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!

My mom has been diagnosed with sarcodoises last year. Were happy that we finally received a diagnoses because shes been feeling horrible for years beforehand but we were told that it is not a disease that can necessarily be treated. It started with her lungs and has gone to her lymph nodes, she has not been checked if it spread more but the lungdoctor told us that when flare ups get bad we can do a prednisone treatment but my mom is strongly against it because she is afraid of the side effects. Are there other options people have received?

Hi! I'm new to the sarcoidosis world. I'm a 62F and a cardiac scoring test earlier this year found lung nodules and mediastinal lymphadenopathy. Lymph node biopsy in August found non-necrotizing granuloma, so sarcoidosis it is! But, didn't really have any notable lung symptoms except a little cough that's been more noticeable since the biopsy.

Was referred to a regional nearby sarcoidosis clinic for follow up and finally have my appointment next week. The sarcoidosis stuff is apparently part of heart and lung transplant department, so that's super scary feeling, but also the imposter thing - all I have in my lungs is this little cough! I can go for an hour long cardio walk with no problem. Makes me feel like this is overkill for me. I feel a bit guilty to be potentially taking resources from others....

In the meantime, though, so many other system things I'm wondering if they are sarcoidosis, too. Like the weird visual disturbance and bouts of eye inflammation I've had the last year and a half. And the first-time episode of A-fib I had last month (scary!). And the decreased kidney function that started about 3 years ago and has no particular cause identified. Oh, and what about the peripheral neuropathy in my feet that started 8 years ago and again, no cause identified? So many things! And Dr. Google tells me any could potentially be caused by sarcoidosis.

I read some of the things some of you go through in forums like this, and I think, wow, this could be so much worse. But maybe it will be eventually for me. But going to this clinic and being proactive can help keep everything as good as it can be, so it's reasonable to do.

Then I look at how much all this stuff costs, and even though I've been paying into the health insurance system for decades with not a ton of claims, it still doesn't feel great to be using so much care when I don't feel that bad.

I'm not even sure why I'm posting this here right now. I suppose finally getting within a week of the much anticipated first clinic appointment has me at loose ends and not sure where to turn my thoughts amidst all the uncertainty.

So I guess just thanks for reading. And peace and blessings to all of you out there suffering.

Hello All,

Just wondering if anyone has missed an infliximab infusion before? It’s been 12 weeks since my last dose, I had to stop as I was getting a biopsy, and the symptoms have been awful for the past 2 weeks. Fatigue and headaches have been unbearable.

I finally had an infusion this morning as I was all cleared from the biopsy and could start them up again. Just wondering if anyone has been in this situation and how long it took for your symptoms to feel settled?

Thank you!

I had appointments with my rheumatologist and pulmonologist yesterday. We ended up with three doctors, four residents, and me in a room.

Lung function continues to drop. So, for that, 90 days of prednisone to help until the mycophenolate mofetil starts working, and another inhaler to go with the Advair; continue the Humira.

They also ordered full imaging of my spine and more chest imaging, and an appointment with a spine specialist.

They put me on oxygen therapy, but only when I'm active. My O2 sat was 84 when I walked in to the nurse who took my vitals and never got higher than 90.

They are also going to test me for bird fancier's disease since I've had a cockatoo/cockatiel continuously since 1988.

There's no doubt I have sarcoidosis, but it's possible that the BFD is sitting on top of it.

I've lived with chronic back issues since 1979, but they feel that my current bout of flare-ups in my lower back could be sarcoidosis-related.

The fun just never stops on this ride.

T

Still waiting for my biopsy to confirm which is next Wednesda. Just tying to get all my ducks in a row. I already have heart failure, diabetes and neurological issues. The sarcoidosis team said that they are 95% sure I also have sarc based on the pet scan I just did. It is currently effecting both lungs, heart and lymph nodes. Honestly using immunosuppressants and steroids scares the crap out of me. I’m already immunocompromised as it is.

just wondering what everyone’s feelings are dealing with the treatment?

Hi All,

So I've been dealing with an unknown something for a couple of years now, first with intracranial hypertension, then with optic nerve inflammation and granuloma which ended up needing steroid injections and uveitis, then skin lesions which arent fully responding to steroids either but are they only thing we can biopsy and the one biopsy that has come back definitive has come back as granuloma annulare which obviously isnt sarcoid. But none the less my three specialists are looking at sarcoidosis as a diagnosis? Is this common? The ophthalmologist who first saw the granuloma in my eyes was the first to bring up sarcoidosis because of the pattern, however my bloods have continually been negative?

