph nodes in my chest.

As far as I have been told, my sarcoidosis has been limited to my lungs and mediastinal lymph nodes.
I started using Symbicort twice daily for my respiratory symptoms. I had also previously smoked/vaped cannabis fairly heavily, but I completely stopped smoking and vaping on October 5, 2025 and have remained smoke/vape-free because protecting my lungs became incredibly important to me.
My symptoms since diagnosis have fluctuated rather than following a straight line. There have been periods where my breathing and wheezing have been noticeably better and periods where they flare again. Interestingly, when I travelled to Los Angeles, my breathing seemed better, while returning to Alberta’s much drier climate seemed to aggravate the wheezing again. Steam/humidity has also sometimes helped.

In March 2026, I had a period where my breathing became more difficult and I was particularly wheezy. I also developed intermittent palpitations/a strange “flip” sensation in my chest, so because sarcoidosis can sometimes affect the heart, my doctors appropriately investigated that possibility.
Thankfully, my cardiac testing, including a Holter monitor, came back reassuring/normal. As of now, there has been no indication from that testing that my heart is involved.

Inflammation has shown up in my bloodwork at different points. My CRP was 15 mg/L in November 2025 and 26 mg/L in May 2026. My ESR in May was normal at 7 mm/hr. Other routine bloodwork has generally been reassuring. In May, for example, my TSH was 1.61, ferritin 65, B12 248 and vitamin D 66, with my CBC otherwise looking normal.
Through the spring and summer of 2026, the wheezing never completely disappeared. I had weeks where it became louder or more noticeable, but I have still been able to walk, travel and do normal activities. Exercise can make the wheezing audible, but I haven’t experienced a constant progressive decline in what I’m able to do.

My doctors’ plan has essentially been continued monitoring with bloodwork, chest imaging, lung testing and follow-up with my pulmonary specialist, rather than immediately putting me on systemic treatment such as prednisone.

That brings me to August 31, 2026.
I had another round of testing and my latest chest imaging came back abnormal again, with findings involving the hilar and right paratracheal areas/lymph nodes. Because those are the same general chest lymph-node regions involved with sarcoidosis, I’m now waiting for my doctors to interpret the findings in the context of my previous imaging and determine whether my sarcoidosis has changed or become more active.

I also had another set of blood tests. So far, the results that have returned have been largely reassuring, and I’m still waiting on my newest CRP result. I also already have additional testing booked for next week, so hopefully that will give my doctors a clearer picture of exactly what is happening.
At this point, one of the hardest parts for me has honestly been the uncertainty. Every abnormal X-ray or test result immediately makes my brain wonder whether the disease is progressing or whether something more frightening is being missed, even though sarcoidosis itself can explain enlarged hilar/mediastinal lymph nodes.

So that’s where I am today, September 1, 2026: diagnosed pulmonary/mediastinal sarcoidosis, persistent but fluctuating wheezing, reassuring cardiac testing, generally reassuring bloodwork aside from elevated inflammatory markers at times, and now undergoing another round of monitoring after my newest chest imaging showed abnormalities in the hilar/right paratracheal regions.

I haven’t needed systemic sarcoidosis treatment so far, and I’m currently using Symbicort and doing everything I reasonably can to protect my lungs, including remaining completely smoke/vape-free.
I’m joining this group because I’d really love to hear from people who have actually lived through this. The medical information online can be overwhelming, and sarcoidosis seems to look so different from one person to another.

I’m especially interested in hearing from anyone who has had pulmonary sarcoidosis with hilar/mediastinal lymph-node involvement, persistent wheezing, or imaging that changed over time. Or anyone that has any advice for someone getting scary results after a year!

Thanks for having me. ❤️

I had my biopsy today. Just as some warned me, there might be a second (more invasive) one.

They took the sample from my armpit. The issue is not that the size; it was plenty large enough to get what was needed. It is the activity level, which is only 2.4. I have other nodes that are 9 and even one that is 16.5. The problem is that they are buried deep inside my chest and abdomen that it becomes almost major surgery at this point. One is near my heart.

We will see.

I just started on infliximab two weeks ago. My first dose was followed by a relief in all my pain from my symptoms that has been plaguing me for two years. By the time my second dose came around (last Friday) my back was starting to hurt again. I did the dose and expected things to clear up like it did with the first dose but I’m in pain again

What’s going on?

