r/sarcoidosis

I'm new to this sub though I've had Sarcoidosis for over a decade. It mostly manifested on my legs and in my eyes, though several years ago several brain lesions were discovered. I managed to come off of all medications for years and was asymptomatic. I stopped going to my neurologists because I have so many other health issues that required appointments and attention.

I have been dealing with mental health issues since childhood- treatment resistant depression and anxiety, chronic suicidality, and borderline personality. I recently had a consultation with a therapist who suggested i get an mri again to see if something organic could be causing some of my mental health struggles which have been much worse recently. My primary doc ordered and got the results which showed changes in MRI that could be sarcoid related, so I have an appointment with one of my old neurologists. I'm not sure he'll be able to discern whether these lesions could be responsible for the worsening behavioral ​/personality problems i already have.

Has anyone else had a doctor be able to connect what's going on in brain scans with personality/behavioral issues? I want so desperately for it to be something physical like the lesions causing it instead of just me being a horrible, mentally ill disaster of a human.

Thanks for reading if you did and for any help.

I'm taking 20 mg of methotrexate a week and it's kicking my ass.

I take it on Tuesday. Come Wednesday and Thursday I'm beat, I feel like I was rode hard and put away wet. Nauseous, hurt all over, and generally feel like shit. Friday and Saturday can go either way. Sunday and Monday are about the only two days of the week where I feel "normal".

Most of my sarcoidosis is in my chest. Lower lungs with scarring and ground glass and enlarged lymph nodes.

I just got the results of my echocardiogram and thankfully my heart is normal.

I have a lot of coughing at night. I'm already dealing with a failed back and have been for a long time. Coughing is really tough on the back.

I'm really hoping that my body will adapt to the methotrexate and I'll start feeling better. I know I'm in for the long haul with this bitch but right now it seems that the "cure" is worse than the disease.

Please share with us ur positive stories of sarcodosis , anything u can think about a good mindset can help us overcome the disease

What's the typical Ace elevation seen with Sarcoidosis?

I got a blood test that had an Ace of 104 (Reference range stated 15-85). I've had terrible night back pain that gets so bad that I can't sleep, so the doctor ran a bunch of tests and this is the only one out of the norm. Recently, about 3 weeks ago my feet started feeling super painful, going cold, freezing cold. Now my left foot continually hurts too. I had a vascular surgeon look at it and he thinks it's small fiber neuropathy so I'm off to a neurologist next. I'm 40, have always been very healthy, don't have diabetes or any physical issues.

Any tips or insight on exploring things would be greatly appreciated.

Not much more than the title. My ACE was 91 so I was sent for a hrct. I also have some borderline myositis blood work results so that will also be discussed. I guess I’m just nervous and curious what lies next. I’ll update when I have some information. Thanks for reading.

• Lymph Nodes & Lungs: This is the most significant finding. Both the CT Abdomen and CT Chest showed enlarged lymph nodes in your chest and around your aorta (the main artery in your belly).
• Lung Nodule: A 14–15mm "spiculated" (irregularly shaped) spot was found in your right lung.

Also low white cell count, lymphocytes, and neutrophils just as an FYI. Was found by accident and without symptoms. I’ve had an enlarged spleen and fatty liver diagnosed in late Feb due to severe alcoholic pancreatitis.

I know that I won’t know until a biopsy but my god my mind is racing and I’m sick of sitting on Google.

Hello,

I’m a a 31yo female that was diagnosed when I was 18. I’ve never gone into remission. I’ve tried methotrexate, (made my hair fall out & skin hurt- discontinued), cellcept (wasn’t viable for family planning), imuran, humira, remicaid, prednisone, xeljanz… I’m not sure if I’ve hopped around too much or if my lifestyle choices in combination with the medications nullified the benefits. I’m currently tapering down on prednisone, I’m down to 14mg, tapering in 1mg increments. Very slow and irritating process. I’m currently prescribed xeljanz, and plaquenil. I would like to be on a medication that would potentially allow me to finish my family planning. I have 2 kids, a 10 year old and a 3 year old. I would like one more child. I would like to get my inflammation and health under control first, not sure if this is possible with lifestyle/diet changes alone? Or with plaquenil/imuran, something like that. I have no lung involvement, and am currently being tested for heart involvement. I currently have 12mm kidney stones in both kidneys and have shock treatments scheduled. My kidney function is currently not great, I’m looking for ways to support my liver, kidney and heart health. Most of my disease has been located in my left thigh, granulomas that cause my left leg to swell & has been growing since I was 18. The only thing that has really gotten this swelling down is very high doses of prednisone, but the effects of all these meds really do me in.

TLDR;

•I’ve never spoken to anyone who has sarcoidosis like me. What has your experience been w/ living with this disease? How do you manage it? Have you ever been in remission? How?

•I’m in Michigan, is there anyone here that has any experience with good doctors/resources?

•What medications worked best for you? What lifestyle/diet?

I feel very alone in this all the time, and I’d love to talk to others like me. As you all probably have experienced, this disease takes lots of personal research and study- I often feel like I’m drowning trying to be my own doctor without the credentials or ability. My 20’s were a struggle and I’d really like to get my sh*t together in my 30’s so I can live a good life for my kids.

Thanks for reading. 💜

I started at 60mg and tapered down to 5mg , its been a fight for me to get doctor to lower the dose i did many scans and tests that shows that inflammation is gone from my body , yet they still keeping me longer ,im so afraid of going back to it some day that i cant sleep thinking about it

Hello. I was diagnosed with Necrotizing Sarcoidosis in August of 2023. I'm hoping to find someone (ANYONE) that shares the diagnosis.

