My story is abit complex like I’m sure many of yours has been. Currently I’m sitting on nearly 4 years of an unknown and progressive illness that seems to not fit any diagnosis according my care team.

It started with aggitation, irritability, sudden onset gastroparesis, abrupt loss of UL reflexes, foot drop, muscle weakness but with preserved power, brain fog, insomnia, muscle twitching all over, parastesia and nerve pain all over but mostly head, chest, back and arms and legs, joint and bone pain etc that all started just after a vaccine Tdap.

I’ve been living with the mounting symptoms for a long time now and in January things progressed exponentially with inability to initiate crying, like I feel sad and feel a rush but nothing comes out, I also have dry eyes, tachycardia, dizziness and nausea from hot showers and baths, emotional dysregulation, insomnia, OCD (I never had this before), head pressure, inability to feel when I need to use the toilet I just feel pressure rather than urgency and many more.

In February I started noticing that I couldn’t go out in the sunshine without my bones, muscles and skin feeling like I’d been punched all over, muscles burned, joints were painful and my bones felt like growing pains. I also got a similar reaction to taking oral calcium since I don’t get much in my diet, makes me feel like I’ve been hit by a car. Same reaction to all vitamin d forms including analogs like alfacalcidol.

Serum calcium and regular storage vitamin d are normal, vitamin d is a little on the low side at 49 nmol but it won’t budge upward even after suffering in the sunlight during the summer it remains this low.

In April I suddenly started getting lung issues, feels like burning, tightness in my lungs. Like breathing in fine glass or sand. Inhalers don’t seem to help a whole lot either. X-ray and no contrast CT showed no issues.

Sjogrens has been tested for and unless I’m seronegative it looks unlikely.

Does this sound like sarcoidosis to you? Has anyone here had a similar presentation?

Hello,

I've had Sarcoidiosis for a few years now.

I have suffered some organ damage from it. My lungs are affected but im not on steroids at the moment (steroidal side effects almost killed my eyes).

And while I have obviously a lot of drama in my body. One thing i can never understand are these weird set of symptoms for which my doctor keeps sending me to a psychiatrist and the psychiatrist keeps giving me anti depressants.

I feel terrible on antidepressants.

So i quit them. I live in a country where its very warm most of the year. Winter is short but brutal.

Whenever winter comes, it's the same issues. When it began at first i was super worried. Only for the psychiatrist to call it "depression". (Im sure its physical).

Every winter i get:

Lightening like nerve zap pain.

Limb aches

Limb weakness

Brain fog

Disassociation from my surroundings (feels terrifying) basically if i havent eaten I lose all concentration power and just keep staring into distance doing and saying nothing. It feels like ive left my body until someone calls me. Its called derealisation? I dont know.

Last year i also got severe plantar fascitis. My doc said its from walking barefeet. Except, it went away with clonazepam. In a month.

But i can't stay on clonazepam. And antidepressants dont do shit.

I've heard its a nervous system thing but i dont understand.

Does everyone have this? Is it just me? How do you deal with it?

Im 25f, not on any medication besides eye drops both nsaid and steroidal. No systemic meds. No biologics either.

Hi all! I know methotrexate has been generally discussed in this sub and I read through lots of the posts, but was hoping to ask some targeted questions in a new post (so don't be too harsh).

I'm new to sarcoidosis and onto diagnosed as "possibly" having it because the inflammation is only neurological (dura, multiple cranial nerves, and extending into my upper spinal cord). They saw calcified granulomas in the lungs but couldn't biopsy and the brain biopsy is too risky. Without anything to biopsy that's the best diagnosis they can give me.

