Alright. I’ve had enough of this prednisone insomnia. I use benedryll and ativan to help with sleep but both are not great long-term.

I’ve never enjoyed mind-altering substances and have no desire to get high (quite actually, if I can avoid feeling high that would be ideal). Marijuana is legal where I live so…

What do you suggest for help with insomnia and anxiety?

I was curious on if Sarcoidosis affected serum Vitamin D Hydroxy levels making them high or low. I’ve done reading about Dihydroxy being affected but can’t seem to find much info on the inactive form.

Hi there!

I have an active pulmonary sarcoidosis (since 2020).

Recently I had multiple vertigo crisis: first time doing the star tour ride in Disneyland. Second time yesterday flying an old plane. I have never had vertigo crisis before.

Any clue if it could be linked to sarc? What should I do? Is it possible to train not to get those anymore?

Cheers!

I was diagnosed last year with Pulmonary Sarcoidosis and just now getting started looking into other areas.

1 large mass in lung biopsied confirmed "likely Sarcoidosis." I've had a thoracic surgeon directing the show because originally I'd thought I had lung cancer. She has me get CT scans every 3 months. No change, except the first shrunk a tiny bit and the second got a tiny bit bigger. It's time for my 3rd scan, which is 3 months after the last. How often do you all get scans?

MONITORING: I went to an Ophthalmologist who said there's no Sarc in my eyes.

I went to a new Pulmonologist who said to get a breathing test, which I've not yet scheduled. He said since I don't have severe shortness of breath, he wouldn't bother putting me on meds. (A prior Pulmonologist said the same.)

I saw a Cardiologist who told me to get a Cardiac MRI. I came here and saw several saying they got a Pet Scan so I requested that in order to avoid the MRI (I have sound sensitivity that's triggered hyperacusis in the past and I'm afraid it'll happen again if I get an MRI. I also have nasty anxiety even in pet scans or any test that requires me to lay flat, as I sometimes get dizzy/vertigo.) I can't find any places that do Cardiac Pet Scans near me so I guess I'm stuck trying the MRI. Regardless, the appt was about 10 min but the Cardiologist did have me do a 2 week heart heart monitor which I await results on. After the fact, when I called to initially ask if I can get a cardiac pet scan instead of an MRI, he had told his nurse to tell me to get a "routine echo." He never said that at the appointment, so now I'm questioning why he'd toss that in there later. What did he do? Google it? My "symptoms" are fast heartbeat which I've had for years, and always attributed it to being lazy (and sugar, caffeine & nicotine.) I've had palpitations but nothing severe. Last year I went for a vigorous walk in a somewhat tough terrain meadow and since I get no exercise otherwise, my heart was pounding through my chest to the point of being afraid I was going to drop. As soon as I sat in the car AC, I was fine. But that did scare me and I'm just not sure if heart pounding that hard (and shortness of breath from the walk) is normal when you're not used to exercise. It was POUNDING HARD!

Have you all spent as much time as I have questioning whether a standard Cardiologist is suitable, or whether you should have to travel long distances, just to monitor things? Thanks for any input.

Apparently my chest pain can't be because of my pulmonary sarcoidosis, because lungs don't have pain receptors. I should really have my heart checked out instead.

Words of wisdom from the NHS consultant I saw today who had clearly only read my file a few minutes before I arrived, got stuff wrong, and dismissed everything I said when he asked about any symptoms - often cutting me off mid-sentence.

Chest pain and a persistent cough were the main things that alerted me to the problem in the first place, and I had pretty much every organ - including my heart - checked during the diagnosis process. Every single list of sarcoidosis symptoms I've read includes chest pain, but I've also read that this kind of "it doesn't exist" dismissal isn't uncommon from doctors?

I just wanted to say thanks to everyone who posts in the group. For the last month I have been waiting for my sarcoidosis/lymphoma diagnosis.

After a rough EBUS, a following chest infection, I have been diagnosed with sarcoidosis.

I could relate to everything people post, and everyone sharing their experiences has really helped me.