My pulmonologist is amazing, but because NSG is so rare, I would like to find someone to compare notes with about treatment.

I'm in a few FB sarcoid groups, but I can't get any of them to let me post. I've tried several times, but nothing I submit is ever accepted.

Thank you in advance!

Update: CT clear. Feels shitty to cry because my lungs are fine, but the tears keep coming

The chest xray showed “possible lymphadenopathy” in the upper hilar region. I was only given the work up that included the xray because I was told my rheumatology clinic doesn’t allow provider switches or second opinions in house, and I would receive an outside referral if I wished after seeing my rheumatologist’s PA.

I presented her with the objective symptoms/findings list my rheum said “no thanks I don’t need it” when I had tried to make a case for testing beyond standard IF/ANA labs and a lazy fibro dx he slapped on my chart 10 minutes into meeting me. I asked her given the documented optic nerve sheathe enlargement, inflammatory-presenting symptoms, and “one off” labs that were telling a story as a whole but not as singles, along with some other solid points - wouldn’t it be within the realm of reasonable to consider seronegative or systemic processes? She did the labs, and the xray. Despite a bunch resulting abnormal, I was told “labs aren’t raising concern” a few times, even after asking for clarification (because I’m not a doctor???) just so I could try to understand better. Then a call that “concerning structures” warranted a CT.

Sarcoidosis (neuro) has been on my radar for months. Tomorrow they’re checking specifically for lupus, sarcoidosis, or lymphoma. It feels garbage that I find myself hoping the xray isn’t another “unremarkable” imaging like all the MRIs and CTs this last year, because if it’s normal… I don’t really have a path forward, unless a neuro ophthalmologist gets real in depth next month. I’m not hopeful. I live in a rheumatology desert. There’s 1 clinic (mine), 1 single rheumatologist at another hospital in my city, and the university hospital - who declined the referral last week that my pcp placed for a second opinion. Local neurologist i fought to see for 9 months gave me about 9 minutes … and pushed everything off to the university hospital’s neuro opth instead of just like… doing an LP? Or seeing more than “numb hands and an EMG printout” that diagnosed bilateral carpal tunnel. Probably not mechanical since the injections didn’t help in my wrists, shoulder, or cervical spine epidural that probably kicked off the ICP symptoms..

Frustrated. Burnt out. Hoping for lupus, I guess.

Hi, I write this to seek an advice from ppl who share the same issue than me. I have cardiac sarcoidosis and was diagnosed via PET-CT a few years ago because of a 3rd degree heart block. It showed granulomas and inflammation in the middle of my heart. First I was on prednisolone 40 mg and the 3rd degree heart block disappeared. My prednisolone was gradually reduced. At the beginning there was no SVTs / VTs and I didnt noticed my heart beating. When I was at 25 to 20 Mg prednisolone I startet to feel my heart more and some palpitations / heartbeat. It turned out that I have 2500 VT / day. I dont know if they were before and I didnt noticed, or though prednisolone reducing. I managed to live with it and it was ok for me. Sometimes they are, sometimes they disappear. When I got to 5 mg the 3rd degree heart block came back and I got another PET-CT. It showed, that I have inflammation in the middle of my heart and added to this - in the tip of my heart now plus in bones. So the prednisolone was increased again and the 3rd degree heart block disappeared again. But then I noticed very unpleasant palpitations and it turned out that this are SVTs - 2500 / day. Now I am reducing prednisolone again and started methrotrexate.

I am feeling like, the more I reduce the prednisolone, the worse and more my VTs / SVTs get. Did someone had this too? I cant judge, if its the inflammations coming back, or its maybe the scarring in my heart that causes this, because it works? And I guess the methotrexate isnt working, it feels like, but I cant say. I had no other PET-CT yet. It feels like the line is at under 20mg prednisolone where it starts to feel unpleasant and the VT / SVT starts. Methotrexate changed nothing. I must say that I had never experienced any adverse side effects of prendnisolone or methotrexatre. I am a bit unsure about my situation because my quality of life is slowly getting worse and I get more and more symptoms and it feels like the sarcoisosis is slowly approaching. Is it possible, that methotrexate isnt working on my cardiac sarcoidosis? I think I will know, if the 3rd degree heart block comes back. Thx for you answers and big regards on all who fight against this desease.

I started methotrexate a week ago its going well so far , and taper down my prednisone to 2.5 mg i also take flic acide , i slept with the window open and started coughing and bit and i immediately freaked out thinking that the sarc on my lungs got worst , how do u deal with this anxiety

I am prepared for the worst (recurrence/chemo) but slightly hopeful that there is another explanation for my crazy CA125 spike. Either way, my PET CT is next Wed (5/13).

In 12/25 I was diagnosed with sarcoidosis after two CT scans revealed lymph nodes in my chest, and biopsies determined they were benign sarcoid granulomas. I had a follow up PET Ct in February that was clear.

In addition to sarcoidosis, which can mimic cancer cells and falsely elevate CA125, I have a huge ventral hernia (surgery scheduled for 20 July), gastritis, IBS, had a two-part bilateral mastectomy (Dec and Mar 2026) and was overseas for 9 days three days prior to my bloodwork.

My onc is out of town but my PA said that she has seen crazy CA125 spikes and clear PETs. Am I wrong to be a little hopeful? (For context, been NED since 1/23, and first diagnosed with OC in 8/22)