Hey guys…. Trying to get my doc to order a pet scan for my sarcoidosis. My pcp believes my pulmonary sarcoidosis has gone to other locations in my body. I don’t have a sarcoidosis specialist - just my rheumatologist who dismisses it, my PCP, and my pulmonologist. I just want to know if it’s everywhere and they are missing it. How can I ask for it assertively and get it done ?

I’m working on getting to a Mayo Clinic for consultation. ( long wait ) The meds my providers pushed for sarcoidosis- I was allergic to, so I need to get screened for MCAS as well. I live in a rural area so providers / specialists are few and far between.

Not exactly sure what I’m asking for, but my husband has sarcoidosis of the lung. It seems to be in “remission” at the moment? For the last 6 months, he’s been trying to be healthier and has lost weight. He’s been pretty consistent about going to the gym when not traveling for work. At the gym, he does almost 100% cardio for about an hour. I know that some forms of exercise can increase cortisol and if that’s the event, could it show itself as a rash in someone with sarcoidosis? If that could be a possibility, then I’m wondering if he should seek another form of exercise?

One week from today, I will have my follow up PET to check to see if any inflammation has come back in my heart after tapering off the prednisone. As I’m getting my stuff all ready to travel, I realize that I don’t even know what to ask if it comes back clear. Obviously if it’s back, it’ll be what meds now. But I have zero idea what I should be asking if it’s all still good. Does anyone have any experience with this or thoughts of what might be good to know next? I guess I’m looking for any advice or any suggestions for questions, if it’s back or if it’s not. I was so caught off guard in February of this year when it showed no active inflammation, the only thing I could think was can I stop the prednisone and when do I have to follow up. I just realized as I was typing this that I got my diagnosis in November of 2020 (on Election Day) and now it’ll be four years later and on Election Day again when I get these results. I’m hoping for a different outcome this time!

Hi all. Bit niche, but my CEA levels jump massively every time I have an uptick in my sarcoid symptoms. While the docs are scheduling me for yet more MRIs to make sure the cancer isn't back, I'm fairly sure I know what's messing with my results, so I tell them. They look at me, go 'mmhmm' and go back to looking for cancer. Does anybody else get this? Is it a thing?

Aberrant Lipid Metabolism in Macrophages Is Associated with Granuloma Formation in Sarcoidosis

https://pubmed.ncbi.nlm.nih.gov/38353578/

It’s happening right now… www.stopsarcoidosis.org

My journey with Sarcoidosis started with a chronic, often gut wrenching cough. The cough seems to have been related to my use of a faulty CPAP respirator made by Phillips. But after biopsy, X-rays,etc. the sarcoidosis showed up in my lungs and lymph nodes. The cough is no longer chronic (the initial one lasted two years) but the sarcoidosis lingers on. Science has not yet given us a cause (etiology?) of sarcoidosis. I’m curious if any of you, fellow sarcoidosis sufferers, have sleep apnea or use some kind of night-time respirator?

I have multiple family members with sarcoidosis and some with Sjogrens (or both conditions). I have had terrible joint pain since age 37 (however no visible swelling), muscle pain, intermittent post exertional malaise, fatigue, dry eyes and mouth, hair loss, migraines... I have also been treated with interferon in the past which is a known trigger for sarcoidosis apparently. I have "cough variant" asthma but I'm wondering if it is really asthma or something else. Has anyone had a similar situation and had success in getting a doctor to order a PET scan?

So had my plethora of x-rays and ultra sounds done last friday. As well as got biopsies on 2 of the lumps on my body one from my arm and one from side. Pathology came back as granulomatous inflammation in both exactly the same. Which matches what they removed from my testicle in July. So they are going to review the July pathology and see if they on that level match with the other 2.

They are are still bringing up sarcodosis but that they are awaiting the blood work results to rule out TB and such like that. So today after work I'm off to have 3 pages of blood work drawn lol.

Original post : https://www.reddit.com/r/sarcoidosis/s/Z6sXEmIPoJ

Hi group, I have sarcoidosis but in remission for several years after a bad flareup. Recently, I have nasal FESS surgery and repair to a deviated septum. My first major surgery. Everything was going fine when I was on steroids. But days after the taper finished, I started getting odd inflammatory complications. They caused a major nosebleed. I am curious if anyone had these surgeries and what their experiences were. Also, if anyone had odd post-op recovery for major surgery due to sarcoid. My doctor seems stumped and I have been formulating thoughts today through research. But would really enjoy personal perspectives or experiences.

I was diagnosed with pulmonary sarc. back in March and had a follow up CT scan last week. I received a brief letter from my pulmonologist regarding the results and will meet in person late November to discuss. In his letter he mentioned that I had calcifications that are possible signs of “burning out” of the disease. What does this mean? I searched it but came up with nothing. Thank you

Severe abdominal pain (upper & lower) from just below sternum, to lowest groin. Severe pain when Peeing.

