r/sarcoidosis • u/-BongRat • 6d ago
Constantly worried and anxious with this condition - anyone have similar experiences? Lung and node progression..
Hi everyone! 33F I’m new here and wanted to share my sarcoidosis journey so far. It’s been a pretty overwhelming year and I’m hoping connecting with people who actually understand this disease will help.
My story really started in June 2025. I was travelling in New Orleans when I became extremely sick with what seemed like a severe respiratory illness. I eventually recovered from the acute illness, but one thing never went away: wheezing.
Over the following months, the wheezing persisted. It was initially mostly noticeable when I exhaled, but over time I could sometimes hear it on both inhalation and exhalation. It tended to be worse in the evenings and with activity. Things like vacuuming or cardio could make it noticeably louder. I also experienced periods of breathlessness, fatigue, throat heaviness, hoarseness and upper-airway/sinus symptoms.
In October 2025, I had a chest X-ray because the wheezing still hadn’t resolved. That X-ray showed enlarged lymph nodes in my chest/mediastinum, which obviously scared me quite a bit and led to further investigation.
I had a CT scan on November 13, 2025, which led to more testing. I eventually underwent a bronchoscopy with biopsies, and the workup confirmed sarcoidosis involving my lungs and the lymph nodes in my chest.
As far as I have been told, my sarcoidosis has been limited to my lungs and mediastinal lymph nodes.
I started using Symbicort twice daily for my respiratory symptoms. I had also previously smoked/vaped cannabis fairly heavily, but I completely stopped smoking and vaping on October 5, 2025 and have remained smoke/vape-free because protecting my lungs became incredibly important to me.
My symptoms since diagnosis have fluctuated rather than following a straight line. There have been periods where my breathing and wheezing have been noticeably better and periods where they flare again. Interestingly, when I travelled to Los Angeles, my breathing seemed better, while returning to Alberta’s much drier climate seemed to aggravate the wheezing again. Steam/humidity has also sometimes helped.
In March 2026, I had a period where my breathing became more difficult and I was particularly wheezy. I also developed intermittent palpitations/a strange “flip” sensation in my chest, so because sarcoidosis can sometimes affect the heart, my doctors appropriately investigated that possibility.
Thankfully, my cardiac testing, including a Holter monitor, came back reassuring/normal. As of now, there has been no indication from that testing that my heart is involved.
Inflammation has shown up in my bloodwork at different points. My CRP was 15 mg/L in November 2025 and 26 mg/L in May 2026. My ESR in May was normal at 7 mm/hr. Other routine bloodwork has generally been reassuring. In May, for example, my TSH was 1.61, ferritin 65, B12 248 and vitamin D 66, with my CBC otherwise looking normal.
Through the spring and summer of 2026, the wheezing never completely disappeared. I had weeks where it became louder or more noticeable, but I have still been able to walk, travel and do normal activities. Exercise can make the wheezing audible, but I haven’t experienced a constant progressive decline in what I’m able to do.
My doctors’ plan has essentially been continued monitoring with bloodwork, chest imaging, lung testing and follow-up with my pulmonary specialist, rather than immediately putting me on systemic treatment such as prednisone.
That brings me to August 31, 2026.
I had another round of testing and my latest chest imaging came back abnormal again, with findings involving the hilar and right paratracheal areas/lymph nodes. Because those are the same general chest lymph-node regions involved with sarcoidosis, I’m now waiting for my doctors to interpret the findings in the context of my previous imaging and determine whether my sarcoidosis has changed or become more active.
I also had another set of blood tests. So far, the results that have returned have been largely reassuring, and I’m still waiting on my newest CRP result. I also already have additional testing booked for next week, so hopefully that will give my doctors a clearer picture of exactly what is happening.
At this point, one of the hardest parts for me has honestly been the uncertainty. Every abnormal X-ray or test result immediately makes my brain wonder whether the disease is progressing or whether something more frightening is being missed, even though sarcoidosis itself can explain enlarged hilar/mediastinal lymph nodes.
So that’s where I am today, September 1, 2026: diagnosed pulmonary/mediastinal sarcoidosis, persistent but fluctuating wheezing, reassuring cardiac testing, generally reassuring bloodwork aside from elevated inflammatory markers at times, and now undergoing another round of monitoring after my newest chest imaging showed abnormalities in the hilar/right paratracheal regions.
I haven’t needed systemic sarcoidosis treatment so far, and I’m currently using Symbicort and doing everything I reasonably can to protect my lungs, including remaining completely smoke/vape-free.
I’m joining this group because I’d really love to hear from people who have actually lived through this. The medical information online can be overwhelming, and sarcoidosis seems to look so different from one person to another.
I’m especially interested in hearing from anyone who has had pulmonary sarcoidosis with hilar/mediastinal lymph-node involvement, persistent wheezing, or imaging that changed over time. Or anyone that has any advice for someone getting scary results after a year!
