Sarcoidosis lesions of granulomas in their vertebrae bone marrow

Hi @hereandnear, I expanded the title of your topic to reflect the specific question you have and am tagging others like @tammyak22 @jsjaast @sharonp51 @ryman @yturner @martindale @shani @rj4group @ess77 @dsisko @jeanne5009 who live with sarcoidosis. In fact, Tammy just posted this discussion that may be related:
- Sarcoidosis pain: Does anyone experience all over pain on their skin?https://connect.mayoclinic.org/discussion/sarcoidosis-pain/

Did your doctor explain how the medications would be high risk? Which meds?

My docs suggested not taking medication for sarcoidosis , because it had side effects outweighing benefits. I know it may not sound empathetic where you stand now, but learn to manage pain using more holistic ways, keep busy with living positively and productively. I have amassed 5 autoimmune diseases now, raised two kids and worked full time since being diagnosed 40years ago. It wasn’t ever easy but the alternative was never an option, so just do it! I was blessed with supportive docs, friends and family. I’ve never regretted doing any of it.

And if I may add a PS? Read through all the mail of your interest on Mayo Connect…it is a treasure trove of helpful information, support when you think you are going through this ‘’stuff’’ alone…you aren’t!…and then don’t be shy about posting or asking for clarification or help navigating a new problem.

I looked to see if I wrote this reply as it reflects my experience as well. Have had sarcoidosis since 1995 and have never taken medicine for it (with the exception of an occasional inhaler). Get exercise, maintain your weight, keep busy living.

Really uplifting to know there are others who are doing well. I think the initial key to success is having excellent docs who treat each patient as an individual based on test results.

@dsisko, @shani, and all...Dsisko, you are surely blessed. I've written my story in a prior message, but I'll simply say I didn't have the illness nor the life you enjoyed with Sarcoidosis.

I was diagnosed in 1987 at Mayo Florida with a lung biopsy. I was treated by a wonderful Rheumatologist and Dermatologist, treating the lung Sarcoid and the large, painful, yucky nodules on my shins. I'd been ill for months with increasing difficulty functioning, due to the body pain that didn't respond to anything from docs to that point, fibromyalgia that increased all the symptoms of the sarcoid, and much more. My feet and legs were so swollen I couldn't wear shoes, making it very tough to walk and certainly impairing my working ability. I couldn't sleep due to pain and other discomforts. I was coughing constantly, and so much more...

After the biopsy, I was on high doses of Prednisone for 8 months, when I began to show neurological issues caused by the med. That hard smack with Prednisone put the sarcoid into remission, for a while. It came back in some form every few years or so, treated with low doses of Prednisone usually, antibiotics, and an inhaler. I functioned, worked in retirement communities in our city in administration, and even opened and ran my own gift shop for 10 years while raising a small child as a divorced woman. I had a very tough time managing and leading a life with some kind of normalcy, whatever that may be.

It was a very hard life, but I did it. I survived and my son went to college, and law school and became an excellent lawyer with his own practice. But, I was never able to lead a 'normal' life, as I was in constant pain, had multiple additional illnesses, several autoimmune illnesses, lost my balance, and used a cane beginning in my 50s. Life with Sarcoid and after heavy steroids was difficult.

The steroids caused many additional issues throughout my life and today. But, they put the Sarcoid in remission. I was better, able to live life and raise a child. I pushed through so many hard days to make it and am very proud of my inner strength and determination that got me to Mayo again, in 2019, after several bad years falsely diagnosed with MS.

Now, let me tell you I'm better now than in all those years, due to Mayo Clinic and my Connect friends and the knowledge gained from them. So many wonderful folks with so many challenges and so much love for each other. How could I not be better?

I have many more limitations now than I want, but at age 76, I can still walk, don't have MS, do have Parkinsonism and some tremors, have an occasional Sarcoid issue...currently have rash issues with nodules and deep pain, burning on both arms, shins. Have low ferritin issues that cause a lot of problems for me daily, but I'm dealing with whatever comes along.

I have excellent care at Mayo, from a wonderful team of caring, kind staff and physicians, and I often make the trip to the Clinic an outing I enjoy, most of the time. The campus is lovely. Beautiful live oak trees, palms, fresh flowers year round, lovely ponds and fountains. The art is fantastic. The smiles are contagious. I get exercise when able by walking the halls with my walker, corridors connecting the buildings lined with walls of glass, and art that brings me joy. Add good music and God's guidance and peace, and I'm a much better person now.

We with Sarcoid have very individual experiences. I'm blessed to have gotten the lungs under some kind of control, at least for years. My immune system is a mess. No dementia yet. Pain, yes. Unbearable? No! I'm off all the meds doctors outside Mayo put me on for so many years...Gabapentin, Oxycodone, Lyrica, heavy Ibuprofen, and others.