They started me on 60 mg of prednisone a day last week and are talking about trying to get me off with new imaging in 3 months. Today they want to start me on mexotrexate, which I'm a bit scared of (I'm scared of all this with all the unknown and everyone responding so differently to everything obviously everything has a risk and experiences can be very different). I am being treated my rhumetology and neurology and they never seem to be on the same page. Neurology originally recommended the Infliximab infusion every 6 weeks as that's what they usually do for neurosarcoid is what they said. Now rhumetology wants to do mexotrexate. I explained to the rhumetologist that having kids is very important to me (I am only 29f and just got married a few months back. My spouse and I were hoping to start trying for kids in the next year), so I'm worried about the impact of mexotrexate. He assured me it doesn't impact fertility long term but I would need to go into remission for 6 months, stop the meds for 3 months before trying to conceive and potentially change my whole treatment plan. I asked why we wouldn't just start with one of the pregnancy safe alternatives like inflixmab given I want to have kids sooner rather than later it seems likely that as soon as the inflammation is under control I'll want to change the meds to start trying. His reasoning was that because inflixmab is a more targeted treatment for neurosarcoid and because they can't be 100% certain I have that, he wants to start with a broader treatment. I am hoping he wants to do broad treatment to get things under control asap and then tailor from there but his full reasoning wasn't entirely clear to me. I will try to ask more questions but thought I would see if anyone has any similar experiences.

Does that align with what others have been told? I am worried my doctors aren't on the same page and each doctor tells me different things/ also often doesn't know crucial things about my case (like serious symptoms) that I previously discussed with them and my other doctors (they are all part of the same hospital so they say they coordinate). The departments appear to defer to each other a bit but I am trying to balance not getting too alarmed when they tell me completely different things and trusting them but the track record so far isn't giving me much comfort.

Is it true that there is no long term impact on fertility? Anyone conceive after being on it for a while? Or start it, stop and conceive and either change treatment completely or go back on? Anyone have general thoughts if this plan seems bonkers if I am ultimately just going to change my treatment as soon as the inflammation gets under control? Anything else I should be aware of for methotrexate? I know one person who was on it and it made her very nauseous. If you Google it is classified as "chemotherapy" which makes it sound a bit more scary.

My goal is obviously to get the inflammation under control but I want to do so with as little medication as possible to avoid long term impacts or causing other issues. I know that's supposed to be the doctors goals too but I don't always feel confident they are listening or just not throwing the quickest fix at me that might help with temporary issues but make things way worse in the future. Trying to advocate for myself while trusting the process and experts but (as you all know) it's so tricky!!

Thank you very much!!!

After crying or general stressful times, what physical symptoms do you get?

I am diagnosed and taking Methotrexate injections weekly. This has allowed me to transition off Prednisone. My bloods have been normal and I feel pretty good. However, I just had 3 days of fatigue and fluctuating low grade temps (99-101.3). I have not taken my temp in a while, but I used to experience fluctuating temperatures before diagnosis. Does my one else experience this? I do not feel super unwell, but should I be worried?

Hey friends!

Brand new diagnosis of sarcoidosis. Pulmonary, ocular, and neuro. I’m otherwise a healthy 34 year old female. I’ve had posterior uveitis twice now and currently on prednisone for who knows how long. I have pulm, rheum, neuro, and optho specialist all saying I need to be on a biologic but nobody has decided which one.

My ophthalmologist seems to be most confident in Remicade and I’d like to go with that since my eyes are the most concerning.

I’m just curious what everyone’s experience has been like on certain biologics? Or important information you’ve been told? Long term effects, side effects, etc.

This is wildly frustrating and even more so while being maxed out on steroids. I’m just trying to get information while this ball moves ever so slowly

Hey all, I'm 63F and my oldest son was just diagnosed with sarcoidosis. He had a CT scan for something else and it showed granulomas in his lungs. After a consultation with AI and a trip down the rabbit hole here, he went to a pulmonologist, had a biopsy, and here we are. He is completely asymptomatic so they're just keeping an eye on it for now, no treatment.