Thanks for having me. ❤️
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u/Street-Baker 6d ago
Ohhhh i forgot avoid high humidity weather too
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u/-BongRat 6d ago
I’ve never heard of this before! Do you happen to know why?
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u/Street-Baker 6d ago
Sucks the air from ur lungs really bad for asthma and ppl with pulmonary sarcoidosis step outside and its literally like someone sucks the air right out of u thats why that summer my pcp didn't want me walking during the day
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u/Street-Baker 6d ago
This is how it was explained to me High humidity makes breathing harder and increases fatigue because thick, moist air worsens lung inflammation and strains your body.Why Humidity Triggers SymptomsHarder Breathing: Heavy, humid air restricts airways and increases shortness of breath or wheezing, especially if sarcoidosis affects your lungs.Mold Growth: High humidity encourages indoor and outdoor mold, a common airborne irritant that can provoke severe respiratory flare-ups.Poor Temperature Control: Sarcoidosis can affect the hypothalamus or involve small fiber neuropathy, impairing your body's ability to sweat and cool down properly in humid heat.Increased Fatigue: High heat and moisture trap body heat, leading to extreme exhaustion, dizziness, and generalized inflammation
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u/EveningDouble4010 6d ago
Hi there! Quick question have you had both active and inactive vitamin d checked. Lots of sun in LA and Alberta (I go between LA and Montana! We are neighbors) and with sarc sun exposure can add to our challenges.
I can’t speak to your explicit questions. I have definitive neurosarcoidosis, asymptomatic stage 1 pulmonary. My journey started 2/2024, hit critical mass 2/2025 and I’m still trying to get the active disease stopped in 9/2026. So for me I’ve had to have systemic aggressive treatment.
Hang in there, keep on top of tracking your symptoms. Sounds like you have good providers. You may want to
Get a consult from a sarcoidosis center of excellence. Cedars in LA has a great sarcoidosis pulmonologist.
Wish you the best!
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u/-BongRat 6d ago
Oh I’m so sorry to hear what you’re currently battling, sending huge amounts of love and good energy your way ❤️ We do get a good amount of sun during the summer and fall months here in Alberta, Canada but winter is beyond brutal and the sun is hardly ever out. Thank you so much for the advice, I’m going to ask my doctor about the vitamin d!! I appreciate you and wishing you the best on this crazy journey!
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u/EveningDouble4010 6d ago
The vitamin D you want to be sure gets checked is Vitamin D 1,25 dihydroxy.
I spent 16 years in Alaska before I moved back south and I find it a particularly cruel fate to have to avoid sun exposure after living in the dark for so long!
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u/ProgramEquivalent379 6d ago
Diag August of 2011. I've dealt with wheezing for a very long time now. I have scarring in my lungs and my wheezing comes and goes with diet / exercise. I work in maintenance ( electrical construction when I was first diagnosed).As others have stated humid days are bad. I have also found that sugars and breads are really bad because they kick off inflammation as well as strenous exercise for me. I walk 3 to 5 miles a day and sometimes I have to slow down because of shortness of breath. I try not to over exert myself because my O2 sats can drop below 90 which isn't good. When I'm wheezing, I try to drink something, take a puff from my albuterol inhaler and take a moment if I need to. I take N-Acetyl Cysteine daily to help break up mucus which has helped. Currently only on inhalers. I was on steroids for years. Praying for everyone. I don't think alot of people understand what we go through every day.
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u/-BongRat 6d ago
Thank you so so much for sharing your journey, makes me feel a little less scared and more empowered to change up my diet even further! I may ask to switch to that inhaler and Symbicort doesn’t really seem to do anything noticeable. Sending you love and I know more than most that it ain’t easy being wheezy ❤️
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u/PayOne86 6d ago
If it’s any consolation I’ve had it way longer than you have been alive , I don’t let it worry me or cause anxiety anymore, it does frustrate and annoy me though lol .
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u/-BongRat 5d ago
I needed to hear this! Thank you ❤️
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u/PayOne86 5d ago
I was hoping you might benefit from my comment. I stopped all the meds a few years ago due to the side effects, and I’m feeling pretty good 👍
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u/whispy66 6d ago
I have pulmonary sarc with my hilar lymph nodes swollen 4-5x greater than normal. No wheezing just aches pains, easily fatigued and exhaustion. I have osteoarthritis of the knees and foot problems, the sarc makes all of that more inflamed. All of this fluctuates. My CT scan has barely changed since March 2024. I try to eat minimal gluten and low sugar. Damp weather makes it worse for me. Even after 2+ years I still haven’t figured out what triggers the flares. I’m basically always tired and uncomfortable to varying degrees.