Deep pain in my sides, feels like my sides are "locking up". Can't stay awake. No appetite from the pain. I'm 125/F, currently on 50 mg prednisone daily and that was after 1000mg fault for 3 days last week.

Anyone ever deal with this after high dose prednisone? I'm actually realizing I can't even hold a conversation as I'm so tired that I can't finish a sentence.

Blood work: high white blood cells Ct scan- nothing new Moving will trigger a horrific flair. Cannot think straight to answer questions.

Has anyone dealt with this?

Hi all, I’m (19F) going through a really weird rough patch in my life health-wise and my rheumatologist has finally landed on sarcoidosis.

My biggest symptom has been the fevers. From 8/15/24 to 9/22/24 I had a fever at least once a day, usually for around two hours. Temps ranged from low 99s to 102s. They would wake me up in the middle of the night and made it impossible to fall back asleep, usually still lingered in the morning, and then would flare up again right before bedtime. Tylenol wouldn’t touch it, so I started taking 600mg Motrin every day—still, the fevers would last at least two-ish hours before slowly coming down. My body does not function well with fevers and I had to drop some college classes and quit my job because I could not work.

Other symptoms included body soreness, especially in joints like knees, wrists, fingers, elbows. Weird and painful popping noises from some joints. Around the beginning of these fevers I also developed some mild nausea and started gagging over a lot of things. Wrong bite into a piece of meat? Gag. Taking out my bite guard in the morning? Gag. Major lack of appetite during this time. On 8/28/24, I started a very loud and persistent cough. I could feel mucus in the back of my throat but it never wanted to come out, which led to more gagging.

On 9/6/24, my left eye got crazy red, sensitive to light, and painful to move around. It switched to my right eye, then both eyes, and is now back in my right eye. For a while, my only symptoms were the eye problems and lots of gross throat-mucus which I have to cough up several times a day. However, three days ago the fevers came back and they are consistent with how they were previously.

I’ve been to my PCP, the ER, a rheumatologist, infectious diseases, and an ophthalmologist. Lots of high inflammation in my blood. All infectious diseases blood tests were negative. I’ve had six blood draws in two months, which is my nightmare (major trypanophobia over here, folks). The ophthalmologist found Mutton-Fat keratic precipitates in my eyes, gave me eye drops, and suggested my rheumatologist look further into sarcoidosis. I’m now learning that there is no specific test for this disease—I just did some more blood work today, another urinalysis, and I’ve made appointments for an echocardiogram, soft tissue ultrasound, and chest CT scan.

I guess what I’m trying to ask is if any of you experienced the fevers this intensely, and if our symptoms are similar. This is my first flare up of any kind and my health has been great up until this point, so I’m feeling pretty scared. My mental health has been majorly suffering, lots of crying fits and breakdowns. All concrete tests have been negative (mono, lyme, sti panel, lupus, rheumatoid arthritis, etc.) but individual inflammatory markers are through the roof.

Any advice, comparisons, comments, ANYTHING would be greatly appreciated. Thank you!

Hello everyone, I am in the process of getting diagnosed and the main contender seems to be sarcoidosis! The rheumatologist I saw recently isn't 100% sold on sarcoidosis because I am white/Native and it has seemingly progressed extremely fast, but pathology and my PCP believe it is. I for sure have granulomas in my right axillary lymphnode that is extremely painful, I have joint muscle and bone pain, night sweats, chills, dry cough, chest pain, light and sound sensitivity, joint stiffness, muscle spasms, a full body rash that comes and goes mainly affecting areas I have tattoos, and a constant headache. Basically I hurt all over and have been taking a ton of otc pain killers and Ketorolac spaced out, but nothing helps. I've had all the labs done for autoimmune disease with them coming back negative. I'm being sent to pulmonary to confirm the diagnosis. The time frame of everything is about 2 months which leads to my question, has anyone with a diagnosis had it progress this fast? Also on my labs my vitamin d level was 13.9 ( highly deficient) is this common in sarcoid? Honestly I don't care whats wrong I just want treatment or relief, because at this point my pain makes me feel like vomiting. If anyone has experienced this or has insight, please let me know! Also I forgot to mention but they have loaded me with corticosteroids, antibiotics, and antihistamines while trying to figure out what is wrong, non of which helped besides knocking me out!

Prednisone was working at 15mg, but tapering caused regression. Started mtx a week ago while continuing 15mg prednisone and some symptoms I hadn't had in a while returned...dry cough, burning eyes, and waking up constantly throughout the night. For now I'm chalking most of it up to dry fall air, but I'm highly suspicious. I'll have bloodwork done in another week, so if it's a bad reaction to mtx I assume they would catch it then, but is it also possible for the mtx to just make sarcoid symptoms worse even while continuing an effective dose of prednisone? I feel like my pulmonary doctors are great with treating the pulmonary aspects of this disease, but are clueless about everything else. Frustrating experience.

