Cookies help us deliver our services. By using our services, you agree to our use of cookies. Learn more

Sarcoidosis

What is Sarcoidosis?

Sarcoidosis is a rare immune system disorder characterized by non-caseating granulomas which most often appear in the lungs or the lymph nodes.

 

Sarcoidosis is a rare immune system disorder characterized by non-caseating granulomas which most often appear in the lungs or the lymph nodes.
Acknowledgement of Sarcoidosis has not been added yet.
15.0http://www.orpha.net
Synonyms for Sarcoidosis has not been added yet.
The cause of Sarcoidosis is not known; however, it is thought to be caused by the immune system's reaction to factors in the environment. Sarcoidosis most commonly affects young adults.
There are several symptoms that affect patients with Sarcoidosis.
Name Description
Weight Loss Weight Loss
Lack of energy Lack of energy
Arthralgia Arthralgia
Dry Eyes Dry Eyes
Shortness of breath Shortness of breath
Skin lesions Skin lesions
Hypercalcemia Elevated natural Calcium manufacture
Diagnosis of Sarcoidosis has not been added yet.
Diagnostic tests of Sarcoidosis has not been added yet
Thirty to seventy percent of patients do not require therapy.
In most cases of Sarcoidosis, the disease spontaneously disappears, requiring no treatment.
Name Description
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.
References of Sarcoidosis has not been added yet.
Sarcoidosis Support Groups Created by RareshareTeam
Last updated 8 Aug 2018, 12:14 AM

Posted by RareshareTeam
8 Aug 2018, 12:14 AM

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.

itchy skin Created by silcyc
Last updated 3 Oct 2017, 09:47 PM

Posted by designpeace
3 Oct 2017, 09:47 PM

Good Day, 

Yes, i too have very itch skin with rashes and blisters.

Posted by silcyc
6 Oct 2009, 11:01 PM

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.

New User Created by usmgal
Last updated 19 Sep 2017, 08:43 PM

Posted by Megang123
19 Sep 2017, 08:43 PM

Hello,

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

Posted by usmgal
27 May 2017, 01:41 PM

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.

Managing Sarcoidosis Created by RareBonnie
Last updated 11 Sep 2017, 07:01 PM

Posted by suzenya
11 Sep 2017, 07:01 PM

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".

Posted by LSHELLY74
15 Oct 2010, 01:17 PM

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.

Posted by bonniesewlochan
17 Sep 2008, 03:05 PM

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.

View Full Thread (1 more posts)
Sarcoidosis specialist Created by Djgilligan67@gmail.com
Last updated 17 Jun 2017, 09:30 PM

Posted by kcarter29
17 Jun 2017, 09:30 PM

We did find a great rheumatologist in Metairie, La

Posted by Djgilligan67@gmail.com
8 Jun 2017, 04:11 PM

My husband has sarcoidosis and I am having a hard time finding a doctor to treat him for it. Anyone have any info they can share?

Edye Gilligan

Husband has sarcodidosis Created by kcarter29
Last updated 17 Jun 2017, 09:29 PM

Posted by kcarter29
17 Jun 2017, 09:29 PM

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.

Interested in sharing Created by stopcaidnow
Last updated 21 Feb 2011, 06:02 PM

Posted by amyblewis1
21 Feb 2011, 06:02 PM

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

Posted by stopcaidnow
21 Feb 2011, 11:59 AM

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

Posted by amyblewis1
21 Feb 2011, 04:35 AM

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

View Full Thread (3 more posts)
environmental factors Created by Tuula
Last updated 15 Oct 2010, 01:20 PM

Posted by LSHELLY74
15 Oct 2010, 01:20 PM

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?

Posted by Tuula
12 Sep 2009, 12:50 PM

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

Sarcoidosis, how is it diagnosed Created by Tuula
Last updated 13 Sep 2009, 02:42 PM

Posted by 42658
13 Sep 2009, 02:42 PM

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.

Posted by Tuula
12 Sep 2009, 12:04 PM

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.

immune system boosters Created by Tuula
Last updated 12 Sep 2009, 12:54 PM

Posted by Tuula
12 Sep 2009, 12:54 PM

has anyone found relief or improvement by going on a course of immune boosting products

Community External News Link
Title Date Link
Sarcoidosis: Local nurse leads support group for rare disease 08/05/2018
Community Resources
Title Description Date Link
Sarcoidosis Australia

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.

03/20/2017
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).

03/20/2017
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.

03/20/2017
The Sarcoidosis Center

The Sarcoidosis Center is a non-profit corporation designed to provide information for patients and physicians regarding sarcoidosis.

03/20/2017

Clinical Trials


Cords registry

CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.

Enrolling is easy.

  1. Complete the screening form.
  2. Review the informed consent.
  3. Answer the permission and data sharing questions.

After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.

Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.

Visit sanfordresearch.org/CoRDS to enroll.

Community Leaders

 

Expert Questions

Ask a question

Community User List

<p>I have multiple autoimmu...
My Sarcoidosis story: <p>&...
Hey! My name is Heather..Im...
Had Sarcoidosis since 1985
I am a 46 year old woman wh...
I am the President and Foun...
I'm also a sufferer of MRH ...
Leukemia, sarcoidosis, and ...
Worked as a nurse in early ...
I'm private, so i won't sha...
I AM 36 YRS OLD LIVING IN B...
I have Poland sysndrome re ...
I was diagnosed with sarcoi...
In 1998, I was diagnosed wi...
I am a 46 year old female w...
Wife, mother and grandmothe...
Solution provider - Health ...

Start a Community


Don't See Your Condition On Rareshare?

Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.

FAQ


Have questions about rareshare?

Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.

Discussion Forum

Sarcoidosis Support Groups

Created by RareshareTeam | Last updated 8 Aug 2018, 12:14 AM

itchy skin

Created by silcyc | Last updated 3 Oct 2017, 09:47 PM

New User

Created by usmgal | Last updated 19 Sep 2017, 08:43 PM

Managing Sarcoidosis

Created by RareBonnie | Last updated 11 Sep 2017, 07:01 PM

Sarcoidosis specialist

Created by Djgilligan67@gmail.com | Last updated 17 Jun 2017, 09:30 PM

Husband has sarcodidosis

Created by kcarter29 | Last updated 17 Jun 2017, 09:29 PM

Interested in sharing

Created by stopcaidnow | Last updated 21 Feb 2011, 06:02 PM

environmental factors

Created by Tuula | Last updated 15 Oct 2010, 01:20 PM

Sarcoidosis, how is it diagnosed

Created by Tuula | Last updated 13 Sep 2009, 02:42 PM

immune system boosters

Created by Tuula | Last updated 12 Sep 2009, 12:54 PM


Communities

Our Communities

Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.

FIND YOUR COMMUNITY
Physicians

Our Resources

Our rare disease resources include e-books and podcasts

VIEW OUR EBOOKS

LISTEN TO OUR PODCASTS

VIEW OUR GUIDES

Leaders

Our Community Leaders

Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.