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?

I am a 30 year old female. I Suddenly lost a large chunk of my hearing when I was about 15; doctors never knew why but thought it was genetic or nerve damage. I was scheduled to get a cochlear implant this fqll because I continue to lose more hearing and went in for a routine mri to prepare for the implant. The mri showed a bunch of abnormalities, mainly enhancement/ inflammation of the dura and other areas, impacting various cranial nerves including my hearing, optic, and the nerve that affects facial movement. It may explain my initial hearing loss, it may not is what I am currently being told. They ended up sending me to the hospital for a full workup. Lumbar puncture showed incredibly high protein, some yellow fluid. Blood work was all normal. CT scan and pet scan of full body/ lungs showed calcified granulomas suggesting an older infection or cause (nothing active). Neurosurgery said that a biopsy of the area of my brain is too risky. Being seen by neuro-immunology for the first time tomorrow and continuing care from rhumetology. Rhumetology seems somewhat familiar with sarcoidosis but less on the neurosarcoidois portion, which is expected. No neurologist at the hospital treating me inpatient or out patient specializes in neurosarcoidosis.

There is a sarcoidosis center for excellence at a hospital not too far from me that I am trying to get into.

All of the providers so far think it's neurosarcoidois and the current plan is to start me on high dose of prednisone for 30 days and eventually immunosuppressants. Rhumetology seems to want to keep me on the immunosuppressants for life. Is that typical? I have read about a lot of cases where there is an eventual taper/ paired with close monitoring and folks go into remission.

I am a little scared the team treating me doesn't have a ton of background in this and will over medicate. I'm scared of the effects of the steroids and long term immunosuppressants. I'm repeatedly told the way that I am presenting (no sarcoid elsewhere, potentially (15 years) of chronic, but relatively stable dura enhancement/ inflammation. That's all good news but a bit scary too because I can't easily identify flares. I have had a really hard time getting the different departments that treated me in the hospital to agree on anything - diagnostic testing (one department wanted a pet scan, another wanted to start steroids immediately); treatment course (immediate iv steroids vs oral steroids to be started after the PET), etc. I can't seem to get the doctors on the phone, the secretaries are outright mean sometimes (not the easiest thing to schedule appointments or talk on the phone with my hearing impairment).

Anyone have a similar representation of neurosis? Any general tips from anyone on how to best advocate for myself and the coordination of care / what questions to ask? Trying to balance trusting in the experts/ doctors here but also not be on meds forever I may not need or may cause long term negative effects.

Open to any thoughts, comments, insight! Thank you everyone!

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.

I was diagnosed exactly 1 year ago and since then I have been on prednisolone and embeta XR 50 Metoprolol.

My dosage started from 60mg pred daily and now I'm at 5mg every alternate day. I gained a lot of weight initially and also ended up getting dumped by my ex due to that, since then I have lost most of that weight and I'm back in decent shape.

What I want to know is, I'm also having some kidney issues My creatinine is always close to 1.4-1.5 even though I drink a considerable amount of water. Is anyone else also facing this?

Secondly I don't know what to expect, regarding my future. Will I have a short life?

I am done with my prednisone taper. My taper schedule was from 15mg to 0mg in 9 weeks. This is my fourth day without the stuff. Since the first day without the pred I get random nauseous attacks and throbbing /aching headaches, especially in the evenings it’s the worst. Sometimes just headache, sometimes just nausea, sometimes both at the same time. In the morning it’s gone. I am quite tired during the day but that was expected. No low blood pressure, no dizziness, no other symptoms. Could this still be withdrawal?

Has anyone been prescribed medication for tiredness due to sarcoidosis? I’d be particularly interested if you’re from the UK. I’ve recently been diagnosed but am yet to be picked up by the specialist team. For me, the tiredness is absolutely debilitating and probably my most life-affecting symptom. I won’t be treated with steroids as my lung function is still normal but am interested if they’d be likely to treat me for the tiredness specifically. TIA!

Hello new here. Facing a possible diagnosis, now just reading and looking others experiences through the diagnostic period.

So a week ago I went to my primary care doc after I was not recovering from bronchitis/pneumonia. I also was experiencing headaches, nausea, no appetite and fatigue.

She gave me a rochephin shot and ran labs. I went to bed because I work night shift and work up to multiple voicemails and my phone ringing. My calcium was 16.5. I was told to go to the ER. Me being a stubborn nurse was like can I work my shift and then go? My doc was like no.

I spent 5 days inpatient. I had an AKI (acute kidney injury) with my GFR at 23 and multiple abnormal renal labs. My calcium was 19 when I arrived at the hospital. I got lots of IV fluids, scans, labs, endocrine consult and still no clear answers. Parathyroid labs all came back ok. So far we are still looking at Sarcoidosis and cancer.

