Spinal Sarcoidosis

I have had pulmonary sarcoidosis for 27 years. It has also been diagnosed in my liver and pituitary gland. Within the past few years a rheum doctor said that I had sarcoid arthritis. I have much neck and back pain, and the MRIs show disk degeneration and bulging. How can you tell if the spinal arthritis and other symptoms are caused by the sarcoidosis, and what can be done about it?

Report post

12 replies. Join the discussion

That's a very good question. I have osteoarthritis in my spine and many joints throughout my body. It showed up initially back in 2003 when I had to have excess calcium scraped off my left ankle as the ligaments on either side of my foot were swollen. It's been bothering me again and I think I'll have to have it done again.

I have constant back pain too. I did have spinal fusion 4 years ago, but still have associated pain.

Report post

An MRI revealed multiple lesions / tumors throughout my vertebrae - limited to the vertebral bodies. The appearance on the MRI mimicked metastatic disease and multiple myeloma. Biopy revealed that they were granulomas and it is sarcoid in the bone. This is different than neurosarc which effects the spinal cord and nervous system. I've read that the two really don't overlap.

But to the point, my sarc manifested in tumors / lesions of the bone, not in a generalized "arthritic" or "degenerative" process. Though the bone lesions do hurt and cause inflammation in surrounding tissue. Tapered down to 10 mg of pred, pred therapy approaching 6 months. Dramatic improvement in my symptoms - go for imaging in a couple of weeks to see if lesions themselves have been reduced or improved.

Report post

Thank You. I will get a biopsy of my spine from my ortho surgeon.

Report post

Funny that i also got degenerative disk disease and they try saying it is not sarc and today i saw a physiotherapist with problems with neck upper spine, to be told i have a hard lump on the top of spine /bottom neck, that also has fits of bulging out. i think we as the patients therefor the experts should retrain these doctors lol good luck.

Report post

Yes, we patients are the experts. I have been my own primary care physician for many years. Am not a doctor but I know more about sarcoidosis than all but a few of them. Some MDs cannot handle that concept. I learned to avoid them and work only with those willing to accept a patient's knoweledge. Thanks for wishing me luck.

Report post

I have had sarc for quite a while now. Now that I think of it, my back did start up right after I was dx. I too have three bulging disc and degenerating bone disease. I remember when my gp said i had the arthritis and I guess I was releived because I for some reason did not think it was serious. Now I can hardly walk. I had a body scan and the ortho said he would not touch my back. I don't know why. It seems funny that my dx and my back started around the same time. I don't think I will actually be tested again because I know there is nothing that will help it. I currently on a regime of pain meds that would make most people a zombie. I don't know what else to do.

Report post

To yankeebritt09

Every medical problem that you encounter must be seen through the lens of sarcoidosis. My instinct says that you do have sarc in your spine. A gp would know nothing about this and misdiagnose it as simple arthritis. Try to get a rheum doctor to verify the spinal sarcoidosis, and then get treatment for it.

Report post

I too have deg dics dis and had a discectomy and spinal fusion at c6 c7 level. Have spinal stenosis or now wondering if that might be sarcoid. Who knows with us and usually the drs don't know or care. Good luck to all.

Report post

I was diagnosed with Spondylosis of my neck which causes numbness in my finger tips along with severe pain in my neck and shoulder muscles. Physical therapy made it worse. I also have lesions in my right shoulder. The orthopedic surgeon wants to scope it out after 2 shots of cortisone failed. Reading this post makes me wonder if these are sarc related. I have had sarc for nearly 30 years. I am in my late 50's and the doctors keep telling me these are age related problems. If that is the case it makes me fear what I will be like in 10 years.

Report post

Your spondylosis is almost certainly related, if not outright caused, by your sarcoid. The displacement in your neck vertebrae caused by granuloma formulation can cause the veterbrae to expand, constricting nerve function and impinging on the spinal cord. Some of the symptoms can also be age related, but sarcoidosis hastens the process. All this occurs without any large amount of inflammation.

Report post

Thank you for your insight. It looks like we have had sarc around the same amount of time so you would be a good gage for me. I have terrible pain and weakness in my calves, thighs and buttocks as well as bone spur formation in my knuckles and some joints in my hands. My hands are also painful and weaker. It hurts to grip the steering wheel. My sarc was "inactive" for many years but I fear it was wreaking havoc in my body without my knowledge during that time and now I am dealing with the ramifications. I have never been given medication other than an inhaler and steroidal eye drops as it never appeared "bad" enough to treat according to my health care providers. It looks like I need to find a good sarcoidosis center where the doctors know what to look for and how to best treat it. I started a discussion on this site yesterday asking for feedback with what I think is muscular sarc. I hope to get some ideas for my next step. Thanks again this discussion has been enlightening.

Report post

Our problems are quite similar. Rheumatologists have verified sarcoid arthritis and my knuckles have noticeable displacement damage. I don't think that your sarc has ever been inactive. Unskilled doctors mistakenly equate sarcoid activity with inflammation. My experience tells me that inflammation is to acute sarcoid attacks as displacement is to chronic attacks. These chronic attacks leave little telltale inflammation. It sounds like you have had long term, at least 20 years, of ongoing chronic sarcoidosis of you muscloskeletal system. You are in good company as the same has been happening to me. Can you get to John Hopkins? I go there exclusively as all of my tests must be considered through the lens of sarcoidosis. A rheumatologist with real experience in treating sarcoid arthritis would help you greatly. But you have to act as you own primary care physician and evaluate the true capabilities of these doctors.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Things you can do

Support FSR

Help the Foundation for Sarcoidosis Research reach its goals and support people like yourself by making a donation today.

Donate to the Foundation for Sarcoidosis Research

Discussion topics

Help and information from FSR

Sarcoidosis and the Body
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.

You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.

Community leaders