Any advice on how to combat the fatigue? After a long day at work, I come home and have no energy to do anything. Even heating up leftovers for dinner is a lot of work. On the weekends it seems I have even less energy because my body is recovering from the week. I will be starting a new job in a few weeks, and I will be working from home. Hoping that helps my pain by not standing all day on my really swollen feet. It just takes so much energy effort to do anything lately.

Stage 4, Pulmonary Sarcoidosis with a lot of scar tissue in the lungs. (56M)

Anybody been on Remicade? I am on my 6th course. What are the side effects? Reduced symptoms?

Hey all. I've (32F) been diagnosed with pulmonary sarc for almost 3 years. The pulmonary symptoms seem to be in remission but I am still dealing with symptoms. I was on 15mg prednisone and 40mg of Hydroxychloroquine per day when my last CT happened and the granulomas were gone.

Since then I have tapered down 1mg per month of prednisone. I am now down to 5mg per day. My joint/foot pain, night sweats and hair loss have all increased dramatically and inflammation markers are still high on blood tests.

I'm wondering if these symptoms are related to sarc or if I have something else. Realistically, if I was in remission there wouldn't be any symptoms - says my pulmonologist.

I am due to taper down again in 2 weeks down to 4mg and I am terrified of my symptoms getting worse. Does anyone here relate?

Hi all,

I’m recently dx with pulmonary, lymph node and skin sarc. My cardiac mri is in Nov because there is a question of whether it’s in my heart but due to the elevated kappa light chains they are also considering amyloidosis.

Has anyone also had elevated Kappa Light Chain tests during or with sarcoidosis? I’m now being told I have a plasma cell disorder and undergoing more testing, including a nuclear bone scan in a few weeks. My insurance denied the pet scan until the bone scan is done.

Thank you!

I just spent 1 week in hospital, but lesions were found on my brain 2 weeks prior to that when i had stroke-like symptoms. I was on 20mg prednisone for 2 weeks (and apparently one mass shrunk slightly in that time) and ended up back in ER with similar symptoms. Several docs were pushing brain biopsy, I didn't want it. One came onto the team and diagnosed Neurosarc, and immediately put me on 1000mg IV for 3 days. They'd done another brain MRI and saw that over the last 2 weeks (since the first ER visit) the largest mass shrunk slightly. So I just left hospital today after the 3 days of 1000 mg (couldn't take it anymore and asked them to release me as I felt 3 days was enough.) I'm seeing a Doctor of Excellence in 2 weeks and will be on the ween dose now (60 mg/5 days, 50 mg/5 days, 40 mg/5 days, etc) and that will hold me over until I see the expert.

I'm going to wait on the expert to look at my MRI as the hospital I was in was admittedly NOT familiar with NS. I feel fortunate that at least one mass shrunk slightly but an incident of numbness in face and hand made me panic and head to the ER for the second time. That's when the second MRI of the brain was done to reveal the original mass shrunk. But doctors were pushing me hard to biopsy the brain and I've what read that this is a last resort. My lung biopsy was already done last year to reveal PulmSarc. I guess we'll see what the expert says and hopefully I'm not misdiagnosed. But I would think if it's cancer, it wouldn't have shrunk over 2 weeks on just 20mg/day.

Question: What should I expect jumping from 1000mg IV steroids for 3 days, and moving to 60mg today? Did anyone get hit hard after such high dose in hospital? Any symptoms anyone here experienced coming off such a high dose? If so, any suggestions? With a lot of doctors unfamiliar, I'm pretty much on my own. But at least I'm geared up with steroids to last me a couple more weeks.

hi everyone! I joined recently because I had a bunch of granulomas appear in my tattoos. old ones, newer ones, all in my black lines. my doctor initially said it was allergies and gave me a topical steroid which made the lumps grow to epic sizes. they just keep spreading. I was sent to a dermatologist and had a biopsy, results came back confirming granulatamous inflammation and today I had blood tests and a chest x ray to “rule out” sarcoidosis. my question to you all is if it’s not sarc, what on earth else could it be? I imagine you all had similar experiences being diagnosed, so I’m curious what else it was treated as, or thought of as being, before reaching your eventual diagnosis. I’ve been on a bunch of immune system boosters from a naturopath and all they’ve really done is increase my libido, disturb my sleep schedule and leave a sour taste in my mouth

It may be a stupid question as I know that smoking anything is less than optimal for your lungs and the obvious answer is to not smoke at all but is there anybody here with pulmonary sarc that smokes cannabis? Does smoking cannabis have a direct affect on sarcoidosis or does it just put you a greater risk of acquiring other illnesses because of sarc?

