Hi 👋 is anyone else flaring right now with the change of weather/season?

Happy Thanksgiving 🍁❄️

What’s your self-care routine like? OR planned goals for the new year?

My first goal: Make my plan visual (where I can easily see it daily) because brain fog 😶‍🌫️ hinders my follow through.

I was diagnosed with sarc over the summer and had Covid twice last year. The first time (in Jan) wasn’t bad at all but the second bout of Covid (Aug/Sept) was way worse and I rebounded as well. It got me to thinking…

Random, I know. Anyone else constantly yawning?

Pulmonary sarc here (with lung fibrosis). Despite the lung damage, my lung function is normal, but I’ve been feeling short of breath and yawning…like non-stop 🤷‍♀️

Sorry for the long post - feel free to skip to the questions at the end!

I was diagnosed with pulmonary sarcoidosis a few years ago and had a flare up of symptoms last year/early this year where I had lymph node swelling, back pain and felt generally exhausted. My specialist wanted to hold off on trying medication to see if the symptoms settled and I got regular reviews. Happy to say that it did settle, and although I still get tired quickly the fatigue is not as bad as it has been.

Last week I started to feel run down and I was off work for a couple of days as I felt ill and just exhausted. I feel I've probably had some bug or virus but the tiredness is just sticking with me.

My manager has made a comment about my absence, asking if I feel this way a lot and it's just stressed me as I know my attendance has been bad - I've probably had about 8 days off here and there in the last year.

I work full time, mainly home based but office/travel to sites is being increased next year and I'm concerned I might struggle and looking for some advice and insight. I've been considering asking to drop some hours and go part time but that will be a little financially challenging 😞

Even with sarcoidosis being more settled or in remission, does the fatigue ever go?

How have you balanced out work life? I'm interested to hear if going part time could be worth it for me or if I should really be just trying to battle through.

Is it worth asking for an earlier review by my specialist and considering medication? I got the impression he wouldn't consider it with my symptoms more settled at the last consultation. My next appointment will be March 2025.

It’s been over a year journey for him. Late summer 2023 he would start feeling weakness in his legs, back pain,he would fatigued, and tired which seemed to make symptoms worse . By the fall his legs would give out on him. Thinking it’s was a bad back, herniated discs . He went to a chiropractor. Wasn’t helping. The next big thing to affect him was he couldn’t urinate. Numb waist down. Went to ER. Now what was interesting was he walked in the ER on his own . They gave him a high dose of steroids. When they brought them back from the MRI, he tried to get to the bed and couldn’t walk at all. They diagnosed him with transverse myelitis. He seemed to bounce back a little. Then he ended up in hospital again last December. So doctors were treating him for transverse myelitis. This time he didn’t get a bounce back and slowly getting weaker, he now needs a walker. Incontinent .A little over a month ago they diagnosed it as neurosarcoidosis. Since it’s his spine, it was too risky to try to take a biopsy. Another round of high steroids taper. Tomorrow they are starting infliximab treatment. We are not sure what to expect. Would love to hear from some others experiences with this drug, and experience with this disease. Any advice. I am to wishful to think this will help him with his symptoms. His doctor tells him he will be on permanent disability, the rest of his life.

Just wanted to a shout out to all the men out there who have undergone a vasectomy.

Aside from the (potential) crippling fear you have to go through this. You did it. And women thank you.

Thinking deeper about it, it isn’t about the pain of the procedure. It’s a lot more than that. Thank you men. Thank you for taking one for the team and not showing how hard it was (layered)

A chapter closes. And that’s a lot.

As a 37 y/o f I’m looking into tubal ligation due to a medication need. It’s throwing me.

It’s vastly overlooked what you go through when you get a vasectomy.

I see you (as well as I can as a Woman)

Today I had a voice message from the cardiologists after my cardiac MRI, and she said it looks to be that my heart is inflamed and weaker than it should be, and that it could be due to nothing, to an infection, or that I have cardiac sarcoidosis. I have a feeling she said the first two so that I would be calmer About it, but she wants to get another test and start me on medication that will control the palpitations and make my heart stronger, she says. The only symptom I have is that I have heart palpitations, though, and no chest pain, no shortness of breath, I feel mostly fine. I looked at the medication‘s and the side effects seem horrific, and it honestly scares me since I’ve never taken any sort of medication before. Things like higher blood pressure, higher blood, sugar, insomnia, mood swings.