Thanks

Adam

Hi all- I think I have insomnia or some sleep disturbance related to sarcoidosis. Prior to getting my biopsy results I was incredibly stressed/anxious as my lungs were “suspicious for malignancy…” I thought my inability to fall asleep for hours would get better when that stressor was alleviated. But I still lie in bed for hours before falling asleep. Very frustrating because I know its not good for the inflammation.

I saw some early 2000’s studies that melatonin can have positive impact on sarcoidosis. Anyone have any experience or knowledge on this? I have a call out to my doc but figured I would throw it out to you all over the weekend. Thanks!

Run out of anti histamines until tomorrow 😢

Hey everyone so, I have found that when I get really really tired my throat and tounge swell up. This is also what happens when I have nutmeg (an allergy that appeared about 10.years ago) I am currently fighting what I thought was a cold and really sore throat but my tounge and throat are again swollen. Benadryl helps this, but it just isn't going away. I get my next Remicade infusion on Monday-about a week after the "cold" symptoms started. And I have found that the last few month is 10-14 days before my infusion I feel absolutely awful. So is my immune system going into overdrive because it needs more Remicade? Suddenly allergic to something else?

Thoughts on this are greatly appreciated and sorry about formatting spelling etc, Benadryl is kicking in.

Is it always steroids? Or does sarcoid in places like the brain or heart different trearment the same as in then lungs?

I just want to say that sarcoidosis can go fuck itself!!

Hi. My husband was recently diagnosed and is about to start methotrexate. We were also about to start trying for a baby. His rheumatologist said there’s no real evidence that methotrexate in men will cause birth defects but I’m nervous.. has anyone here had a successful pregnancy and healthy baby that was conceived by a father on methotrexate?

I got off of my steroids after a year and a half finally on my bday i mean my course ended but we noticed new lumps on my hands coming up they seemed like the legions which came up during the initial diagnosis. These legions are different tho cause i can feel them hit my bones? But they are also coming and going frequently. Like after two weeks they die down by sorta sinking down deeper? I hope that makes sense. My doctor said we will do a biopsy once they come again. I wanna know if anyone else experienced this or if this is not related to sarco Thank you

(21 M) For the past 5-6 years, I’ve dealt with 2 serious problems, extreme fatigue / hypersomnia, and inflamed skin and nodulistic acne. Coincidentally, they’re all located where lymph nodes are.

I also get red ears during flare ups, my neck feels tight.

I’ve never been able to keep a job because of my fatigue, i sleep so much, 16 hours a day some days.

I have been taking this medication by infusion for over a year and want to know if anybody else is taking it. In my opinion it is way better than prednisone.

I work for a university, we have an academic health center. I am around 45 internists who deal with everything all day and stay on top of medical stuff.

When I read about sarcoid after hearing the possibility of having it I thought “oh okay, that’s not so bad” everything on the internet makes it seem almost benign, but when I mention it to my docs they get all serious and sollom.

What gives? Is this a big deal or not??

(Have since been officially diagnosed)

I started prednisone a week ago for pulmonary sarc. I expected to feel almost immediate relief but it isn’t happening.

Doc said I was stage -2 or 3, whichever is the one with grandulomas in both lungs and lymph nodes. I’m take 30mg daily. When should will I feel back to normal?

Symptoms- pain and numbness throughout torso. Tightness and constriction feeling in sternum and rib cage. Everything just hurts and exerting myself (aka just normal living) causes such tightness in my chest

Well it’s been about 2 years since confirmed diagnosis. I’ve had to go on disability from work just from extreme fatigue, can’t concentrate and problems with memory. I couldn’t handle prednisone so I’m stuck without anything. I’ve had daily pain in my chest and am on hydrocodone which doesn’t help as much as it used to. I’m hoping to get an appt with Mayo or Cleveland clinic to discuss if there is anything else I could try to feel better. I usually feel sick kinda like the flu on and off. I very rarely have a good day. Any suggestions on what I could try to feel better? I’m also overweight as well and don’t even have the slightest bit of energy to exercise. On top of all of this, I think depression is setting in too😢