FWIW I rarely smoke weed (around once bi-weekly) and don’t smoke cigarettes or anything else at all. I also don’t drink. I’ve tried edibles but it’s just not the same at all.

Google hasn’t been giving me the direct answers I’m looking for, perhaps the answer I’m seeking isn’t yet known, I guess I’m just wondering if there’s anyone here with pulmonary sarc who smokes weed and what their experience is like.

So just trying to understand what's going on with me. I just had a rheumatologist appointment last week and sarcodosis is on the list of what she is looking at

I'm a 44 year old male and have been working in rubber and silicone manufacturing inflatable seals and gaskets and onrings for 8 years.

Back in July I had surgery to remove a almost 1 inch growth from my right testicle. They originally thought it was a benign tumor thing. The doctor said it was quite uncommon that it was attached to the testicle not what he originally thought. Pathology came back and said it was not cancer ( yay) but granulomatous inflammation. He had asked me if I had any other issues. I explained I've had been dealing with iritis since 2021. ( I haven't had a flare up this year yet). So this is where we got to the rheumatologist. During the appointment she checked a lot of things and medical records. I also spoke to her about being HLA-B27 positive and also having these red lumps on my arms and back, as well as my regular chest pain and having supraventricular tachycardia ( being treated for). She is sending me for a huge huge list of blood work, chest, back, pelvis, sacroiliac X-rays, and a derm to look at the lumps on my body.

Now after reading some of the posts on the subreddit I am starting to think this might be the diagnosis.
So just looking for some ideas of what this is.

I do need to tell her about the lumps in my tattoos as well. Which the tattoos are like 20+ years old. The lumps are like only this year.

A bit of background:

20M

I've had random health issues since early teen with joint discomfort and fatigue particularly in legs at 12/13, most of it calmed down on it's own and wasn't overly significant.

Then around 18 I started to have constant tinnitus, headaches, and random small medical issues. When I was 19 I got a concussion that never really healed (maybe because a concussion is inflammation of the brain and autoimmune issues aren't a fan of reducing inflammation) and I haven't been able to workout or do my normal activities without symptoms getting worse. At this point I had a continuous headache daily, coughing phlegm often, feeling unwell constantly, swollen lymph nodes in face/collarbone/neck/chin area, etc.

Countless medical appointments with the doctors telling me to essentially stop contacting them because they couldn't see anything wrong and said it was all in my head and health anxiety. Testing included 3 ultrasounds of lymph nodes (active with increased hilar vascularity but blamed on viral illness), 2 CT scans of head (nothing significant), a few chest x-rays (normal), 1 Brain MRI (normal), many blood tests that came back normal every time, urinalysis, probably some other small ones I'm forgetting too.

It was until I started having constant significant strings of floaters were in my eyes that weren't going away I went to an optician and they directed me to A&E who saw I had extreme inflammation in the back of my eyes and had scarring in my eyes because of Autoimmune Uveitis. When they used the blue dye thing the doctor referred to one eye and "bad" and the other as "really bad" lmao. Permanent glaucoma but I'm not too fussed about a few scars in my eyes (if people can live with hair covering their eyes I can live with this haha).

I was put on 40mg Prednisolone for a week and now on the second week I'm down to 30mg.

A few lymph nodes feel like they've reduced in size and I'm coughing up phlegm less, but I'm also eating a completely non-ultra processed and anti-inflammatory diet which could be helping.

I'm now back home from university to be nearer to my health care providers and just feeling unwell and stuck. I have a high resolution chest CT that my doctors said we could change to an MRI since I've had multiple CT scans within the last year and the radiation dose is obviously not very good if you're young due to cell repair and DNA damage.

Questions:

I'm wondering whether anyone else got an MRI instead of a Chest CT? I've had 2 doctors tell me they can check for sarcoidosis in the lungs without the additional radiation equivalent of 70,000 cigarettes in a few seconds which I'd prefer if it can be avoided lol

Also, are headaches a common symptoms with sarcoidosis? I've constantly got one and it takes quite a bit of fun out of life to live with them but maybe it's post concussion syndrome related? It got worse as I was losing muscle mass so I'm also thinking it could be posture related or something, but I'm uncertain.

Sorry if this post is formatted weirdly, adhd, dyslexia, and feeling unwell make an evil team when it comes to writing like a normal human.

Any information would be great.

Edit: I've spoken with a radiologist and done some research and a HRCT (High Resolution CT) is much less radiation than a normal CT scan. Like 6.5X less which is great. Maybe see if this is an option for those who are getting frequent scans to monitor their condition.

Hi. I have lung sarcoidosis. I get out of breath when e.g. I climb stairs. What I noticed is that my it varies from day to day how fast I get out of breath. Today is quite good actually. Do you experience day to day variations as well?