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Posted by @lindag2 in Autoimmune Diseases, Aug 27, 2012

Has anyone had a good result with their treatment with very few side effects?


Posted by @alexsimon, Aug 29, 2012

Dear Linda.G - Mayo Clinic has some information available at that may give you some additional background information to help you make an informed decision.

Also, if you are interested in speaking to a physician to get an opinion about the treatment please contact Mayo Clinic here

Edited: 08/24/2016 @ 1:48pm


Posted by @rickys, Jan 14, 2013

I have had sarcoidosis for 18 months. Have not found anything that helps!!


Posted by @lindag2, Jan 14, 2013

I am sorry to hear that. I have gone back to my Dr a polmonolist and he told me that all my test indicated that my sarcoidosis had not flared up and he told me he would not put me on any medication what with all the side effects. Yes I am having problems with my legs and having a funny feeling going up and down my legs but life goes on and I just keep moving.


Posted by @robyncsmith2246, Oct 7, 2012

I am so absolutely exhausted with my Sarcoidosis which has spread through most of my body. Even my bones and nervous system. It's in my lungs, eyes, all lymph nodes, bones, muscles, skin and even some of my nervous system! Through the last 3 yrs. I have been to SO MANY doctors, hospitals, clinics, surgeries, biopsies, tests of ALL KINDS, blood work, ultra sounds, breathing tests, x-rays, CAT scans, MRI's, PET scans, etc....!!! My 3 children have had to stay with my mom and dad for 2 yrs now because I can barely take care of my self! Thankfully my parents are wonderful and only live 2 miles away. I see them as much as I can. I have been picking them up from school so far this year and get to feed them & help them with homework. I just can't be counted on, I just can't function some days. My immune system has been pretty much gone for 3 or 4 yrs now. It gets down to 0.6 sometimes. When I catch a simple cold or another bug, I'm down for 2 to 3 weeks! I'm sorry I made this so long, I really needed to vent. I am familiar with about any medicine known to man unfortunately! I'm 35, married and really need to talk to people who understand where I am at in life right now. My husband is a good man but has NO IDEA how to deal with ANY of my illnesses. He pretty much shut down a couple yrs ago and is EXTREMELY rude and has zero empathy for me or my illnesses! Hopefully I can help one of you out there with advice and would really love to get some feedback from anyone in my situation... I did spend a couple weeks at the Cleveland Clinic in Cleveland, OH back in December 2011. I didn't get all the treatment I feel I needed. It is very much like the Mayo Clinic. It's ranked #1 in the world in a lot of areas. I am thinking about trying out the Mayo Clinic. Please give me some feedback if you have been a patient there. Have a good night and God bless. - Robyn


Posted by @rayrachel, Tue, Mar 22 at 12:33am CDT

I have sarcoid in my lungs and joints, with that being said I would like to know if anyone else is dealing with this as well that can tell me what helps with the joint pain


Posted by @chesneydell1965, Wed, Aug 24 at 12:54pm CDT

Yes we are also but we are new to this as well 9.months into it , life has changed and we have not gotten many answers


Posted by @chesneydell1965, Wed, Aug 24 at 12:55pm CDT

We see pain managment for pain meds but most days these dont help


Posted by @alysebrunella, Tue, Mar 22 at 7:50am CDT

Hi @rayrachel, welcome to Connect. I'm Alyse, and I'm one of the community moderators here. I moved your message to this discussion thread so that you can connect with other community members talking about sarcoidosis. I'm also tagging @stjudemom and @tanyarm who have posted more recently. @tanyarm how is your partner doing?

@rayrachel what have you being doing to date to help the joint pain?