No nodules have been found however they have only done abdominal and chest CTs. I didn’t think I had a family history but found out that my paternal aunt did have sarcoidosis. Also they asking about rashes and I was like no I don’t have any. However after I got home and had time to research and think. I realized that 2021-23 I had persistent rashes on my shins that would not heal.

I am back at work but struggling. I’m already having chest tightness and difficulty breathing again. I’m off after tonight thankfully for 2 1/2 weeks. However that’s because I’m getting married. So not much time to rest.

I've had erythema nodosum basically my entire adult life. It has never completely gone away between flares. I almost always have at least 1 to 3 nodules somewhere, including unusual places like my forearms and the bottoms and pads of my feet.

But this current flare is the worst I've ever experienced in my life.

I've had worsening joint pain for over a month, but now my knees, ankles, hips, thumbs and other joints are so fucking inflamed and painful that I can barely get out of bed. I currently can't walk properly because I have extremely painful nodules on the bottoms of my feet on top of the joint pain.

For the last 10 days I've also been running a low grade fever, which is completely new for me. I've never had fever associated with my inflammation before. It tends to come on at night and starts with horrible flu like body aches.

I ended up in the hospital and they kept me there for about 30 hours. My inflammatory markers were quite high and they did a bunch of testing, but they couldn't really figure out what was causing everything.

The pain medication isn't touching the joint or erythema pain. I'm basically only taking Panadol and other pain relief because it helps bring down the fever and takes the edge off the body aches. The joint inflammation and EN pain are their own fucking monster.

I'm exhausted. I've spent so many days in bed that my head and neck hurt from lying down so much. This is genuinely the worst inflammatory flare I've ever had.

I've been told I need to see a rheumatologist and I'm trying to get that organised as quickly as possible. I'm not asking Reddit to diagnose me. I'm just trying to understand whether people with sarcoidosis or Löfgren syndrome have experienced anything similar.

Did you have severe EN, joint inflammation and recurring fever like this? Did the fever tend to come at night with body aches? What actually helped when you were this inflamed? Did you need steroids or another treatment? How did your doctors eventually figure out it was sarcoidosis or Löfgren?

I'm just confused, exhausted and so fucking sick of being in pain. I've lived with EN and joint pain for years, but I've never experienced anything remotely this bad.

Thanks for any advice.

To be honest, I don't really know how to feel lately. I made some big changes to try and make everything better, but instead, my reality is exactly the same—just without any way to dull the edge.

I suffer from sarcoidosis, and it completely ruined my life. It alienated me, and now I have no friends or anyone to talk to. I just don't have the energy I used to have before my diagnosis. I used to have my work to keep me sane; I truly loved my job, and now I find myself constantly reminiscing about it.

Lately, all I want is just someone to talk to. I'm just here venting about life because it’s heavy right now. Any advice, encouragement, or support from people who understand this condition would be appreciated.

I’ve yet to find anyone with their own experience on this topic. I’m recently diagnosed with systemic sarcoidosis (heart and lung) from early September. I was hospitalized for 10 days (half ICU) due to fluid build up around the heart. I am just now coming around to physically feeling better and am due back at work in a week. However, I am on 60mg of prednisone for at least another 2 weeks and I work with preschoolers as an SLP. I also travel from daycare to daycare with this position. I am already planning for changes of materials, changes in routine to allow for maximum sanitation, and masking up for therapies. But I am terrified of the lack of immune system I have and the population I work with. The nature of my job is so involved with these kids and their space/germs. I won’t be on a lower dose until the end of December. This is such a long time to manage all of this in the midst of cold/flu season. Has anyone dealt with the need to return to their job but also their job being such a risk to their health?

I was diagnosed a week ago based on biopsies and symptoms. My lungs appear to be the least of my problems. I am being investigated for Neural sarcoidosis, optical sarcoidosis and now cardiac sarcoidosis. The neural seems to be limited to neuropathy and ataxia. The eyes--I have dry eyes and they feel like sandpaper. I started to have bouts of breathlessness at night when I try to sleep. I had it for two nights and then not for two nights. Will see what tonight brings. I had to sleep on an extra pillow to sleep at all. I assumed it was stress but people told me to call the cardiologist. At first, the front desk gave me an appointment weeks away but when my cardiologist heard the details, they gave me an appointment on Monday. I have read that the fact that my pulmonary function test was good may make it more likely that this breathlessness is related to cardiac sarcoidosis.

I had assumed that neural sarcoidosis was the most serious one but I think cardiac is...and I may have both. Damn, I am feeling picked on and scared.

