Hello all, I was happy to find this support group, thank you for allowing me to join. I hope to learn new info about sarc, its treatments, and from others experiences … as well as offer some of my personal experiences from over the past 23 years and with this chronic disease. I guess this would be my introduction! 🙃
I am a 56 year old Caucasian female living on the Eastern side of the USA. I was first diagnosed in 1998 with pulmonary sarcoid after a biopsy. Around 2004, it cleared and I was left with significant scarring. After a year of no prednisone and a weight loss of just over 100lbs, it was found in my bone marrow from head to toe, after a PET Scan and via a bone biopsy. Back on the prednisone, and that 100 lb return, along with the same additional meds. Around 2014, they determined I had hypothalamic sarcoidosis that caused my pituitary glad to not fire correctly resulting in adrenal insufficiency and hypothyroidism, both secondary. I was moved from prednisone and the other pills, to Remicade infusions, which I am currently still receiving every 4 weeks. Once again, I lost just over the 100lbs, which was a huge help, again.
Like many of us snowflakes, sarc has caused many other issues for my body over the years. I developed bilateral neuropathy, RA, Fibro, joint issues, muscular issues, 4 ribs that pop out of place easily, broken bones, Sjögren’s syndrome, insomnia, I’ve had seizures, 3 mini-strokes, migraines, and more. It feels like with sarc attacking one’s body, all these other illnesses like to piggy back. Could very well be from treatments, as well. I have neurological issues, balance issues, and sometimes think I’m going bonkers. 😜
I’d be interested to learn what others have had come after their sarcoid diagnosis as well as what treatment is, or has, working best for them.
So, this is my story I’m a nutshell. I have pulmonary sarcoidosis, bone (marrow) sarcoidosis, neurological sarcoidosis, and hypothalamic sarcoidosis. I do the Remicade infusions every 4 weeks with no additional treatments. Knowing one can build a tolerance to Remicade, I often wonder what’s next. I don’t feel like my sarc is so much “active” as it is more so my body is just reaching, feeling, and fighting the damage it has left in its wake.
Thanks so much for reading my story… I hope I didn’t make it too long. I look forward to being a member with you all. 💜
