r/sarcoidosis

Hey everyone, im 27yo M. Just have been diagnosed with sarcoidosis in my lungs. Only very minor at this stage and have caught fairly early on. My only symptoms at the moment is a tight muscular feeling right in the centre of my chest that has been going on for a few months now. It all feels very connected to my upper body muscles, stretching my shoulders back feels like a fairly intense pulling sensation in the centre of my chest. Ive been reading a few forums about this random disease that no one seems to know anything about, a lot of them aren’t particularly the most reassuring stories. Apparently most people who have this disease it just goes away on its own and never really comes back and causes any issues, im wondering if anyone people has had sarc and had it go away on its own. Looking for some more enlightening stories i guess. I eat well and gym/exercise regularly. Just really concerned this will affect my life.

18 diagnosed in pediatric with sarcoidosis. How do you guys manage your stress levels? At my age I’m prone to stressing out about everything work college my social life etc etc and I know it’ll only get worse as grow older. I know stress isn’t good for me cause it gives me flares and I was so exhausted I barely was in the mindset to even take my humira but I figured I wasn’t gonna not take it and be even more miserable and pulled through, but this still isn’t where I wanna be rn so any advice would be extremely helpful

Could it be a symptom of my sarcoidosis? I thought it was just a summer cold but now I’m not sure. I had some phlegm. I called my doctor and he prescribed antibiotics but it doesn’t seem to be helping. Should I contact my pulmonologist? Thanks!

hi diagnosed with sarcoidosis a few months ago, they randomly found something in my lung on an xray when I had to get my appendix out. Have lesions in my pelvis as well, which causes considerable pai n due to nerve involvement. but have started getting pain in my ankle as well, but have been offered no treatment at all. how did you get treatment, and which specialist gave it, know nothing about this the resp consultant made it sound like no big deal. the gp wants to send me to rheumatology. thanks for any advice

Hi! i got diagnosed three years ago, It all started with heavy breathing and extreme fatigue after one week of skiing in the alps. My doctor thought it could be Lyme-diseas from a tick and i got tested up and down for this. then after about a month i suddenly got uveitis on both of my eyes.

thats when the ball started rolling and the eye-doctor sent me for chest xrays etc and they found out that both my lungs where affected. Then got the scariest letter ever in the mail where it sugested this could be cancer so they had to do this Endobronchial ultrasound-guided biopsy thing.

Fortunatly the results where not cancer but sarcoidosis...

It all went well after this first round with just regular check ups and chest x-rays etc...

But now things is happening again and my doctors doesnt seem to take things to serious wich i belive is quite concerning. So now i got a flare up in the eye wich is under controll and in remission. i was due for yearly chest xray checkup i april/may but because of long waiting lists i still havent got the check up. Now the part that concerns me the most is that i recently have had a "high" ( in my opinion) number of palpitations from the heart. it comes while im resting, while im doing physical stuff, out of the blue and feels weird. so now im worried the heart is also afected of this shit illness...

TLDR: what symptoms did your heart sarcoidosis start with?

Sorry for some bad grammar as english isn`t my first language.

My throat constantly feels like I’m on the verge of getting sick. It feels like it gets raw. I don’t believe I have swollen lymph nodes in my neck tho. But I do tend to get pleurisy on my right side in the same spot (just below my rib cage). I get this sharp stabbing pain probably every 2-3 months for a couple weeks. Anyone else get this? I’ve only been diagnosed with skin sarc

Have any of you experienced hepatic involvement with sarcoidosis? How did you discover this and how did it show up on imaging/blood work?

A liver ultrasound a couple years ago showed fatty liver but after receiving a sarcoidosis diagnosis I’m wondering if it’s sarcoidosis and not fatty liver. Blood work shows elevated AST, ALT, ALP, GGT. Has anyone had similar results? I’m quite concerned and would really appreciate any information regarding sarcoidosis and the liver. Thank you!

I’m still being tested for neuro sarcoidosis, but I have a question — has anyone had diminished feeling/loss of sensation? I have it from about my chest down. I can’t feel my left, my genitalia (sex sucks now), and anything on my torso. It keeps getting worse. I’ve now lost a lot of sensation in my arms. I can walk and move, but it’s just…weird.

Hi there! I’m going through a million hoops, but how did sarcoidosis come up in your bloodwork or labs? I’ve been diagnosed with myelitis but they’re walking it back and think I may have neurosarcoidosis (nothing is improving). Thanks!