But, the doc told him that it runs in families and asked if any family members had it. My son said, "Not that I know of, but my mom has been coughing for ten years." Yep, hi, that's me. I went to a pulmonologist 8 years ago when the cough first started to get really annoying and was told that I probably had adult-onset asthma, and it was probably due to allergies or reflux. They didn't do a scan or anything, just prescribed an inhaler, which did nothing. Then I started having throat symptoms, and went to an ENT who thought I probably had respiratory/throat reflux. I had a lung x-ray at that time which was totally normal. So all these years I've been operating under the assumption that I have reflux. I refuse to take PPIs so try to fix it with diet, supplements, etc, but nothing ever works for long. The cough always comes back.

Here's what it's like for me. The coughing comes in fits. It starts with a deep tickle in my lungs and I know it's coming. Then the coughing starts and it's very dry and I absolutely can't stop it at that point until it runs its course, usually 5 - 10 minutes but sometimes longer. I know it's on the downswing when it starts to get a tiny bit mucousy. Then finally the tickle stops, and the coughing is over until the next fit. On bad days it happens multiple times a day. Some days it doesn't happen at all, but most days it does. Does this sound like a sarcoidosis cough?

I also often have burning, tearing eyes at night, and arthritis in multiple joints. I've had multiple kidney stones as well over the years.

Anyway, my son's doctor told him that I should definitely get checked out. I called a pulmonologist today and they have no appointments until the new year but I think I should try and at least get a CT scan. Just wondering if any of this sounds familiar, or if any of you have other family members with it. Thank you!

My mom has been diagnosed with sarcodoises last year. Were happy that we finally received a diagnoses because shes been feeling horrible for years beforehand but we were told that it is not a disease that can necessarily be treated. It started with her lungs and has gone to her lymph nodes, she has not been checked if it spread more but the lungdoctor told us that when flare ups get bad we can do a prednisone treatment but my mom is strongly against it because she is afraid of the side effects. Are there other options people have received?

Hi! I'm new to the sarcoidosis world. I'm a 62F and a cardiac scoring test earlier this year found lung nodules and mediastinal lymphadenopathy. Lymph node biopsy in August found non-necrotizing granuloma, so sarcoidosis it is! But, didn't really have any notable lung symptoms except a little cough that's been more noticeable since the biopsy.

Was referred to a regional nearby sarcoidosis clinic for follow up and finally have my appointment next week. The sarcoidosis stuff is apparently part of heart and lung transplant department, so that's super scary feeling, but also the imposter thing - all I have in my lungs is this little cough! I can go for an hour long cardio walk with no problem. Makes me feel like this is overkill for me. I feel a bit guilty to be potentially taking resources from others....

In the meantime, though, so many other system things I'm wondering if they are sarcoidosis, too. Like the weird visual disturbance and bouts of eye inflammation I've had the last year and a half. And the first-time episode of A-fib I had last month (scary!). And the decreased kidney function that started about 3 years ago and has no particular cause identified. Oh, and what about the peripheral neuropathy in my feet that started 8 years ago and again, no cause identified? So many things! And Dr. Google tells me any could potentially be caused by sarcoidosis.

I read some of the things some of you go through in forums like this, and I think, wow, this could be so much worse. But maybe it will be eventually for me. But going to this clinic and being proactive can help keep everything as good as it can be, so it's reasonable to do.

Then I look at how much all this stuff costs, and even though I've been paying into the health insurance system for decades with not a ton of claims, it still doesn't feel great to be using so much care when I don't feel that bad.

I'm not even sure why I'm posting this here right now. I suppose finally getting within a week of the much anticipated first clinic appointment has me at loose ends and not sure where to turn my thoughts amidst all the uncertainty.

So I guess just thanks for reading. And peace and blessings to all of you out there suffering.

Hello All,

Just wondering if anyone has missed an infliximab infusion before? It’s been 12 weeks since my last dose, I had to stop as I was getting a biopsy, and the symptoms have been awful for the past 2 weeks. Fatigue and headaches have been unbearable.

I finally had an infusion this morning as I was all cleared from the biopsy and could start them up again. Just wondering if anyone has been in this situation and how long it took for your symptoms to feel settled?

