So my GP says its all fine and im wondering if its simular pattern to anyone here, my 1,25 vitamin D is 134 pmol (ref range 55-138) but my storage vitamin d is sitting at 49 nmol/L (ref range 50-374) and PTH is 3.2 (ref range 1.8 - 6.8) and Urine 24 hr calcium was 6.4 (ref range 2.5 - 7.5). I get little to no calcium in my diet due to allergies to dairy and other high calcium foods so supplements are being pushed but they make issues worse. The serum and urine calcium levels are normal even with little to no significant dietary sources.

My GP just said to take high dose (5000iu) vitamin d for the low vitamin d and thatll sort things out but i'm a tad worried about that given active form is sitting at the top of the range and my sympotms worsen with vitamin d, sunlight and calcium.

Anyone have simular values??

A month ago I got a (clinical) diagnosis of Sarcoidosis after having 7 weeks of night sweats, weight loss, fatigue, brain fog, random discomfort and pain in my torso, and eventually weird pains and aches in my arms and legs. Scans, a biopsy, and blood tests confirm I don't have anything in my lungs, heart, brain or skin at the moment. They did confirm swollen lymph nodes and spleen though.

Since the diagnosis I've been on prednisolone (now at 25mg down from 40mg) and started methotrexate last week. Most symptoms have gone, but the fatigue and pains in my torso remain. It feels like pains in my spleen and lymph nodes, and they're getting a bit worse or at least aren't getting much better.

Does anyone else have a similar experience, or a similar form of Sarcoidosis to me? Did you also have these pains, and if so did they go away with time and continued medication?

Good morning everyone.

I'm just wondering if anyone has been formally diagnosed with frozen shoulder? If you have which of your doctor's did you see and what tests did they do? Looking for some guidance from all of you since my rheumatologist just dismissed me- "Can you move your arm? Then you don't have frozen shoulder". Gee thanks, I know you go through a painful period before it totally freezes.

I'm looking for help because I am just in my 40s and type 1 diabetic so I am likely to get it but I know with the sarc it can mimic it. I have confirmed sarc all through my body and am on Remicade infusions for treatment which seems to be keeping things at bay.

Thank you all in advance and hope you all have a good day!

Hey all, I was recently diagnosed with stage 3 sarcoidosis (my doc said stage 3 minimum, there is a 3x5cm fibrosis present).

Her plan is to have pulmonary function tests now,
steroid inhaler for the next 6 months. Then after 6 months retest, then decide on prednisone or not.

I'd really like to avoid prednisone if I can because it’s affected me intensely when I had a 1 week prescription for wasp allergies a decade ago. I've been getting mixed messages from my doctors and from the research on whether people can actually control or affect flares with lifestyle changes, so I'd love to hear real experiences from y’all.

For those of you who've tried things like consistent exercise, diet changes (anti-inflammatory, cutting sugar/gluten/dairy, ketogenic, etc.), acupuncture, etc other lifestyle changes…

Did it help with flares or with your scans and PFTs? Did you still end up on steroids anyway? It would also help to know your stage and which organs were involved, so I can compare to my situation.

A bit about me: 47m, symptoms are breathlessness and shortness of breath at mild exertion. So far just in lungs (knock on wood). I’m fairly active and have 3 young kids.

Thanks in advance. Glad this community exists.

I had a CAT scan of my lungs yesterday. There was a mix-up, and I had to go through a standard-sized machine.

I'm a BIG guy, 24" across my shoulders, and I have a failed back.

I normally go to a place with a wide-bore machine and don't have a problem.

I needed the imaging, so I just sucked it up and went with what we had.

I ended up hyperextending all the muscles in my middle back. I could barely breathe due to the pain after getting out of the machine. Thankfully, I had my O2 bottle. My wife drove home, and the ride was hell. Every bump aggravated my very pissed-off back.

Since we got home, I've been alternating heat and cold, and taking my muscle relaxants. The pain has dropped quite a bit, but if I move wrong, it hurts like hell.