My challenge is being a highly informed patient, up on the latest drugs and diagnoses ... Without this taking over all my thoughts and becoming my second job.

:-/

I do think there is such a focus on blood test results and lab cultures and medications that one can forget that some side effects from a disease like this are psychological.

Reading through some of the posts here has given me this impression.

Be well.

I do have neurosarc as well as ICP, IIH, Dysautonomia, a CSF/skull base leak (which was SUPPOSED to be repaired 2 weeks ago but no surprise, it failed and now I’m leaking even worse), it was caused by thinning of my cribriform plate and that lead to an excavating meningocele which I will say was repaired correctly. I have bilateral papilledema, as well distal transverse sinus stenosis and focal distal transverse sinus narrowing. I also have an empty sella from when a granuloma crushed my pituitary gland and my hypothalamus is twacked out as well due to damage. I have been having out of nowhere on my right side a red, bloodshot eye that feels like there’s pressure behind it. It also waters and just feel swollen and my vision has been doing some (even) weird(er) things than usual lately. I found this tiny little “seed” looking bump on my inner bottom lid and it doesn’t at all feel like it’s scraping my eyeball or getting in the way. I’m wondering if this is the beginning stages of ocular involvement of the sarcoidosis. Thanks for your opinions!

Hello! I’ve been thinking about posting for a while now to see if anyone has been through something similar in their diagnosis journey or if anyone has any advice/suggestions for next steps. I’m seeing my rheumatologist for the first time next week since sarcoidosis has been a consideration so any recommendations for things to bring up with her are also welcome!

A bit of background, I’m 36F living in Australia. I already deal with chronic illness, I have a couple of diagnoses including dysautonomia/POTS, hEDS, insulin resistance and (fairly mild) psoriasis (amongst other things).

After noticing persistent thrombocytosis in my bloods two years ago, my GP referred me to a haematologist who has ruled out blood cancer and suggested I speak with my rheumatologist about the possibility of another autoimmune condition. Earlier this year, my rheumatologist did testing for ANA, rheumatoid factor plus a bunch of other specific tests for autoimmune conditions and all of that came back negative.

At the end of June this year, I noticed my tattoos were raised, bumpy and very itchy. This was followed by redness, pain and photophobia in my right eye which led to a diagnosis of bilateral anterior uveitis and I was prescribed eyedrops. I was then referred to an ophthalmologist who discussed the possibility of sarcoidosis or tattoo associated uveitis. He sent me for some tests including: ACE, chest x-ray and a couple other blood tests. ACE and chest x-ray came back normal so he diagnosed me with tattoo associated uveitis.

Around this time, my liver enzymes were unusually elevated and I was experiencing shortness of breath. My GP sent me to get an ultrasound done of my liver/abdomen, HRCT of my chest and referred me to a respiratory clinic for lung capacity testing. I also saw my dermatologist who performed a biopsy of one of my tattoos - she also started me on 10mg methotrexate injections.

My liver ultrasound results showed increased echogenicity and they suggested mild fatty liver (GP doesn’t believe this is the correct conclusion though - honestly she gives me the impression she thinks it’s sarcoidosis). My skin biopsy showed non-necrotising granulomas and in results they suggested it’s consistent with a foreign body response. My HRCT was done with contrast and they found swollen lymph nodes in my left armpit (my left arm is heavily tattooed) and evidence of gas trapping/small airways disease in my lungs. Biopsy of my lymph nodes showed the swelling is reactive to the inflammation in my tattoos, ruling out lymphoma, and further scans ruled out breast cancer.

Met with a respiratory specialist who confirmed the small airways disease, however, through conversation he wasn’t able to work out a cause for it. He very much implied that this might be a time will tell situation but has prescribed me an inhaler to use to see if we can improve the inflammation in my lungs.

I’m used to living with an amount of fatigue but it feels like it’s amped up recently. Other than my tattoos still being bumpy, itchy and tender, I’ve also been experiencing shortness of breath, joint pain, night sweats, temperature sensitivity that is worse than usual and I overheat really easily doing very little lately. But the biggest one that I’ve noticed is loss of appetite. I really struggle to eat now because I get so uncomfortably full so quickly, I suspect I’m going to be able to add weight loss to my list of symptoms pretty soon too…

In addition to my regular medications, I’m now on 15mg methotrexate weekly (plus folic acid the day after), prednisolone eyedrops for the uveitis and a beclomethasone inhaler twice daily for the small airways disease. My ophthalmologist has also said if the methotrexate isn’t getting results we want to see, then the next logical step will be to add oral steroids in.

If you made it this far, thank you for reading! Happy to clarify/explain anything further if needed!