Sarcoidosis is a rare immune system disorder characterized by non-caseating granulomas which most often appear in the lungs or the lymph nodes.
|Weight Loss||Weight Loss|
|Lack of energy||Lack of energy|
|Dry Eyes||Dry Eyes|
|Shortness of breath||Shortness of breath|
|Skin lesions||Skin lesions|
|Hypercalcemia||Elevated natural Calcium manufacture|
|Tip 1||Mental and physical wellness must always be considered as part of the full care plan. The responsibility is mostly placed on the patient to create and maintain this balance. I've found through my volunteer work within the medical industry coupled with my daily workouts (ranging from 15 min - 1hour) helps me achieve this balance and helps with my overall care plan. All of my specialists are very pleased with active role in this plan and believe it to be a successful initiative.|
This article was recently published about the Traverse City Sarcoidosis Support Group, one of many local support communities across the nation. Do you belong to a local support group? What kinds of resources has your group provided?
Check out this website to find a similar group in your area.
Yes, i too have very itch skin with rashes and blisters.
Has anyone else experienced extremely itchy skin? This began about 3 years ago, shortly before I was diagnosed with sarcoid. My dermatologist says it's due to the sarcoid but I don't seem to be able to find it as one of the many symptoms.
I noticed that the discussions seem out of date too! I've been looking for sites and did find one - inspire - search "stop sarcoidosis". It s a good source of information about sarc. I like reading all the posts, but they can be kinda scary. I don't have all the symptons mentioned from different users and I'm not sure what to expect. I
I was diagonosed this year (after 2 yrs of tests). I have it in my lungs and in my right eye. The eye is my main problem now. It is so full of debres and floaters that I cannot see out of it. I have been on predinose for 1 1/2 years, but I have to take 40 mg to even help my eye clear up which is too much to take on a long term basis. Have had 2 surgeries(vitrectomy) on it - It clears up for a month, then back to fogged in.
I need to get off the predisone and am waiting on my doctor to get the insurance to approve the medicine he wants me to start taking, as the predisone causes too much side effects. I now have predisone induced glaucoma in my right eye, The predisone causes cateracts and makes them worse and you can't do surgery on the cateracts until the inflammation is gone. ARRGGHGHHH
I just joined the community. It looks like the discussions are several years old. I was just wondering if anyone is still on here. It'd be great to connect.
I have dermatological sarcoids only. Hi there, I have NOT found topical steroids to be any use. They seem to make my skin worse.I have had this for 8 years or more and it's getting worse. I'm willing to try scorched earth methods. I suspect there is something more than just an autoimmune thing going on, but the biopsy says "sarcoidosis".
I have been on prednisone since prior to my sarcoid diagnosis. I know that all literature states that prednisone is one means of meds that can have a calming effect with sarcoid. I only notice flare ups evrey couple of months. Other than that, I suffer with chronic pain (everything from the neck down), swollen legs and ankles, chronic joint pain. Most of my flare ups are severe when the prednisone dosage drops below either 10 or 15mg. So I unfortunately have been on this medicine for years. I have lost 3/4 hearing in the right ear and haven't gotten it back and lost vision in both eyes. I have been on mexatrexate as well for a couple of yrs. I was previously on embrel but have recently been taken off. I recently started a medicine called Gabapentine.
Flare ups don’t seem to be avoidable. I believe that working out (with controlled exercises) 4 times a week for 30 minutes and remaining mentally active through business- oriented volunteer work for the remainder of weekday time keeps me well (as well as can be when you have sarcoid). To minimize the flare up - for me, I have an underlying "true" infection and this must be treated aggressively with IV anti-biotics (even if the it's location is unknown - use a broad anti-b) and then the sarcoid flare that accompanies this action seems to be easier to manage and seems to get minimized.
My husband has sarcoidosis. He has a history of German ancestry. He ws diagnosed with sarcoids in lungs in 1993 with no symptoms. After being in New Orleans during Katrina he had a blood clot then SVC syndrome with no history of lines. 3 years ago his H&H went down and he had ascites, and his albumin went to almost nothing. He also had severe cold spells, loss of energy and appetitie, and weight loss. It resolved on its own 6 months later. He now has some symptoms again. Sometimes the doctors just want to believe it is not sarcoids but always is.