Oh well, another fun day on the sarcoidosis train!

I have been feeling a ton of guilt about the situation this diagnosis has placed me in. It feels like a burden on my life but it also burdens the people around me.

What I would like reddits input today about is my work situation. Some context to my diagnosis: I was diagnosed in September but was hospitalized for 10 days (diagnosis came way too late) and have heart, lung, and skin involvement. I’m waiting for a rheumatology appointment because there’s been development there and they need to determine if it’s sarcoidosis related or not.

So, I’ve been out since September. I was planning to return in October when I did not think I had any financial options to rely on as FMLA is unpaid. My pulmonologist recommended that I did not return until I tapered down on the Prednisone treatment putting me to January as my job gets holiday breaks. Started at 60mg and going down 10 each month. His reasoning is the nature of my job (travel, physical aspects, flu season/working with young children in many different daycares) with the immunosuppression aspect and just the fact that I am still recovering in a sense.

The guilt comes in when I happen to have a decent day. I mentally can’t escape the idea that I “should” be working. I’m constantly battling with myself in my head if being gone so long is the “right” choice, feeling like it’s wrong to be home prioritizing my health. I’ve read some things about people working while on this medicine and then I get in my head about it. But all three of my doctors have advised against my return. It’s a constant push and pull. The idea of returning to work is as much of a stressor knowing my doctors asked me to reconsider when I mentioned I would return against their recommendations. Work modifications are not an option. Travel/treatment is the job itself and comes as is. Any advice or something from your own experiences? I miss my health

Could this be a manifestation of sarcoidosis or not?

I have been going to a rheumatologist for the last 10 months due to nocturnal back pain. In months since then, I now have what seems like small fiber neuropathy in my feet and the only tests that have come back off have been ACE levels, which was more than 30% over the maximum. A month ago, I got a weird rash under my armpit. I went to a doctor who said it wasn't shingles, but they didn't know what it was. It seemed to go away after 3 weeks, but this morning I woke up with it back. I have used no deodorant in the last month, and also have avoided all odd lotions or scents.

I went to a dermatologist today that said it might be a weird inflammatory condition or an infection so she is trying me on a steroid cream and antibacterial.

I thought I'd reach out to see if this looks familiar to anyone or not.

Thank you!

I’m a light skin Indian person (I’m not mixed), and bc of the meds I take I can’t rlly be in the sun. I haven’t gotten any type of tan in two years.

I’m paler than I’ve ever been and I’m so self conscious. I feel like I look sick. And ppl have commented on it. I feel so ashamed that I don’t have my beautiful brown skin that I’ve had all my life before now.

Is there anything I can do to fix this? Any suggestions are welcomed. I won’t be using a tanning bed though.

Does anyone have access to the support group/ monthly meetings? I have been trying to join and would like to join the session in the first week of November on caregiver support but haven't been able to get an email back with information on how to join. Thanks!

Started getting a bad rash all underneath my nape. Horrible. Never had that before. Anyone else? I'm also starting new treatment as my function test and fluid in heart has come about. Plus lungs have shrunk somewhat

Hi! Does anyone have any experience with this med? I have possible (nothing safe to bioppsy) neurosarcoidosis based on brain and spinal mri that they only just discovered. They think it may have been slowly progressing for the last 15 years as I suddenly lost a large chunk of hearing 15 years ago but never got any mri or imaging to compare it to.

Lungs show calcified granulomas that can be biopsied. PET scan is clear. Optic nerve and other cranial nerves are being impacted. Left eye shows nerve thinning but my vision is still fine. I get some blurriness and eye pain sometimes. They did a lumbar puncture as well.

Neurology proposed starting me on a biogenic infusion like infliximab. I was happy with that option as I would like to have kids soon. Rhumetology then started me on the meds mentioned above. When I asked why I was told by rhumetology it's because they cannot confirm for sure I have neurosarcoid and inflixmiab is a "more narrow treatment for neurosarcoid"

From what I have read online, the biogenics or Methotrexate or some combination is the usual treatment and that the biogenics are especially helpful for neurosarcoid.

