Experiences with

Sarcoidosis

Following 10 years of Sarcoidosis, I have now also been diagnosed with pulmonary fibrosis. I was having infliximab infusions but for some reason this has exacerbated my condition and doctors have now decided to try me in Xeljanz. does anyone have any experience of this?

My Dermatologist referred me to someone else whose field is Tattoo Sarcoidosis he prescribed 2 different creams & (very) thankfuly it cleared up. I have been told that with Sarcoidosis you cannot have 'fillers', ( I would be very interested if anyone has) nor or any tattooing (no chance !!!!)

The results showed I had Sarcoidosis and because the lung lesions were discovered first it was named Pulmonary Sarcoidosis. The PET Scan also showed I have a Meningioma in the right side of my brain.

I was misdiagnosed as having Bipolar 1 (please accept I have peer reviewed research-based proof) and found studies that confirmed this medical condition is often confused/conflated with the oyschiatric disorders of Bipolar 1, hypomania, etc Does anyone have citations of research studies, peer reviewed

It is looking for signs of any Sarcoidosis re the heart. I have had Sarcoidosis for 15 years Thankfully stable with no treatment Had heart attack and 4 stents 4 years ago.

I have a sarcoidosis diagnosis (biopsy of lymph node in my 30s, now late 70s). Always had some kind of relatively minor skin problems most of my life. No one ever suggested they were autoimmune related.

Hi I have Lupus and a few other auto diseases , just a quick question is Sarcoidosis any relation and do any of you have it , 💕

my mother passed away from pemphigus because she was hemorrhaging from her mouth and nose etc. dr thought her labs were false positives and kept taking her off the steroids to redo the same tests. It also attacked her lungs. She had it for less than a year before she passed so i would recommend not waiting

Good that the article has been published - but they should not have missed the different forms of B6 which might be very important. [i]Simon never linked the pain in his hands and feet to multivitamins – but a pathology test did[/i] [i]A growing number of consumers are presenting with symptoms

I am on adalimumab and methotrexate. Together my symptoms are kept at bay. Unfortunately 8 months after starting adalimumab my wbc and neutrophils are plummeting. My RA nurse has suggested cutting out my methotrexate (25mg) for a fortnight and seeing if things improve. Terrified I might need to stop

I have been on Amgevita to settle my Uveitis but it is not working now so I am going to start Inflaximab infusion instead . Has anyone else had success with this biological to settle their Iritis.

She was diagnosed with sarcoidosis. However after becoming very unwell last month and a extended stay in hospital she has tested positive for something called Whipple's disease. Sarcoidosis seems very unlikely now.

I have had Sarcoidosis of lungs for approx 14 years very thankfully stable and no treatment except a short spell on steroids when first diagnosed. I am under the care of the Brompton London where they use the Scan to detect any Sarcoid with the heart.

Hello, two questions for you. One, has anyone has a retinal macroaneurysm? I was very recently diagnosed during a routine examination and wondered if it was common among PMR patients? I have had uveitis in the past. Two, I have tapered from 40 mg to 1 mg over the past 5 years for PMR. I am wondering

I’m on levothyroxine and also on bp pills. Rampril and amlodipine I sometimes get very loud hiccups can that be related to my pills?

My husband had his transplant in 2017. He has been ill for some time and had a PET scan 10 days ago. He has been diagnosed with Lymphoproliferative disorder. Does anyone know anything about this?

Just wondering if anyone has Pulmonary Hypertension caused by sarcoidosis of the lungs? I was diagnosed with sarcoid around 15 years ago, when it was found by accident on a chest xray [scarring very obvious - does the scarring mean fibrosis?].

Seems like it might be Sarcoidosis, as I also have very dry irritated eyes. I see my Hematologist again in about a week. I am so hoping that this will pass, as others have said that side effects from Peg decrease over time. Just don't know if I can keep taking it if this gets any worse.

I have my PMSA PET scan results but my follow-up is not until next week: Can I get your impression first (FYI, previouisly diagnosed with nodular sarcoidosis for lung nodules that are benign:) IS THIS THE GOOD NEWS I THINK IT IS?

Hi there, I haven't posted for a while as I successfully came off the prednisolone in January this year (well, I thought successfully).Since then (on March 26th 2024) I had a cardiac catheter ablation for paroxysmal AF, so far so good although recovery has been a bit of a bumpy ride. I am experiencing