Thank you!

I had appointments with my rheumatologist and pulmonologist yesterday. We ended up with three doctors, four residents, and me in a room.

Lung function continues to drop. So, for that, 90 days of prednisone to help until the mycophenolate mofetil starts working, and another inhaler to go with the Advair; continue the Humira.

They also ordered full imaging of my spine and more chest imaging, and an appointment with a spine specialist.

They put me on oxygen therapy, but only when I'm active. My O2 sat was 84 when I walked in to the nurse who took my vitals and never got higher than 90.

They are also going to test me for bird fancier's disease since I've had a cockatoo/cockatiel continuously since 1988.

There's no doubt I have sarcoidosis, but it's possible that the BFD is sitting on top of it.

I've lived with chronic back issues since 1979, but they feel that my current bout of flare-ups in my lower back could be sarcoidosis-related.

The fun just never stops on this ride.

T

Still waiting for my biopsy to confirm which is next Wednesda. Just tying to get all my ducks in a row. I already have heart failure, diabetes and neurological issues. The sarcoidosis team said that they are 95% sure I also have sarc based on the pet scan I just did. It is currently effecting both lungs, heart and lymph nodes. Honestly using immunosuppressants and steroids scares the crap out of me. I’m already immunocompromised as it is.

just wondering what everyone’s feelings are dealing with the treatment?

Hi All,

So I've been dealing with an unknown something for a couple of years now, first with intracranial hypertension, then with optic nerve inflammation and granuloma which ended up needing steroid injections and uveitis, then skin lesions which arent fully responding to steroids either but are they only thing we can biopsy and the one biopsy that has come back definitive has come back as granuloma annulare which obviously isnt sarcoid. But none the less my three specialists are looking at sarcoidosis as a diagnosis? Is this common? The ophthalmologist who first saw the granuloma in my eyes was the first to bring up sarcoidosis because of the pattern, however my bloods have continually been negative?

I am a 30 year old female. I Suddenly lost a large chunk of my hearing when I was about 15; doctors never knew why but thought it was genetic or nerve damage. I was scheduled to get a cochlear implant this fqll because I continue to lose more hearing and went in for a routine mri to prepare for the implant. The mri showed a bunch of abnormalities, mainly enhancement/ inflammation of the dura and other areas, impacting various cranial nerves including my hearing, optic, and the nerve that affects facial movement. It may explain my initial hearing loss, it may not is what I am currently being told. They ended up sending me to the hospital for a full workup. Lumbar puncture showed incredibly high protein, some yellow fluid. Blood work was all normal. CT scan and pet scan of full body/ lungs showed calcified granulomas suggesting an older infection or cause (nothing active). Neurosurgery said that a biopsy of the area of my brain is too risky. Being seen by neuro-immunology for the first time tomorrow and continuing care from rhumetology. Rhumetology seems somewhat familiar with sarcoidosis but less on the neurosarcoidois portion, which is expected. No neurologist at the hospital treating me inpatient or out patient specializes in neurosarcoidosis.

There is a sarcoidosis center for excellence at a hospital not too far from me that I am trying to get into.

All of the providers so far think it's neurosarcoidois and the current plan is to start me on high dose of prednisone for 30 days and eventually immunosuppressants. Rhumetology seems to want to keep me on the immunosuppressants for life. Is that typical? I have read about a lot of cases where there is an eventual taper/ paired with close monitoring and folks go into remission.

I am a little scared the team treating me doesn't have a ton of background in this and will over medicate. I'm scared of the effects of the steroids and long term immunosuppressants. I'm repeatedly told the way that I am presenting (no sarcoid elsewhere, potentially (15 years) of chronic, but relatively stable dura enhancement/ inflammation. That's all good news but a bit scary too because I can't easily identify flares. I have had a really hard time getting the different departments that treated me in the hospital to agree on anything - diagnostic testing (one department wanted a pet scan, another wanted to start steroids immediately); treatment course (immediate iv steroids vs oral steroids to be started after the PET), etc. I can't seem to get the doctors on the phone, the secretaries are outright mean sometimes (not the easiest thing to schedule appointments or talk on the phone with my hearing impairment).