Posted by @rayrachel, Tue, Mar 22 at 9:58am CDT

Methotrexate and mobic but still having lots of pain in my
wrist,hands,fingers,toe,feet,ankles,knees and hips


Posted by @chesneydell1965, Wed, Aug 24 at 12:57pm CDT

My husband isvtakibg the same meds also vicodin and is still in awful pain . We filed for disability and was turned down


Posted by @rickys, Wed, Aug 24 at 1:48pm CDT

I'm starting my 6th year with sarcoidosis . Been to best doctors locally, been to Mayo and have tried all possible meds. Nothing has helped!! Nerves to my eyes are gone. Can barely see . Deaf in one ear. Joint pain. Fatigued . Neuropathy in legs . Abdomen hurts continually. Low grade fever off and on. About the only place clear is my lungs . No sign of it there. A year ago applied and was approved for disability with no problem. Hate to share , but no luck here !!


Posted by @colleenyoung, Wed, Aug 24 at 7:43pm CDT

Thanks for coming back to share on Connect, Ricky! You'll see Connect has changed quite a bit since you last visited. Neuropathy is a huge topic on Connect. You may wish to join this discussion

I'm sure @chesneydell1965 will appreciate hearing from someone who is travelling the path before her/him. Interesting how sarcoidosis has spared your lungs, and it is where the disease started for Chesney.


Posted by @chesneydell1965, Wed, Aug 24 at 1:30pm CDT

Im new in April i was told i have sarcoidosis of the lungs no scaring of the joints and skin. Looking for anwers scard i would like information, who can show a rookie the ropes


Posted by @johnwburns, Thu, Aug 25 at 10:27pm CDT

Sounds awful. Fear however won't help. Maybe you should tell your doctor about how upset you are and get something to help you approach this more calmly.
What treatments have you had and what medications, if any, are you on?
When were you diagnosed and where?
Looks like the usual treatments are immuno suppressants and that the course may be varying or even remitting.

Looks like one of those vague autoimmune conditions that is not well understood.

Hope this helps.


Posted by @alysebrunella, Wed, Aug 24 at 4:06pm CDT

Hi @chesneydell1965. I moved your message to this discussion, so you’re able to connect with others who also have Sarcoidosis. Please meet @sebley12 and @briansr, as well as @ddade19, who has neurosarcoidosis.

@rickys, welcome back to Connect. Sorry to hear about your recent news. Know that the Connect community is here for you.

Does the group have tips or recommendations to share with @chesneydell1965?


Posted by @chesneydell1965, Wed, Aug 24 at 5:20pm CDT

Thank you


Posted by @chesneydell1965, Wed, Aug 24 at 5:22pm CDT

What is neurosarcoidosis


Posted by @colleenyoung, Wed, Aug 24 at 7:39pm CDT

"Neurosarcoidosis is a complication of sarcoidosis, in which inflammation occurs in the brain, spinal cord, and other areas of the nervous system." (From Medline Plus I'm sure @ddade19 can tell you more and what it is like to live with neurosarcoidosis.

Sarcoidosis, on the other hand, is the growth of tiny collections of inflammatory cells (granulomas) in different parts of your body — most commonly the lungs, lymph nodes, eyes and skin. (From Mayo Clinic @rickys @sebley12 and @briansr can tell you more in this department.

Chesneydell - what are your most significant symptoms at the moment, and how are you managing since getting this diagnosis? What are your top questions or concerns at this stage?


Posted by @chesneydell1965, Wed, Aug 24 at 8:14pm CDT

The biggest thing right now is chest pain, heart checked out fine. I have alot of swollen lyphnods in the stomic area, sept 29 i get a endoscopy and a colonostapy til then nothing they can do they say.. second is loss of balance i now use a walker i have cuts scrapes bruises from falling... the 3rd big thing is the nuropathy pain in my feet legs and hands, the next would be sever head aches confussion fatigue.. is this what you ment? My doctors have been zero help


Posted by @colleenyoung, Thu, Aug 25 at 9:36pm CDT

Thanks for sharing these symptoms. You may also be interested in these discussions:
- Anyone here dealing with peripheral neuropathy?
- Falling for no apparent reason

They are not specific to sarcoidosis, but you'll meet members managing similar symptoms.


Posted by @chesneydell1965, Thu, Aug 25 at 9:52pm CDT

Any ideas right now is gold

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