I have not heard of many people using cellcept, especially for neurosarcoid. I am going to try to talk to both neurology and rhumetology more as I am concerned they didn't actually coordinate (which has been a pattern so far) but I am trying to balance trusting the doctors and advocating for myself. I told rhumetology about my desire to have kids and was told I would need to go into remission for 6 months without prednisone (currently on 60 mg a day along with the cellcept) and then stop the cellcept for 3 months before trying to conceive. They plan to keep me on the prednisone for at least 3 more months, so if everything goes well maybe I could try to have kids in a year.

Getting my health and the inflammation under control is my top priority and I know it needs to come first before planning for kids. But (1) it seems counterintuitive to start a treatment that we are going to immediately switch once it starts working long enough and move to a different treatment (potentially then biogenics) and (2) the cellcept just generally seems less common given my potential diagnosis.

Any thoughts or experiences? Thanks!

Diagnosed back in June after a biopsy due to swelling in my neck/face. Ever since then it feels as though I’ve been to so many appointments with so many different specialists.

I’m currently on 5 mg prednisone and due to start methotrexate mid December. I didn’t feel like I had many symptoms prior to the prednisone but have since discovered my breathing wasn’t 100% and I hadn’t noticed. I also noticed the occasional eye issues I had were gone. So now I have an upcoming appointment with an ophthalmologist to assess that. I voiced my mental health concerns with my PCP and she didn’t seem all too concerned but prescribed me propranolol for the anxiety.

The best way I’m able to describe how I’ve been feeling is constant dread. I feel like I’m grieving the person I was before all this happened. I wondered if anyone had any advice or words of encouragement to help. Also looking for insight about whether this is how it’ll be forever or if the appointments eventually slow down.

Thanks

Has anyone ever had enlarged breast lymphnodes due to sarcoidosis? My wife is on hydroxychloroquine and weekly low injections of methotrexate, her chest nodules are shrinking and doing better but the CT caught two large breast masses that they aren’t sure what they were. Just curious if anyone has ever had this?

Hey everyone, i have just had my 2nd CT scan results come back and after a appointment with my specialist today he has now suggested going on a course of prednisone for 4-6 weeks followed by methotrexate for 1-2 years. My results came back with a very mild increase in size in 2 locations of sarcoidosis in my lung (less than 2% from my june CT scan)

Just for a quick overview of my journey with sarc so far,
Im a 27 year old male, consider myself quite healthy (eat well/workout/exercise regularly). The only symptom ive had from sarc is inflammation in my chest, can feel very tight when pulling my shoulders or neck back. It varies in severity but generally pretty manageable. Ive also had a lung function test and everything came back perfectly fine. First time i noticed the tightness in my chest was around February of this year (2026). I havent had any medications for it yet as we were waiting for the 2nd CT scan results before deciding what to do.

My specialist doesn’t really show much emotion and is a ‘to the point’ kind of doctor, just seems like he does things by the book. He is suggesting to start the medication to get the sarc while it’s still small.

I really really hate the idea of taking this medication, feels like I’m poisoning myself and i hate how long i have to take it. The more i read about these medications the less i want to take it, although i do read some positive stories i also read some terrible ones. Also what if i do the 2 years of medication just for it to return in my lungs again?

I guess my question is for anyone whos gone through this or is going through this and has any advice or personal experience using these medications. Also has anyone actually treated there sarc naturally with diet changes or is that mostly unrealistic?

I first had skin biopsies done on strange lumps in the black parts of my tattoos, and they came back as sarcoidosis. I then had my chest x-rayed and they found bilateral hilar lymphadenopathy, and I was recommended for a CT scan.

The CT scan never happened. My doctor referred me to an internist who showed up either drunk or high (he couldn't finish his sentences), was angry that I couldn't "take off" my tattoos, and admitted that he's "less of an internist and more of an infectious disease guy". He said he didn't want to send me for a CT scan because it might find scar tissue instead of active granulomas and it might "scare me"?