I’m honestly just looking for some responses because this is a bit scary, or a lot scary. I’m a 35 year old man and mostly healthy other than drinking sometimes and the occasional pizza. I’m worried about the medication, I’m worried about suddenly having heart failure, and the implications of having this disease.

Hello I currently have a working diagnosis of sarcoidosis, I am currently in a flare up of several back pain, fatigue, insomnia, dizziness, near fainting. Chest pain, and major brain fog. I am 2 months out from a rheumatology consult. They started me on 1 a day colchicine. This hasn't helped yet. What should I do?

My husband has lung sarcoidosis and it may be spreading to his eye. He is now showing a bit of a rash on the same side of the face and a darkened undereye. He has a doctor apt this week. What might be recommended-steroids?

How can one know that he is in remission? Do the lymph nodes size get back to normal? Or do they stay swollen even in remission?

I was recently diagnosed with sarcoidosis. They did a CT which showed multiple pre-carinal lymph nodes in the AP window...the np did not explain this to me. I am supposed to get a PET scan next. Can anyone help me understand this better?

Thank you 😊

Entering year 6 since diagnosis, 4 years of treatment, now on plaquenil, humira and slow dose steroid. I had a huge sweet tooth as a child/ young adult. Much improved diet as I age, but I lapse @ holidays. Seeing a strong connection in my arthritis/muscular symptoms if I eat sweets or have any alcohol, feel like I have almost become allergic. Is this a menopause or sarcoid reality?

I have Sarc in my lungs and lymph nodes surrounding my lungs. The past few days I feel like my chest is burning. Especially if I take a deep breath. I thought is was heartburn at first, but I took medicine for that and it didn’t help. I am seeing my doctor tomorrow but I’ve never experienced something like this before.

Anyone forgo trying something like methotrexate and go right to humira or remicaid after trying steroids?

So after months of waiting I had my first appointment and a Ct scan.I have little granulomas in the lung and 2 skin tags.The doctor said it’s not that bad so he doesn’t want to do anything.When I told him I have breathing problems he kinda blamed it on my weight which is not even true because I have lost weight before and still couldn’t breathe properly.Also my lymph nodes on neck are swollen.He said that could be because of something else but when he saw my skin tags he was like yes that’s sarc but still not recommending to do anything.Should I see another doctor or listen to him? Confused

I can choose which I want. I have multi system but it's lungs and eyes I'm getting treated for. What are your thoughts and experiences on the two medications?

Hi new here. After over a year of dealing with facial numbness it have been taken seriously. My 1st specialist app back in July they told me they wanted to check for MS. So far I've gotten an MRI of my brain (3 lesions found- 2 in the pons 1 small in craniocervical junction) lumbar puncture came back completely normal. Just had spinal MRI last week waiting on those results. I also just seen a neurologist for the 1st time last week & he's pretty sure it's MS but the LP results are throwing it off & the 3rd lesions is quite small so not sure if he can count it just yet. & he wants another brain MRI with contrast this time not super sure why that would make a difference but whatever. He did say its either MS or sarcoidosis. But im curious as to why he would jump to that conclusion. I've never heard of sarcoidosis. Every blood test ive gotten so far has been normal. Would it be neuralsarcoidosis since I have brain lesions? What kind of testing needs to be done for sarcoidosis?

Thank you for reading!

To preface this question, I have chronic sarcoidosis that was diagnosed via surgical removal of a lymph node. Up until now it has repeatedly caused my spleen and lymph nodes to blow up in size, but hasn't affected many other organs.

I recently had a chest and abdominal CT because I've been feeling rotten again and on top of my spleen being big again, my liver is also going up in size and they found a pulmonary nodule.

I was told about the nodule by my GP this afternoon but he didn't want to elaborate on it as he feels it's a conversation better had with my rheumatologist (who ordered the test). This has kind of left me in a weird spot emotionally.