I am sorry I don't have sarcoidosis, but my mom does. She has it in her lungs and it has progressed and she has emphysema. She does not talk about her problems to me much and keeps most of her stress inside. She suffers from several other auto-immune issues impacting her digestion and circulation. I want her to go to a clinic, but she is very worried about being prescribed steroids. She does not like being prescribed meds and is a bit anti-therapy. I feel like anti-depressants would help her in addition to going to a sarcoidosis clinic. I know it is her body and her life, but I am just looking for advice to how to talk to her about this from someone who might understand her feelings around her declining health. I don't expect you to help me change her mind, but I think she is either feelings hopeless or in denial.

Finally got put 30mg of Prednisone after 12 weeks of tests, scans and procedures. It has killed my fevers, night sweats and dizziness which ia nice. The one side effect I'm having though is really bad fatigue, especially on morning when I wake up. I usually end up taking a afternoon nap, and then in the evening I feel marginally better. Seems to be the opposite of what Im hearing, usually people have fatigue when tapering off. Is this more common than I realize and does it get better over time, or is this a trade off im going to have to accept?

Cheers, and all the best.

I’m new to all of this, and it’s a pretty scary time right now in my family.

My mom went to the ER on April 13th, after being sick for a little bit. She had Covid in November of 2023, and hasn’t really been right since. She’s 59 years old, has medical history of prior heart attack, chronic CRPS, a dying bone in her leg, and diabetes. She also has degenerative disc disease and spinal stenosis. While she has diabetes, she acts as if she doesn’t and will either not eat correctly or just not eat at all. I know the inflation of everything is adding to that, because she feels she can’t eat adequately.

They did a CT scan of her right then and there, and the ER doc came in and said she has stage 4 advanced lung cancer. There was a “mass” in her lung (lower right lobe), 2 on her adrenal glands and something to do with her bones, though they didn’t say what ones were affected and no one has mentioned that again. She was transferred that night to St. Elizabeth’s in Boston.

She also was treated in hospital for 2 PE’s, bilateral. She was there for about a week, received a biopsy on her left adrenal (though they said they biopsied both sides) Blood work shows nothing high except diabetic things (A1C, glucose) and then ALP levels were a bit higher. My understanding is that this would be liver related.

We got the call the other day saying there are no cancer cells in the adrenal glands, and they’re not sure where this stuff is coming from. She was set up with an appointment for a broncoscopy for this coming Tuesday, and had a pulm appointment today. Pulm really wasn’t able to confirm anything without biopsy of the lung but stated that it does look like it could be cancer.

Looking things up, I can see that people have been misdiagnosed with having end stage lung cancer, but am curious if anyone in here has particularly had this sort of thing happen? Can sarcoidosis cause issues in the adrenal glands too? Is a biopsy the best way to go with this all?

Sorry if this doesn’t make sense, my brain is just everywhere right now. Im trying not to spiral and I know looking things up isn’t good when you don’t have results, but I’m just trying to make sense of everything. I’ve been so anxious and scared and lost really.

Thank you for your help and support.

2 years ago I suddenly went into complete heart block which seemed like it came out of nowhere followed by a pacemaker fast forward a few months I was weak and so tired I lost my job so I went to work for myself for a few months now to a point my muscles and joints are so week just taking a shower is difficult the did a pet scan and revealed unnumberable amount of nodules in my lungs with a mass in the left bone lesions in hip pelvis vertebrae and ribs all lymph nodes are enlarged 2 biopsies later they say sarcoidosis my question is my body has deteriorated so much idk if I’ll ever work again and want to try to get disability but they look at me crazy when I ask like there’s nothing wrong with me anybody else have this problem

I am wondering if any of you have any tips or suggestions on what to look out for as I taper down. I’d love to hear both successful and unsuccessful so I can be prepared.