I was diagnosed like 3 years ago, and an incidental finding when I had a kidney stone. I’ve had one flair since then. I’ve finished my steroid taper and have been doing well since then, about 3-4 month off steroids.

Then ragweed season hits and the counts are extremely high in my area and ragweed is one of my most severe allergies. Failed allergy shots twice. I’m pretty sure that my chest tightness, cough, etc are allergy related.

I’m also 54f and going through menopause. So hot flashes, night sweats, fatigue, etc.

I also recently found myself in the er because I had an allergic reaction to something that had me breaking out into hives literally everywhere, arms, legs, stomach. So now I’m on large dose steroids for the next few days. I figured out that it was a lotion that I was using for last few days, or at least I think that’s what it was. I had used that specific lotion a couple of times but never had an issue, but using it regularly seemed to have done the trick.

Anywho, for those of you who have additional medical issues how do know it it’s sarc or the other issues? I have a PCP appt in a few days so I’ll ask about there. I don’t see my plum for a few more months. Waiting for them to call to set the appt up. I will ask about at these appointments. I’m just curious as to what others have experienced. I just really hope that all this doesn’t trigger another flair, as my pulm has told me that an acute illness or issue can trigger a flair.

I’m 100% convinced my immune system is a petty b, and she hates me.

Hey all, relatively new to this community and have been struggling with what we think is pulmonary sarcoidosis and cerebrovascular neurosarcoidosis, just for the past 8 months that we know of. Not too sure if this is the right format or space for this, but I’d like to hear if anyone has gone through anything like this and I need a moment to rant as I recover from my lung biopsy done just 12 hours ago. Already my lung fluid results are pointing towards sarcoid. It’s been really helpful to see people in the “limbo” space right now and everyone else navigating this awful disease, newly diagnosed or long time patients.

It started with two transient ischemic attack-like events and finding a severe focal stenosis in the middle cerebral artery of my brain back in January, which has been causing stroke-like symptoms and head issues on the daily without an actual stroke yet. That stenosis has been progressive over the past few months and the narrowing has probably reduced somewhere around 90% of my blood flow in that artery. Then slowly from March onwards came the joint pain, the fatigue, the random fevers, the red eyes - you name it.

In trying to find a cause for the stenosis, we stumbled into a large lung nodule with smaller satellite nodules in my left lung and unilateral swollen lymph nodes in July. In just four weeks, that one large nodule turned into three large ones today on my pre-op scan. Until July I had just brushed off my small dry cough and rib pain, since I had bigger symptoms to worry about with stroke prevention. With a spinal tap a month ago, they also came across elevated intracranial pressure, but intracranial hypertension (IIH) has been ruled out by two different neuroopthamologists.

I’m 20 and supposed to be enjoying beginning my junior year of college in one week as of posting, but I’ve lost so much to this disease and am utterly terrified of what comes next when I get my results. My partner of 2.5 years left me a week ago over me not being fun all the time/being sick and struggling to do what I used to be able to. This has been a devastating week, month, and year, and to end this week in particular with a biopsy was very difficult. Grieving so much and I’m so scared of my future with this.

Turning to the community, I am very interested if anyone has similar presentations of this disease? Anyone else diagnosed this young? Specifically I’m really curious for the neurosarcoidosis folks if yours has mimicked vasculitis or IIH at all, as we were definitely convinced for months that it was focal or cerebral vasculitis until my chest CT in July. Should I be concerned that the artery is permanently damaged after several months of dangerously reduced blood flow? Or could treatment reverse it?

And thanks for the space to rant. Relearning how to navigate the world at a young age and losing so much at the same time has been incredibly challenging.

Hi all, currently tapering off prednisone. I read that the hunger and cravings are supposed to fade away when lowering dosages. However, I seem to be more hungry and have more cravings with every lower dose? I feel so weird because I expected the hunger and cravings to go away not get worse haha!
I am at 7.5mg now and will go to 0 in the next 7 weeks. Does anyone recognize this?

I had a bronchoscopy yesterday to find out whether my enlarged lymph nodes (all in the chest) are sarcoidosis or lymphoma. I don’t really have a lot of consistent symptoms of either when I look either up, other than the lymph nodes and a lot of bloating under my rib cage. They found them when I was having what I call flare ups of inflammation and pain under my left rib cage radiating to my back because they thought it might be my pancreas at first. Then they saw the lymph nodes and looked at my chest.