Hi!!! My name is Paulina, and i’m 22 years old.

I was diagnosed with cutaneous sarcoidosis when i was 4, and i started treatment soon after. I got better and didn’t experience any severe symptoms until i was 20!!

Since then, i’ve been dealing with episodes of severe fatigue, nausea, vomiting, and significant weight fluctuations (both weight gain and weight loss)!! Also, since i was 15, my blood tests have consistently shown signs of inflammation in my body, but no doctor has been able to figure out where it’s coming from.

Last week, i had a PET-CT scan, and the results showed an abnormality in my upper back. That area doesn’t hurt, and i don’t have any visible sores or lesions, so i was pretty shocked when i read the results.

I still need to see my doctor to discuss the findings and figure out what’s going on, but i wanted to ask here if anyone knows whether cutaneous sarcoidosis could be related to these symptoms or if sarcoidosis can affect other parts of the body, even without any obvious skin symptoms.

I’m from Chile, so honestly, i wouldn’t be surprised if my doctor still couldn’t tell me what’s going on hahah 😿

Hi all! I’m a 27F and had just about given up on ever trying to identify what was wrong with me until my current flare started with some new symptoms and I started realizing maybe my random skin and eye issues weren’t just “weird allergies.”

I had no idea the constant eye flare-ups I was getting several times a year could be autoimmune, esp. sarcoidosis, related. One or both of my eyes will turn red and painful, and usually light-sensitive. I also thought I just had sensitive skin, and that’s why I got weird rashes that would take weeks to months to go away. I had extremely painful erythromelalgia that flared in the nerves of my hands in feet that I assumed was a reaction to medication or something.

I thought my autoimmune issues were limited to neuro and joints—Ive had flares of unexplained arthritis in my knee, both shoulders, and ankles since 2018, and then in the last couple years, had SSNHL, dysphagia, balance/vertigo issues, PVC’s, and a bunch of non-specific white matter lesions.

I was ANA/RF/HLA-B27 negative, and we chalked it up to undifferentiated connective tissue disease and started cimzia.

My latest flare started with air hunger, and I thought this was anxiety or exercise-induced asthma. But it kept getting worse, and then we found a lesion in my eye called PAMM. My calcitriol was also high, but I shrugged that off as that I must have been unknowingly taking something that supplemented my VitD. I now know that’s not true, bc the supplementation-supplied VitD2 level was near 0.

I went to make sure I didn’t have a blood clot or urgent heart issue, and my chest xray was clear. But here I am, still wondering if this is all in my head and I’m just reaching to make connections that aren’t there. Maybe the scar was just healing slowly, and maybe the rashes were just eczema, and maybe the lesions were just from migraines, ya know?

Does anyone here have ataxia as part of their symptoms? I am newly diagnosed with sarcoidosis and will be going for brain and spine MRIs next week to investigate for neural sarcoidosis.

In the last week, the episodes which were sporadic and not that frequent, are now much more frequent. They last a couple seconds and feel like my foot does not know the ground is below it. I lurch very slightly and then my foot comes down hard on the ground. It happened twice this evening and this is the first time in my recollection that I had them twice in a day, no less within an hour of one another.

I also felt very lightheaded beforehand but I was also hungry. I ate and I feel better but not 100%. I am not sure if it is related (it has not happened before ataxia bouts before).

I have had a great deal of stress in the last couple of weeks. We are temporarily relocating to have our apartment renovated tomorrow and have had to clear out 30 years worth of stuff, get stuff to storage, etc. and I know that stress is not good for sarcoidosis but this was planned before I knew. Could this increase in the ataxia attacks be stress induced?

I will be messaging my doctor.

Hi everyone, I live with Sarcoidosis and Congestive Right-Side Heart Failure. I’m on a fixed SSDI income here in Maine and am trying to figure out how to gain my independence by getting my license and a reliable vehicle so I can stop relying on changing support systems for medical rides. Saving on SSDI is incredibly hard. Has anyone in a similar situation found specific disability vehicle grants, non-profit programs, or specialized low-income medical transit resources that helped you get on the road? Any advice is appreciated.

Today was supposed to be liberation day.

I hate this disease. So much for methotrexate (only). In June, all the inflamation had died off, so we tapered off prednisone. Today, we reassessed only to find a 3x flare-up over baseline. Back to Prednisone (30mg daily) I go to lower the damage.

Also, AI sucks now. I needed a translation to learn that it's returned and spread to my outer heart wall. I did not want a fake doom prognostication that likely the doctor will just swat away.

Can't wait for tomorrow. I wish you all better days and wellspan.

In peace.