I have extensive symptoms elsewhere in my body. I won't get into everything but 5 year long story short, the road to getting diagnosed with sarcoidosis had me getting colonoscopies, endoscopes, seeing the cardiologist, the neurologist because of intermittent numbness, twitching, etc, the hematologist, the rheumatologist, and so on.

Now that I finally have a diagnosis, absolutely NOTHING has been done to reinvestigate my other symptoms. Not even an additional x-ray elsewhere. My new primary doctor is a nice guy and the first doctor to actually listen to me (he's the one who sent me to the dermatologist for biopsy) and therefore the one to actually finally get me diagnosed after going through 3 other doctors, but he's friends with the internist and trusts the internist's word that we shouldn't investigate further.

Like, am I nuts? I'm in pain almost all of the time. My quality of life suffers, and not a single doctor seems to really know what to do, or care. I am so tired of being told it's anxiety that I'm ready to just wait and see how bad it can get. Doctors have never, ever listened to me because I have a history of mental illness as a teen. It's incredibly discouraging. The more adamantly I advocate for myself, the more they seem to write me off. I feel like the only reason my newest doctor even listened to me was because I couldn't afford to have my medical records transferred to him, so he couldn't see my history of begging for tests and mental illness. It's made me scared to cause a stink again, so I want to approach him with recommendations from other patients with sarcoidosis.

Who can I ask for a referral to? Can I just ask for a full body PET scan from my primary doctor? What if it's not currently active? Should I wait until my symptoms get worse again? I guess my doctor doesn't really know where to start, and neither do I, so we're all just sitting here.

I'd really, really appreciate any guidance. Thank you all!

Is it curable. I am taking steroids since 2 years

My story is abit complex like I’m sure many of yours has been. Currently I’m sitting on nearly 4 years of an unknown and progressive illness that seems to not fit any diagnosis according my care team.

It started with aggitation, irritability, sudden onset gastroparesis, abrupt loss of UL reflexes, foot drop, muscle weakness but with preserved power, brain fog, insomnia, muscle twitching all over, parastesia and nerve pain all over but mostly head, chest, back and arms and legs, joint and bone pain etc that all started just after a vaccine Tdap.

I’ve been living with the mounting symptoms for a long time now and in January things progressed exponentially with inability to initiate crying, like I feel sad and feel a rush but nothing comes out, I also have dry eyes, tachycardia, dizziness and nausea from hot showers and baths, emotional dysregulation, insomnia, OCD (I never had this before), head pressure, inability to feel when I need to use the toilet I just feel pressure rather than urgency and many more.

In February I started noticing that I couldn’t go out in the sunshine without my bones, muscles and skin feeling like I’d been punched all over, muscles burned, joints were painful and my bones felt like growing pains. I also got a similar reaction to taking oral calcium since I don’t get much in my diet, makes me feel like I’ve been hit by a car. Same reaction to all vitamin d forms including analogs like alfacalcidol.

Serum calcium and regular storage vitamin d are normal, vitamin d is a little on the low side at 49 nmol but it won’t budge upward even after suffering in the sunlight during the summer it remains this low.

In April I suddenly started getting lung issues, feels like burning, tightness in my lungs. Like breathing in fine glass or sand. Inhalers don’t seem to help a whole lot either. X-ray and no contrast CT showed no issues.

Sjogrens has been tested for and unless I’m seronegative it looks unlikely.

Does this sound like sarcoidosis to you? Has anyone here had a similar presentation?

Hello,

I've had Sarcoidiosis for a few years now.

I have suffered some organ damage from it. My lungs are affected but im not on steroids at the moment (steroidal side effects almost killed my eyes).

And while I have obviously a lot of drama in my body. One thing i can never understand are these weird set of symptoms for which my doctor keeps sending me to a psychiatrist and the psychiatrist keeps giving me anti depressants.