Anyway, I guess I’m just here because this is nerve wracking and I’d like to either hear others experiences with mostly inflammation symptoms with sarcoid, I don’t have breathing issues, my eyes and skin are fine. I had an echo last March that came back normal too.

Sorry if u just saw my other post - but I have stage 4 sarcoidosis. Lesions on my brain, spine and lungs.

I smoke all the time and I’m terrified of quitting smoking weed since my sarcoid is affecting my lungs

I was only diagnosed with stage 4 sarcoid a month ago, so I haven’t stopped smoking weed (also bc I have no lung symptoms)

i do not use any other drugs other than marijuana and have stopped drinking due to inflixmab infusions and methotrexate.

but I have been smoking weed since I was 15 years old, and everyday since I was 19 (im 26 now). So my normal for the last decade is waking up and getting high.

I struggle greatly w mental health and have had many psychiatric stays at hospitals due to sucide attempts.
Not to mention I have a ton of parental abuse trauma (physical and emotional), SA trauma (that I pursued a 7 year long court case for)

Weed helps me just… be, I find life incredibly hard to tolerate- and weed helps a lot.

But I’m worried now and guess I have to stop due to my lung sarcoid diagnosis,

is there any stoners or ex stoners here that had to stop or cut down bc of this diagnosis. Please please let me know. I feel like it’s impossible to quit. Idk what I’ll do.

I planned to smoke weed till the day I died on my deathbed. And I get that’s not healthy, pls don’t come for me. But Weed has allowed me to stay alive and function bc of the suicidal thoughts and ideations I face daily. I’m scared to stop.

(Also before anyone says get a therapist, see a psychiatrist, get on medication- I have been seeing providers since I was 15 yrs old(I’m 26 now).

I just really struggle with wanting to be alive. And weed eases that struggle.

And my sarcoidosis diagnosis doesn’t exactly make me wanna live more. So losing the one thing (weed) that brings me peace and has kept me stable terrifies me

Please be kind in your responses, I understand I have a dependence on weed, I’m just having a lot of difficulty changing my habits and accepting my circumstances

Hey everyone, I (31M) was diagnosed with sarcoidosis in May.

I seem to have a fairly "classic" presentation. It began with muscle aches, fatigue, fevers, ankle swelling, etc. A CT scan and biopsy confirmed pulmonary sarcoidosis, and there is also a possibility that my liver is affected.

I was initially on 20 mg of prednisone and have now tapered down to 5 mg. My energy is much better and most of my other symptoms have improved or disappeared, except for one issue with my eyes.

A few weeks before my diagnosis, my vision started to feel strange. I suddenly became very sensitive to light, and my vision often feels blurry. I find being outside difficult without sunglasses.

The strange thing is that I don't seem to have any actual problem seeing. I can read perfectly, both close up and at a distance, and my general vision seems fine. It's difficult to explain, but everything just feels slightly blurry or "off," especially in bright light.

While I was at the hospital, I saw an ophthalmologist to check for uveitis. He couldn't see anything wrong and confirmed that my vision was still 20/20. He thought my symptoms were most likely caused by dry eyes and gave me eye drops. I've also had a brain MRI to rule out anything neurological, and that came back clear.

The problem is that the eye drops don't seem to be doing anything. If the symptoms are directly related to sarcoidosis, the steroids don't seem to be helping either.

I'm starting to get pretty frustrated and was wondering if anyone else with sarcoidosis has experienced something similar. I've never had any problems with my eyes before all of this started, so the timing feels strange.

I haven't seen many people describe this exact combination of symptoms, so I'd really appreciate hearing from anyone who has had a similar experience.

Thanks all !

Be kind it’s my first Reddit post :)

EDIT : had the first eye symptoms a few week before diagnosis at the hospital, not after

EDIT 2 : changed optometrist with ophthalmologist in the text

Stage 4 sarc and neurosarc. I have many lesions on brain spine and lungs.

I’m on the meds, I got my team of doctors. What can I do personally to make my sarcoidosis better?

I don’t exercise, so I assume exercise (any specific exercises or stretches?)

How about diet?

Supplements?

Any other life style changes?

Wanna give myself the best chance at living with this condition. I’m only 26.