Hello Lisa It's so nice to get messages I love it. I did join the sarcoidosis section it just seems no one has logged in in a very long time. I will keep checking. I don't you asking my age, I am 46, but ha ve spent the last 15 years NOT takingu care of me. I also have COPD and Bronchitis ... I get lung infections very easily. and now I am on oxygen 24/7 thats a lot to get used to. I live in New York, about an hour from Buffalo...its cold and snowy here today. You have a Blessed Day as well Talk soon Amy
Good Morning Amy, I am glad you are in a good place right now, and can concentrate on your health. I am glad you have reached out, I do want you to join the sarcoidosis community as well. Also, have you heard of FSR(Foundation for Sarcoidosis Research) they are located in Chicago,IL. 866.368-KISS I suggest FSR to you, so you have others to connect to that might also have to consider different avenues. Do you mind me asking how old you are? Do you have an overlap of dx or is Sarcoidosis your ddx(diagnosis)? Have a blessed day, Lisa
Hi Lisa, I was diagnosed 15 years ago, but because of so many negative things in my life, (very LONG stories !) I never concentrated on taking care of myself, and have just really admitted how sick I really am. I am in a good situation now though, able to make decisions that are good for me, and I am not being pressured or made to feel bad because I am sick. I have a terrible time with infection and just got out of the hospital on the 5th after a weeks stay, and have been taken out of wor, and put on oxygen ... Dr.'s want me to consider some different avenues, including revisting the option of a double lung transplant ... that is why I am doing so much research and weight my pro's and cons ... and I need others to talk too. So glad I found you. I hope we can become help for each other. I will share more soon. I know my faith is strong and God has a plan and will see me through this,, I know there is an answer, and God has a plan. I am looking forward to sharing. Thanks Lisa Amy
I live in New York City, where there are plenty of trees anf pidgeons. I am not sure if environmentally this makes it worse. I have a sensitivity to cold. As fall moves on and winter approaches, I am worse feeling during the days. It takes me a while to get started on my day. Does anyone have any suggestions?
do sufferers have a history of living in areas where many conifer trees are found or have they had close contact with birds doves or pidgeons
They should have been able to tell you from the surgery if it was Sarcoid if the nodules were non-caseating granulomas or what. That is usually how it is definately dx'd. There can be other symptoms such as weight loss, hair loss, night sweats along with a mirad of many others.
I am guessing that I have this condition, after seeing many specialists in South Africa they can find no positive reason for my persistant agressive coughing. Basically every time I inhale quickly as when laughing or shouting, when bending forward or sitting in a low seat, any exercise like walking up stairs. I used to be very active & sporty but now am always tired and consequently have become overweight. I had scans where they found a number of small nodules in my lungs when I had an operation to have one removed it was diagnosed as non malignant but no other comment. I have a mild reflux condition and slightly abnormal gastric action where food passes through my asophegous into the duodenum, which can cause coughing but not to the extent that I suffer.
The symptoms and signs that patients have with Sarcoidosis and Lyme are rarely recognised by most GP's and specialists, as constituting a discrete systemic illness.
Many symptoms associated with these systemic diseases are not seen as a whole constellation of problems resulting from the diseases themselves, but as separate and unrelated conditions which can include but not limited to: fibromyalgia, bursitis, arthritis, facial palsy (drooping and/or paralysis of the muscles on one side of your face), headaches, tinnitus, restless leg syndrome, uveitis, eye pain, blurry or double vision, blindness, weakness, numbness, tingling and/or pain in the face, arm and/or leg paralysis, muscle fatigue, seizures, behavior and mood changes, irritability, memory loss and hallucinations. Neurosarcoidosis can even include: nerve inflammation and damage, peripheral neuropathy, masses of granulomas in the meninges (or more rarely in the brain) that can lead to meningitis, hydrocephalus and neuroendocrine disorders and even coma etc just to name a few.
|The Dorothy P. & Richard P. Simmons Center for Interstitial Lung Diseases||
Founded in 2001 thanks to the generosity of the Simmons family, the Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease is designed to provide patient-friendly advice and support for people with Idiopathic Pulmonary Fibrosis (IPF).
|Foundation for Sarcoidosis Research||
The Foundation for Sarcoidosis Research (FSR) is the nation’s leading nonprofit organization dedicated to improving care for sarcoidosis patients and to finding a cure for this disease.
|The Sarcoidosis Center||
The Sarcoidosis Center is a non-profit corporation designed to provide information for patients and physicians regarding sarcoidosis.
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