How worried should I be? Last time my spleen and lymph nodes blew up in size they made me do 50mg of prednisone per day for almost a full year which then took forever to come off of again. I don't know if I can emotionally handle prednisone again.

TIA! I hope all your personal journeys with this garbage disease are going well. ♥️

Hi everyone!

I’ve read a lot of posts talking about different alternatives to steroids.

The one I know most about is methotrexate. My rheumatologist mentioned I’d have to be on 2 types of birth control. I said oh my husband had a vasectomy. And she just looked at me blankly like , okay but you still need a second form of BC. Weird okay. Another person (male) mentioned how you can’t drink on it.

Looking for the stipulations around all steroid sparing immunosuppressants.

Just so I know what to ask for given what I’m okay with. (I.e. I don’t want to be on a hormonal based BC, I like not taking BC, it messes with me) so what are my other options?

Got a repeat CT of my chest today. Results will decide if I continue to wean off prednisone or add something else to it. (37 y/o F)

TIA!

Hi. I am tapering prednisolon Right now and my symptoms (shortness of breath) are becoming worse again. Is here anybody who‘s symptons noticeably improved with the right medication? Am a bit desparate at the moment and need some cheering up.

I'm diagnosed with pulmonary sarcoidosis but general testing after the diagnosis is not compulsory in my country. Accordingly, I wasn't referred to any further testing. However, I was speaking to my psychiatrist the other day and he suggested I get an MRI. I feel inclined to do that specifically due to a very irritating symptom I've been experiencing, almost on a daily basis: my brain feels like it's on fire. Literally, all day long. Except sometimes it just gets worse or better, depending on how stressed oe tired I am. Either way, it hurts.

I also have a long history with headaches, although they don't necessarily correlate with the burning sensation. I'm bonding to what extent this could be a typical symptom of sarcoidosis? If you've experienced this before, what have you done about it or how have you dealt with it? I would greatly appreciate any tips.

I've never used this platform before, here's to trying something new. Looking for support and advice on navigating my rare and complicated new life.

I'm a 37yo SAHM newly diagnosed with cardiac sarcoidosis it's also in my lymph nodes locations neck, chest and abdominal area with lesions on my spleen an enlarged liver. I am one week post op from a pacemaker with defibrillator placement.

I have so many new doctors and one pushing that I be seen at Cleveland Clinic or Vanderbilt sooner than later because of how rare and complex my case is. ( I don't disagree with going but not sure what to expect)

Any advice on what to start doing now or what I should start asking my doctors?

I have another cardiac pet scan at the end of February 2025. First time in the hospital for this and I was there for 12 days.

I know I've been called incredibly rare and I don't know if I like the sound of that. I had been struggling for a long time and I'm so grateful that I have a diagnosis but I'm terrified that this diagnosis is worse than cancer.

I'm a faithful woman. I feel God gave me the push to look for those who have some wisdom to share about this.

In the District of Columbia, Maryland and Virginia metro area there are three hospitals identified as having sarcoidosis clinics by the World Association of Sarcoidosis and other Granulomotous Disorders: Johns Hopkins, MedStar Washington Hospital Center and Inova Fairfax. If you anticipate needing a transplant in the very near future and you lived in the middle of these hospitals, where would you go for treatment?

Hello everyone i just recently recieved a "working" diagnosis od sarcoidosis. For reference I'm 30F. I have been in and out of hospitals for years, colonoscopies, mris, x rays, blood tests. My symptoms range depending what has been going on. In the past I have had severe back pain, migraines, going blind during a migraine only in 1 eye, sense of rain drops on skin while inside. Migraines and back pain are still occurring but since the last two years since I got pregnant with my twins, I've lost 65 pounds during pregnancy, had heart palpitations, swollen and painful joints in my legs and feet, now getting painful red lumps on my legs and feet that eventually go away but leave a purple mark. I also have extreme fatigue, loss of appetite, nausea, loss of libido, a general feeling of "me" pain like the flu. I have been diagnosed with IBS but nothing explaining all my other symptoms. And my tests always come back "normal". My question is do you agree with the doctors of sarcoidosis. As far as I know I don't have any lung involvement. Autoimmune runs Strongs in my family as well as hypo and hyper throidism.