UPDATE

we reached out to his group that handled his prostate cancer

We sent a note about the symptoms and even with proton therapy for 23 weeks there wasn’t the severe fatigue. There were no memory issues and there were no changes in this personality. The cancer group sent a note and I don’t know what was in it, but it looks like we are scheduled for an MRI of the brain and spinal column now by yhe pulmonologist. Yes our PCP was not there for us see notes down below so we went back. he was through with the cancer people five years ago, but med people who know you dramatically such as with cancer and know your situation you can reach out to them. I don’t know what’s happening with our PCP because he abandoned me on a B12 deficiency problem parentheses I had to go to a clinic by Zoom in Florida for my weight loss journey to get the shots and people be careful out there. SARC is associated with B12 deficiency). and he just is not checking in or answering any of our questions about what’s going on. he obviously doesn’t want to be part of the team SARC AGAIN THANK YOU TO EVERYBODY THAT REASSURED ME AND ON THIS!!!

here for my hubby. He was a healthy 770 year old. But drastic change in last two weeks. not seeing new rheumatologist till August. so sent note to pulmonologist that there is severe fatigue. personality changes. memory loss. doing cardiac monitoring now. mRI of heart in August too. no heart issues. I get that they out stuff but? and biopsy after PET diagnosed sarc in lung lymph node. no signs of breathing difficulties. nervous about it. wanted to start neuro check. but only got a home sleep test From pulm. And he sleeps like a baby. He takes harder face plant naps than me. he is doing more healthier diet since I have MCAS. CFS. POTS. and got him on men’s gen vitamin with pure encapsulation with their AI anti inflammatory and GI tract pills too. more rest. more water. has skin signs on nose and cheeks. using Manuka honey on it with success. Want to go to rheum seem clinic soon. But need referral. We scared that we are not on any meds for this huge change and being put off on possible neuro damage. we thought there could be mris of brain spinal plus tap maybe and possibly brain biopsy. Sooner in works. had in eye for year in retinal bed. two injections after two steroid runs did not work so biologic in the needle finally got that down. waiting and wondering. pure hell. Why??? waiting while you’re wondering even a month two months three months or more because you have to get an OK from the insurance company for anything like a biologic. Systemic one. Crazy knowing that there could be damage right now.

Hey All,

A few months back I posted this about having been initially diagnosed with Lymphoma and secondary bone cancer... Yay, final results ... it is Sarcoidosis. Not great but 100% better than the Big C.

My flair up (my first) had subsided since all the fun a few months ago and they could not find anything to conclusively biopsy...... except, my spine.

A spinal biopsy is without doubt the worst procedure I have ever had.Yes you are numbed up but you can feel the hammer and needle reverb up and down your spine and hear the hammer taps. and then screwing in the access port to use the needle thing.......

I had to have it twice because the surgeon screwed up and didn't use the extraction tool properly to get a sample. He tried twice. These needle/chisel things are single use and hundreds of pounds each. I was so angry, I made them put me under for the second one because I just couldn't cope with that again. It was much better. They should have done that the first time round but you know, cost 🤔

Anyway, the good news is that my bone lesions have shrunk from 5 cm to 1 cm and I have now have an official diagnosis. Because mine is not "major" so to speak they are going to treat it at the local hospital.

Its weird knowing that you got a diagnosis that whilst crap could have been a whole world of worse!

Only downside is I got "RIF'd" as the Americans call it this week but IDGAF because there are so many more important things to worry about! It's given me chance to take a shot at my own business that I would never have done before.

And... if you have a spinal biopsy, don't let them cheap out. Having it done with general anestesia is totally the right call. Stuff them moaning about cost!

Due to complex medical history they’re leaning towards CellCept to treat my sarcoidosis systemically. Can anyone share their experience on this? My biggest concerns are behavioral changes and weight gain. Thanks in advance 💗

I see so many posts here about prednisone and methotrexate with various levels of success. I have been dealing with lung sarc for 15 years. I have only ever taken prednisone for flare ups, like if I get a cold or other respiratory illness. I have never tried methotrexate. Mostly, I think those drugs end up causing other problems. I have, to various levels of success, tried to control it by eating better. It does take discipline but your quality of life is worth it. Recently, within the past year I have been fasting. I have done one meal a day and more extended fasts. Honestly if you break your fast the right way, I believe this is the best way to improve your situation. I’m not an expert but there are countless resources and information on fasting for healing your body. It does work but it also takes some serious commitment. I highly recommend looking into it and trying it if you have not. Your body has an amazing ability to heal itself if you have the determination. Sarcoidosis is inflammation and fasting reduces inflammation like no drugs. The key is ensuring that you don’t fall back into the same eating habits and commit to a somewhat regular fasting schedule. If you’re able to start with maybe a 24-48 hour fast and work your way up to more prolonged fasting, I think you can put your sarc into remission. Of course I am not a doctor and you should consult yours before starting. Do your research though.

Bonjour,

Je me sens triste.
Ma mère a été diagnostiquée d’une sarccoidose en 2016, il y a 10 ans. Dans ce cadre là, elle est suivie annuellement et au début du mois de juin, pendant sa consultation annuelle, les médecins se sont aperçus qu’elle avait un épanchement pleural, c’est à dire du liquide autour du poumon gauche.
A la suite de cela, s’en est suivi plusieurs examens qui ont révélé que le liquide n’était pas suspect, mais que les marqueurs de la sarcoidose sont bien présents dans la prise de sang. Elle a fait un scanner, irm, tep scan, endoscopie et elle a des nodules au niveau de la plèvre. Une biopsie est programmée pour dans 2 jours afin d’exclure le cancer et savoir s’il s’agit de la sarcoidose ou d’une infection / inflammation.
J’ai si peur que ce soit un cancer. Aidez moi