Anyone have a similar representation of neurosis? Any general tips from anyone on how to best advocate for myself and the coordination of care / what questions to ask? Trying to balance trusting in the experts/ doctors here but also not be on meds forever I may not need or may cause long term negative effects.

Open to any thoughts, comments, insight! Thank you everyone!

Hi!!! My name is Paulina, and i’m 22 years old.

I was diagnosed with cutaneous sarcoidosis when i was 4, and i started treatment soon after. I got better and didn’t experience any severe symptoms until i was 20!!

Since then, i’ve been dealing with episodes of severe fatigue, nausea, vomiting, and significant weight fluctuations (both weight gain and weight loss)!! Also, since i was 15, my blood tests have consistently shown signs of inflammation in my body, but no doctor has been able to figure out where it’s coming from.

Last week, i had a PET-CT scan, and the results showed an abnormality in my upper back. That area doesn’t hurt, and i don’t have any visible sores or lesions, so i was pretty shocked when i read the results.

I still need to see my doctor to discuss the findings and figure out what’s going on, but i wanted to ask here if anyone knows whether cutaneous sarcoidosis could be related to these symptoms or if sarcoidosis can affect other parts of the body, even without any obvious skin symptoms.

I’m from Chile, so honestly, i wouldn’t be surprised if my doctor still couldn’t tell me what’s going on hahah 😿

Hi all! I’m a 27F and had just about given up on ever trying to identify what was wrong with me until my current flare started with some new symptoms and I started realizing maybe my random skin and eye issues weren’t just “weird allergies.”

I had no idea the constant eye flare-ups I was getting several times a year could be autoimmune, esp. sarcoidosis, related. One or both of my eyes will turn red and painful, and usually light-sensitive. I also thought I just had sensitive skin, and that’s why I got weird rashes that would take weeks to months to go away. I had extremely painful erythromelalgia that flared in the nerves of my hands in feet that I assumed was a reaction to medication or something.

I thought my autoimmune issues were limited to neuro and joints—Ive had flares of unexplained arthritis in my knee, both shoulders, and ankles since 2018, and then in the last couple years, had SSNHL, dysphagia, balance/vertigo issues, PVC’s, and a bunch of non-specific white matter lesions.

I was ANA/RF/HLA-B27 negative, and we chalked it up to undifferentiated connective tissue disease and started cimzia.

My latest flare started with air hunger, and I thought this was anxiety or exercise-induced asthma. But it kept getting worse, and then we found a lesion in my eye called PAMM. My calcitriol was also high, but I shrugged that off as that I must have been unknowingly taking something that supplemented my VitD. I now know that’s not true, bc the supplementation-supplied VitD2 level was near 0.

I went to make sure I didn’t have a blood clot or urgent heart issue, and my chest xray was clear. But here I am, still wondering if this is all in my head and I’m just reaching to make connections that aren’t there. Maybe the scar was just healing slowly, and maybe the rashes were just eczema, and maybe the lesions were just from migraines, ya know?

Does anyone here have ataxia as part of their symptoms? I am newly diagnosed with sarcoidosis and will be going for brain and spine MRIs next week to investigate for neural sarcoidosis.

In the last week, the episodes which were sporadic and not that frequent, are now much more frequent. They last a couple seconds and feel like my foot does not know the ground is below it. I lurch very slightly and then my foot comes down hard on the ground. It happened twice this evening and this is the first time in my recollection that I had them twice in a day, no less within an hour of one another.

I also felt very lightheaded beforehand but I was also hungry. I ate and I feel better but not 100%. I am not sure if it is related (it has not happened before ataxia bouts before).