I take Cymbalta for fibromyalgia and anxiety which works well for me. Robaxin as a muscle relaxant. Requip for RLS. Use a Bi-pap with O2 at night, Prazosin for PTSD nightmares, and a few others. No heavy pain meds for years. I use medical marijuana tincture at night for anxiety and pain relief. It's 1x1, CBDxTHC. It works wonders.

I'm a happy, older woman who can still climb her 14 stairs to get to the bedrooms and showers. I also have a little mini kitchen set up in one bedroom so on the days I'm not able or don't choose to go downstairs, or just want some yogurt and granola for breakfast upstairs, that has made my life much easier and more enjoyable. I have options. I'm not physically healthy, but I can still look good, dress up and go out at times and enjoy this beautiful world.

Be well, be blessed, and enjoy the friends you meet on this helpful, encouraging site. It will help you with acceptance of your body, and your situation. You'll learn so much from others who've met your challenges. And, perhaps you can pass it on to someone who needs the uplifting words to know she's not alone in this crazy journey. elizabeth

Hello Elizabeh
Sounds like you have dealt with this disease process for a long time. And your attitude is very much like my own. You learn to live with the disease and do all the things that help. I have had Crest since 2001
Rheumatologist told me that Crest will not kill me up will make my life difficult
And yes it has but you accept it and move on. Good to connect with others who understand. It makes a huge difference. Thank you

@ess77 I’ve been away from Connect for several months due to health issues and i really missed your positive outlook. You are so strong!
Can I ask how your son is doing?

@becsbuddy and all...Hello, my friend. It's wonderful to get your message and reconnect. I've missed you and everyone as I, too, have been involved with my own health issues and my son's critical issues that there's been no time, energy nor inclination to chat with anyone. At all! Last year was horrific. The worst year of my life.

In November my son had a crisis and I truly thought neither of us would make it through the year. When 2023 hit the scene, I prayed with a heart filled with gratitude and the knowledge we were coming through and would see the light. I knew, and know, this year will be much better. It's already brought new help for us both in many areas. As we take each day, each moment, and squeeze what joy is available, we give thanks and take the next step. So, I'm sort of back...

I'm sorry you've had more problems. You've dealt with so much for a long time as I recall and I've grown to love your input, your 'smiles', and your good thoughts. You are a welcome sight in my email!

My son's been through hell and I didn't think he was going to make it to 2023. He was on a ventilator for 3 days after being given Ketamine pushed when taken in rescue to the hospital after having days of seizures and rages. The attendants were told he had a Dilaudid pump but gave him that horrid drug anyway. His heart stopped, and he was revived and on CPR until the ER put him on a ventilator. I didn't know anything about this, couldn't find him where he was taken even, for 2 days! It was a nightmare...when I saw him on the vent I almost collapsed and that was only the start of the worst months of our lives.

Since then, he's been hospitalized 2X for emergencies. I've been at the ER 3X for lung infections and UTIs out of control. Sarcoid is back a bit, but I'm actually handling it well. I have a rash and pain/burning/weakness in my right arm and hand, my left arm has a rash, and my feet and ankles are worse, with a rash on both legs/shins. I'm using a steroid cream on these areas and it's working well. I use it for 2 weeks, off for 2, and so on as needed. This is a good solution. Nothing internally. And, it's helping with all symptoms.

My lungs are pretty good, just normal phlegm and junk, but I use a steroid in my xylitol sinus rinse every night and it seems to keep it controlled. I'm using 2L of oxygen with my bi-pap nightly which makes a huge difference. And, I'm taking CBD gummies at night for sleep and a different one in the daytime if I need it for anxiety. All in all, I'm holding my own.

I have low ferritin levels again, Becky. It seems my body can't absorb ferritin or B12, so I give myself B12 shots weekly and get ferritin IV infusions every few months as needed. It's getting low now, my gums are white and lower energy with more weakness, but with rest, I'm doing pretty well. Rest is very real at this point. This week, after going with my son to Gainesville last week for his movement disorder clinic visit, I've had a pretty slow time of it. Those 2 days of travel and docs took it out of me, so I've been feeding my birds, and enjoying YouTube videos with make-up tutorials for women over 70, and 80...What a silly thing to enjoy but I feel like a young lady again with the new tips for my new age. It's been fun. Isolating, but for the phone and my son, but I needed the fun and total rest. A good thing.

I'm truly thankful for you and this site. You've walked with me through so many hills and valleys over the last few years. I appreciate you and all the other Connect friends. What a gift for us to have the support of folks who truly get it. No judgment, real acceptance, and guidance to acceptance of our lives, situations, and bodies as they are. Growth. I'm truly a better person today than I have ever been. God has lifted me up and guided me to folks who would listen, hear, and help. Mayo, you and Connect, and others. I'm full of gratitude on this day.

It's 4 a.m. Friday morning. I've been at this far too long! Suppose I'll hit the bed for a few hours before meeting the sun.
Be well, Be blessed. Stay in touch. Elizabeth