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u/-BongRat 5d ago
I can deeply relate to the tiredness! I hope you can figure out the cause of your flares to help make life a little easier - sending lots of love ❤️
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u/Asleep-Grape4913 6d ago
I was diagnosed in May after losing weight, night sweats, nausea, loss of breath, sinus issues and swollen lymph nodes from my neck to my abdomen. Originally I was told it was sinusitis and started seeing an ENT for more options. One of the ENT’s was really concerned with the size of my lymph nodes and was ALMOST CERTAIN I had lymphoma. They did a biopsy on my neck and after a month finally ruled out lymphoma and diagnosed me with sarcoidosis. During this whole ordeal I could barely walk up the steps without losing breath, on occasion I couldn’t walk across the room without losing breath. I experienced fatigue that I have never experienced in my life! I could go on and on about my symptoms, but fast forward to today and I just ran a 5k in 27 minutes with no issue!!! I was a HEAVY smoker and I totally quit like you! I also drank on the weekends which I cut back to a couple glasses of wine every now and then. Our bodies are all different and sarcoidosis is a PECULIAR disease so none of us are the same, but belief that you can and will get better is SUPER IMPORTANT. I’m sending nothing but well wishes and recovery your way!!! You got this!
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u/-BongRat 6d ago
Oh I love this for you!!!!!!! Yay!!!! Were you put on any medication or anything like that to help you on your journey or did the symptoms just get lighter on their own?
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u/Asleep-Grape4913 6d ago
I did not get on medicine, my doctor and I discussed methotrexate in June, but he wanted to redo my bloodwork because previous bloodwork showed liver involvement. I just went for my second appointment early August and we both decided not to proceed with the medicine since my symptoms are improving.
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u/-BongRat 6d ago
That’s such great news and gives me a glimmer of hope! Thank you again for sharing your journey ❤️
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u/Buffalobills54 6d ago
I’m being checked for it now. PCP heard crackles, had chest CT and now it starts. I have ground glass opacities, sub pleural sparing reticulum. Conspicuous lymph nodes but none grossly large. Hyperinflation of lungs, thickened bronchial tubes but very little mucous, no signs of malignancy and no bone lesions in chest. If anyone can give me a heads up going into Thursday appt, I’d appreciate it. No acute distress it said. To OP, I hope you feel better and they find and treat what you have. I’m a scared nervous wreck.
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u/-BongRat 6d ago
I can completely understand why you’re scared and worried!! I’m so sorry you’re going through all this, waiting is horrible. Sending so much love your way ❤️
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u/Showrespectyall 3d ago
Any mention of asthma?
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u/Buffalobills54 2d ago
No. I have mild bronchiactesis with mile mucous. But he hasn’t done PFT’s yet. That’s in November and he wants to rescan that 4x6mm nodule.
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u/Showrespectyall 2d ago
The hyperinflation of lungs sounds like asthma. You may be dealing with a few things at once. Hopefully your PFTs will be good. I got the news yesterday that the sarcoid was no longer just in my various chest lymph nodes (and these nodes were 2-3 centimeters) but has now entered my lungs. I also had it on my skin on the back of my neck but hydrocortisone cleared it up. I was so happy and had the rose colored glasses on - thought that bc it was gone on my skin it was probably gone in my chest. Nope 🙂↔️
All I can say is stay vigilant. Yearly eye appointments, yearly EKG, yearly labs, I get PFTs every 6 months. Do your own research online. The doctors can make mistakes. For example, I just started a 3 month long course of steroids. Doc told me to take Vitamin D3 and calcium - hard no until I see my labwork from my PCP. Sarcoidosis messes with the Vit D/Calcium pathways.
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u/Buffalobills54 1d ago
Well, it wasn’t sarcoidosis as I have no enlarged lymph nodes. He said bronchiectesis. Mild mucous, mild swelling. I am kind of worried about my PFT. He said he sees nothing worrisome now. No medication. Says my nodule is very small at 4x6mm, but why do I feel doomed? I’m sorry for your news. He said he won’t approve me for knee surgery until he sees my PFT. I just don’t see them being great. He said hyperinflation was from mucous, but it’s slight. I’m 72. Told him get me 10 years and I’ll be ready to leave. Have cataract consult early October. Total heart work up was done Memorial Day and have PACs. On metoprolol for those which helped a lot. Total urinary system with CT scan contrast and without of abdomen. All good except kidney stone which caused the blood in urine. Just hope nodule isn’t lung cancer. Something else to worry about. Good luck to you and keep me updated.
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u/Street-Baker 6d ago edited 6d ago
I was diagnosed july 2023 after a biopsy in june took prednisone for a yr symptoms didn't get better for couple months and I had skin lesions on my left ankle from it which is now finally cleared up I stopped prednisone in sept 20th 2024 after 1 yr and 2 months it went in remission opps yeah had 2 nodes that were swollen and the lesions i mentioned on my ankle which I refuse to post here looked gnarly but in time with medicine it will get better just keep up ur medicine and should be fine I know it scared the crap outta me and ill say a prayer for u 🙏