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.
Im starting methotrexate , im on 5mg of predisone , im scared any advice please
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
65 year old male. Diagnosed late last year. I've had it for at least two years before that.
Involvement with right eye, biopsy of mass there diagnosed sarco. I also have deep in my lungs, possible cardiac, still waiting on that, and it seems to be attacking my joints also.
I did a prednisone surge, starting with 30 mg, and started methotrexate. Now down to 2.5 mg of prednisone with only a week left before we cut it off. Currently taking 15 mg of methotrexate. 7.5 mg every Tuesday morning, and 7.5 mg every Tuesday night.
I also have a failed back. Going on 14 years dealing with that joy.
This sarcoidosis in my lungs is driving me nuts with the coughing, which aggravates my back, which causes me to start shallow breathing, which leads to more coughing. It's a very vicious circle.
Sadly I take way too many pills everyday dealing with health problems, chronic pain, and the depression that goes hand in hand with the chronic pain.
It will be nice to have people to talk to who understand my problems.
Thanks!
my dad was just diagnosed with sarcoidosis after a biopsy
The ER doctor came into his room after his CT scan and said oh are you a heavy smoker?yes? No wonder you have lung cancer and we also see you had a stroke.
apparently the head CT showed a part of his upper chest, and they saw enlarged lymph nodes on his lungs
that was an awful 7 days of waiting after the biopsy for the results.
Pulmonary doctors were thinking lymphoma, but thankfully It is Not cancer
We have started high dose, and we will taper down every four weeks and hopefully go non-steroidal route
can anyone tell me what we can expect to come?
everyone seems to have different experiences with it
It's been a six year battle, all my organs have been attacked lungs heart I'm in diastolic failure at 41 bedbound. There's times when I cannot see peoples faces I can't balance can't walk… My eyes burn like fire sometimes I can't lift up my arms or my legs my fingers get stuck in place. Sometimes my fingers will lift up by themselves… The emergency room knows me well and I think the consensus is I'm crazy… Even though I have plenty of diagnoses, there was just so much that was unexplained… Now, if I do have this, it will begin to make sense. I'm in bad shape right now, my diastolic is at 1:25, was diagnosed with diastolic heart failure, diastolic dysfunction. I heard all over no strength to lift up my arm to just reach for my medicine right now too much pain. Does this sound like neurosarcoidosis? My previous neurologist went for a clinical diagnosis of Neuro Sjogren's as my eyes burn like fire zero on the Schremmer's test and rheumatologist says mix connective tissue disease… All over the place, but so far this very high protein, brain damage and high serum ace one seem to show neurosarc is what it is. Also my Igg levels have been dropping like crazy, has me worried… My face has been blowing up. I don't know if that's because of my heart or what because it doesn't seem to be salt related… I wheeze on exhale and they've already said it's not pulmonary. Sometimes it feels like my breathing is gonna totally cease… My breathing, especially during sleeping is very weak, I've had several ER doctors say that I hyperventilate. Any direction help would be utmost appreciated my life singing by a thread right now.
Hello and good day to everyone. I wanted to share my journey as I am coming up on a year now. Last may 2025 I went to the ER for extremely high BP. I tried to make a Dr Appt first but when I told the nurse my BP was sitting at 205/115 she told me I needed to go to the ER and they wouldn’t see me until I do. While at the ER I was having some chest pain which sparked a series of tests where they fold many lymph nodes in my neck am chest that were enlarged. A few were over 5.5cm. At this point I was told I most likely have lymphoma and I was going to need further testing and biopsies. They took a biopsy from my supraclavicular node on the left side and then I waited for results. Of course at this point my mind is extremely focused on having cancer and worrying about if I might die or what life will look like moving forward. After about a week my test results came back showing necrotizing Granulomas and no malignancy. Extremely relieved and confused I was told I could have sarcoidosis but this is extremely rare given the fact I have necrotizing Granulomas. The following month June 2025 I get more tests and a PET scan which shows SUVs ranging from 16 to 26.5. The only things lighting up on the pet scan are the lymph nodes in my chest, neck, and one in the upper abdomen. They then perform an EBUS which show necrotizing Granulomas in my chest nodes. Since then I have had many tests from CT scans to cardiac MRIs and multiple heart monitoring tests. I am scheduled for another PET (cardiac focused) on May 4th of this year. The reason I am getting so many heart tests is bc they found a scar on the bottom of my heart that has healed and they don’t know if it’s from myocarditis or cardiac sarcoidosis. The location is typical for myocarditis and all of my prior tests have come back with good news. I am told this PET will be the last test for a while but my case is a weird one as I have Sarcoidosis with a necrotizing variant and my SUVs were quite high. I am hoping for good results and will keep everyone posted! I have read so many of your stories I thought it was time to post myself. Good luck to everyone and if you have questions please feel free to ask. I tried to keep it short!
I generally don't seem to have any symptoms apart from shortness of breath, except when I do a lot of exercise.
I can exercise intensely up to my lower lung ceiling, but what's far worse is the next day if I exercised for a long period, even if not intense.
I played 18 holes of golf yesterday and this morning I felt like I'd been hit by a ton of bricks. I've been here before but this was as bad as ever. It seems as though more than the lung shortcomings are a great incapacity to do considerable labour without paying a huge cost later. It was THE one thing that changed more than anything.