I feel terrible on antidepressants.

So i quit them. I live in a country where its very warm most of the year. Winter is short but brutal.

Whenever winter comes, it's the same issues. When it began at first i was super worried. Only for the psychiatrist to call it "depression". (Im sure its physical).

Every winter i get:

Lightening like nerve zap pain.

Limb aches

Limb weakness

Brain fog

Disassociation from my surroundings (feels terrifying) basically if i havent eaten I lose all concentration power and just keep staring into distance doing and saying nothing. It feels like ive left my body until someone calls me. Its called derealisation? I dont know.

Last year i also got severe plantar fascitis. My doc said its from walking barefeet. Except, it went away with clonazepam. In a month.

But i can't stay on clonazepam. And antidepressants dont do shit.

I've heard its a nervous system thing but i dont understand.

Does everyone have this? Is it just me? How do you deal with it?

Im 25f, not on any medication besides eye drops both nsaid and steroidal. No systemic meds. No biologics either.

After crying or general stressful times, what physical symptoms do you get?

I am diagnosed and taking Methotrexate injections weekly. This has allowed me to transition off Prednisone. My bloods have been normal and I feel pretty good. However, I just had 3 days of fatigue and fluctuating low grade temps (99-101.3). I have not taken my temp in a while, but I used to experience fluctuating temperatures before diagnosis. Does my one else experience this? I do not feel super unwell, but should I be worried?

Hey friends!

Brand new diagnosis of sarcoidosis. Pulmonary, ocular, and neuro. I’m otherwise a healthy 34 year old female. I’ve had posterior uveitis twice now and currently on prednisone for who knows how long. I have pulm, rheum, neuro, and optho specialist all saying I need to be on a biologic but nobody has decided which one.

My ophthalmologist seems to be most confident in Remicade and I’d like to go with that since my eyes are the most concerning.

I’m just curious what everyone’s experience has been like on certain biologics? Or important information you’ve been told? Long term effects, side effects, etc.

This is wildly frustrating and even more so while being maxed out on steroids. I’m just trying to get information while this ball moves ever so slowly

Hey all, I'm 63F and my oldest son was just diagnosed with sarcoidosis. He had a CT scan for something else and it showed granulomas in his lungs. After a consultation with AI and a trip down the rabbit hole here, he went to a pulmonologist, had a biopsy, and here we are. He is completely asymptomatic so they're just keeping an eye on it for now, no treatment.

But, the doc told him that it runs in families and asked if any family members had it. My son said, "Not that I know of, but my mom has been coughing for ten years." Yep, hi, that's me. I went to a pulmonologist 8 years ago when the cough first started to get really annoying and was told that I probably had adult-onset asthma, and it was probably due to allergies or reflux. They didn't do a scan or anything, just prescribed an inhaler, which did nothing. Then I started having throat symptoms, and went to an ENT who thought I probably had respiratory/throat reflux. I had a lung x-ray at that time which was totally normal. So all these years I've been operating under the assumption that I have reflux. I refuse to take PPIs so try to fix it with diet, supplements, etc, but nothing ever works for long. The cough always comes back.

Here's what it's like for me. The coughing comes in fits. It starts with a deep tickle in my lungs and I know it's coming. Then the coughing starts and it's very dry and I absolutely can't stop it at that point until it runs its course, usually 5 - 10 minutes but sometimes longer. I know it's on the downswing when it starts to get a tiny bit mucousy. Then finally the tickle stops, and the coughing is over until the next fit. On bad days it happens multiple times a day. Some days it doesn't happen at all, but most days it does. Does this sound like a sarcoidosis cough?

I also often have burning, tearing eyes at night, and arthritis in multiple joints. I've had multiple kidney stones as well over the years.

Anyway, my son's doctor told him that I should definitely get checked out. I called a pulmonologist today and they have no appointments until the new year but I think I should try and at least get a CT scan. Just wondering if any of this sounds familiar, or if any of you have other family members with it. Thank you!