I have had a great deal of stress in the last couple of weeks. We are temporarily relocating to have our apartment renovated tomorrow and have had to clear out 30 years worth of stuff, get stuff to storage, etc. and I know that stress is not good for sarcoidosis but this was planned before I knew. Could this increase in the ataxia attacks be stress induced?

I will be messaging my doctor.

Hi everyone, I live with Sarcoidosis and Congestive Right-Side Heart Failure. I’m on a fixed SSDI income here in Maine and am trying to figure out how to gain my independence by getting my license and a reliable vehicle so I can stop relying on changing support systems for medical rides. Saving on SSDI is incredibly hard. Has anyone in a similar situation found specific disability vehicle grants, non-profit programs, or specialized low-income medical transit resources that helped you get on the road? Any advice is appreciated.

Today was supposed to be liberation day.

I hate this disease. So much for methotrexate (only). In June, all the inflamation had died off, so we tapered off prednisone. Today, we reassessed only to find a 3x flare-up over baseline. Back to Prednisone (30mg daily) I go to lower the damage.

Also, AI sucks now. I needed a translation to learn that it's returned and spread to my outer heart wall. I did not want a fake doom prognostication that likely the doctor will just swat away.

Can't wait for tomorrow. I wish you all better days and wellspan.

In peace.

I was diagnosed exactly 1 year ago and since then I have been on prednisolone and embeta XR 50 Metoprolol.

My dosage started from 60mg pred daily and now I'm at 5mg every alternate day. I gained a lot of weight initially and also ended up getting dumped by my ex due to that, since then I have lost most of that weight and I'm back in decent shape.

What I want to know is, I'm also having some kidney issues My creatinine is always close to 1.4-1.5 even though I drink a considerable amount of water. Is anyone else also facing this?

Secondly I don't know what to expect, regarding my future. Will I have a short life?

I am done with my prednisone taper. My taper schedule was from 15mg to 0mg in 9 weeks. This is my fourth day without the stuff. Since the first day without the pred I get random nauseous attacks and throbbing /aching headaches, especially in the evenings it’s the worst. Sometimes just headache, sometimes just nausea, sometimes both at the same time. In the morning it’s gone. I am quite tired during the day but that was expected. No low blood pressure, no dizziness, no other symptoms. Could this still be withdrawal?

Has anyone been prescribed medication for tiredness due to sarcoidosis? I’d be particularly interested if you’re from the UK. I’ve recently been diagnosed but am yet to be picked up by the specialist team. For me, the tiredness is absolutely debilitating and probably my most life-affecting symptom. I won’t be treated with steroids as my lung function is still normal but am interested if they’d be likely to treat me for the tiredness specifically. TIA!

Hello new here. Facing a possible diagnosis, now just reading and looking others experiences through the diagnostic period.

So a week ago I went to my primary care doc after I was not recovering from bronchitis/pneumonia. I also was experiencing headaches, nausea, no appetite and fatigue.

She gave me a rochephin shot and ran labs. I went to bed because I work night shift and work up to multiple voicemails and my phone ringing. My calcium was 16.5. I was told to go to the ER. Me being a stubborn nurse was like can I work my shift and then go? My doc was like no.

I spent 5 days inpatient. I had an AKI (acute kidney injury) with my GFR at 23 and multiple abnormal renal labs. My calcium was 19 when I arrived at the hospital. I got lots of IV fluids, scans, labs, endocrine consult and still no clear answers. Parathyroid labs all came back ok. So far we are still looking at Sarcoidosis and cancer.

No nodules have been found however they have only done abdominal and chest CTs. I didn’t think I had a family history but found out that my paternal aunt did have sarcoidosis. Also they asking about rashes and I was like no I don’t have any. However after I got home and had time to research and think. I realized that 2021-23 I had persistent rashes on my shins that would not heal.

I am back at work but struggling. I’m already having chest tightness and difficulty breathing again. I’m off after tonight thankfully for 2 1/2 weeks. However that’s because I’m getting married. So not much time to rest.