My backstory: I first started taking prednisone back in January of 2021. After my PET last month showed no active sarcoid, I’ve finally been given the okay to start tapering from my current 10mg dose. I will be staying on the Cellcept for now pending further testing after completing the prednisone taper. My doctor is doing an alternating day dose taper for the prednisone: 10 mg and 7.5 mg every other day for 2 weeks, followed by 7.5 mg daily for 2 weeks, followed by 7.5 mg alternating with 5 mg daily for 2 weeks, followed by 5 mg daily for 2 weeks, followed by 5 mg alternating with 2.5 mg daily for 2 weeks, followed by 2.5 mg daily for 2 weeks, followed by 2.5 mg alternating with 0 mg daily for 2 weeks. So if all goes as planned I will be steroid free in August.

I’m really excited but a little nervous at the same time because I have been on it for over 3 years. So I’m hoping that some of you will be willing to share your experiences and any insight. Thanks in advance!!!

I was diagnosed with pulmonary sarcoidosis in November 2023, I stayed in the hospital for 19 days having 2 biopsies, one surgical ending with a chest tube. I was put on prednisone and experienced every side effect possible. I was weaned off the prednisone and referred to a rheumatologist, appointment not until June. I’m the meantime, my life has changed drastically…headaches, chest pain, muscle aches, chronic fatigue and joint pain. The pulmonologist prescribed METHOTREXATE yesterday but after reading the side effects, I’m afraid to take it…any advice?

I have cardiac sarcoidosis as well as sarcoidosis so my question for the group is does anyone else suffer from this condition and if so, what kind of treatment are you receiving for it?

Hi all. 2 weeks since diadnosis. I was wondering if anyone gets relief from their pain with massage therapy, specifically “lymphatic drainage” massage? My husband gave me a gift if a massage before getting sick and don’t want to waste it- but I don’t want a massage to increase my pain. The lymphatic massage sounded interesting

Hi! 32F with sarcoid in liver, lungs, stomach, lymph nodes.

I responded well to 20mg prednisone but symptoms came back when I went down to 15mg, so we went back up!

My doctor is working on getting Humira covered through insurance and would like to then try to wean off prednisone.

Has anyone else done this successfully? How’d it go? No horror stories please, as I’m looking for encouragement.

And he’s battling not only the symptoms of pulmonary sarcoidosis, but it makes him feel like “less of a man”. He gets winded taking the trash out, he has no energy to get out of bed, he’s lost several jobs due to the fatigue. My question is, how do we get past this? He was on a heavy dose of prednisone for the past year when we switched doctors he was taken off the prednisone and put on methotrexate. His symptoms aren’t as severe on the methotrexate but he’s still just not feeling like himself. He says he feels worthless and like he can’t do anything. He just wants to give up most days. He says he hates seeing me have to work harder because he can’t. The way I see it is, we’re married, in sickness and in health, so I don’t mind really. But he does. How has anyone coped? How can he live a somewhat normal life? Any help or advice would be greatly appreciated.

I was diagnosed with sarcoidosis in late 2021 after my liver enzymes came back abnormal after my Nov 2020 check up. My doctor ordered follow up bloodwork to confirm and requested I get imaging done. December 2020 my imaging report stated I had lesions scattered throughout my liver and my lymph nodes were mildly enlarged. A few weeks later I got a CT of my neck, chest, abdomin and pelvis. In that report the doctor noted my liver as "unremarkable" (only time I'm grateful to see that word in regards to me lol) and that they couldn't identify the previously described lesions. Everything else was clear.

I ended up seeing an oncologist/hematologist based on the suspected lesions and they cleared me.

We've checked my heart, lungs, and GI tract for sarcoid and luckily those are all clear too.

So far, sarcoid has given me high cholesterol that is now in check. It has also sometimes caused my legs to swell up (also now in check). My liver enzymes are now back into normal ranges.

The meds I've been prescribed: Methotrexate (weekly), Folic acid, Ursodiol, and Rosuvastatin.

Anyone else have a similar experience?

Is any of you on birth control? Does it have any negative effects on your health? (I do not trust my doctor so I would rather ask people with the same condition as i) Thank you 🙏🏻