Sarcoidosis Treatment: Tips for an effective path to better health

@becsbuddy, @shani, and all...For some reason, I followed your line of messages from today's notifications to this line of chat. I want to ck in with Becky anyway, so I'm sending you a special friend notice! Hope all is well and you're perking along. The Sarcoid is quiet at the moment. My lungs are better in some ways, but worse in others. Asthma is far worse now. I'm on oxygen at night with the bi-pap and it's such a great improvement for me. My sleeping is so much improved due to this change.

I'm also no longer using the 1:1 marijuana tincture before bed. I don't want to spend the $250 every couple of months to visit the doctor for a prescription up-take. And, the drugs are very expensive...my retirement years are longer than I expected or planned....so, I've found something that does a better job!

One day I was playing around on my laptop and found a lovely make-up fashion site for gray hair, for those she calls the ferocious woman, the older woman with naturally gray hair. It's Nikol Johnson, a model, and career-long make-up artist and cosmetologist. I really had fun changing some things in my make-up and colors since my hair is now silver with some black left in the back. Changes my inner attitude, my inner self. I really enjoy this and it's awakened part of me that was on hold...the making the best of myself no matter how the body says no.
Being pretty again, such as it is.

She recommended a woman-owned company, Winged Wellness, that's designed to help us as we age with post-menopausal symptoms, other types of discomfort and pain, anxiety, and such...it has products with CBD with herbs and such. I now take a couple of CBD and herbal gummies. They do the job fine. I also take something they call Relief. I tried a small amount and it worked so well that I use it daily now. It's wonderful!!!! It has no marijuana at all. It's made up of herbs and spices, curcumin, aswandwa???, and other goodies. Things I'd heard of but never taken seriously.

This capsule is better than the prescription meds I took for pain and discomfort for decades! I can truly have relief without the side effects, no foggy brain, etc. It's a miracle in my life. I'm thrilled and having much better days. The Sarcoid pain, bones issues, great help for arthritis. My comfort level is so much better now, it's truly amazing.

I'm passing this along to all of you friends with daily and frequent pain. It's changed my daily activity level. I still rest most of the day, off and on and sometimes more on, but I have good relief now for the first time in decades.

I'm 76 now. For the first time since Sarcoid diagnosis at 40, I'm working with an endocrinologist addressing my bone issues added to by decades of steroid use. Another thrilling improvement. I kind of feel like I'm too old for these improvements, but I'll take it! I may begin having an annual Reclast infusion. Along with my iron infusions every few months, and so on...addressing the bone damage from early, 35 years old, osteoporosis, and worsening
bloodwork numbers. I see a new hematologist Wednesday for the numbers regarding iron/ferritin issues. All good things from Mayo Florida. I'm so thankful for that group of doctors and staff that have lengthened and improved my life drastically. I hope and pray for all of you to find the same. Blessings all, Elizabeth

Who makes the Relief drug and where can I get it?

@blossomgirl and all...Hello, Blossom. I purchase the Relief pain supplement online
at Winged Wellness. As I mentioned, this company is a pleasure to work with, have specific items for women's health, of all ages and so far, the ones I tried, worked quite well.
I hope you find relief here. Blessings, elizabeth

What dose of prednisone and cellcept were you on? Also, im suppose to be starting Humira, but am very sceptical and unfavorable about this drug due to what it's made of. Have you ever been on Humira?

@blossomgirl, and all...Blossom, why are you considering Prednisone and Cellcept? Are you currently in a flare for Sarcoid? The only thing that ever helped calm a flare for me was Prednisone. Never tried Cellcept. When I was 40, 36 years ago, the only medication offered was Prednisone. I think that was all they had then to treat Sarcoid. In my case, I was quite ill with serious whole-body pain, lung involvement with constant coughing, phlegm, swollen feet, and legs, lesions on my shins and ankles, bad headaches, body pain, and more. It was tough. My diagnosis was at Mayo Florida, which just opened, a lung biopsy. treatment with heavy bombardment with prednisone for about 9 months, then slow, graual tapering. I believe this treatment with lots of prayers and a special healing service put the Sarcoid in remission. I've had small lung flares through the years with a lot of bronchitis and pneumonia, and such, but few real Sarcoid-only flares. I do have some crackled glass on lung x-rays, and now have worsening asthma and brachiametosis???, use a bi-pap with oxygen nightly, but feel blessed to be perking along. I do have other auto-immune illnesses but all in all, I'm happy to be here and able to function.

Have you been to the Sarcoidosis site on Connect? It's full of good folks who've had varied experiences with this illness. Suggest you try it out and see what you think. You may get some really good experienced advice and a bunch of support. I'll see you there at times, as well.

I was on multiple and several prescription medications through the years for body pain. I worked with my doctor to wean myself off all the pain-related meds, and just last month found the Relief I mentioned. I love the ingredients...as my hematologist said yesterday when I showed him the bottle, as I do with supplements I take so the doctors can know what I'm doing and my thoughts AND perhaps learn about a new product to help patients. He said Relief has every known anti-inflammatory herb or spice known to man...and it has CBD and CBG. Good things to fight my body pain.

Be blessings, elizabeth

I was diagnosed with sarcoidosis in 2020. It affected my spleen and skin. Spleen was removed. So far the skin areas seem to be inactive at this time. Fatigue is constant. I've made up my mind that I am not going to give in to it. I do rest for 15-30 minutes when I feel extreme exhaustion. It helps. While resting I meditate.
I am a stage 4 cancer survivor and dealt with fatigue at that time too. My oncologist suggested at that time no matter how I felt to keep moving. There were many days when all I could do was walk around the dining room table holding onto chairs. On my better days I would walk outside around my yard. Thus, I continue to "fight " through the fatigue with sarcoidosis.
Yes having sarcoidosis is challenging. It has changed my lifestyle. I retired earlier than I expected, found new hobbies to keep me busy on days that energy is very low. Depression can easily overcome me too. However, I have choices. I can let fatigue, depression, lifestyle changes, run my life OR I can explore new areas that I would enhance my current situation. I chose to explore.

@ess77 it’s wonderful to hear that you are doing so well! I’m doing OK. We’re at the airport in Boston now waiting for our flight home. Spent a few days on Cape Cod with Mike’s sister. Now I’m exhausted and ready to be home! Take care, Elisabeth. Becky

@becsbuddy, and all...Sounds like you've had a delightful respite. I'm happy you had this time away and a good time with your family. It stings a bit when I sit in my recliner or hibernate most of the time. I'm doing better in many ways, Becky. Worse in others.

Now, I'm having back and full-body pain. I spent yesterday on my patio cleaning and filling feeders, pruning some damaged dead leaves-nothing big or heavy work..., and spraying to deter rats along the fence and walls/doors/windows/cables, etc. I obviously overdid, but doggone it, it needed to be done, was a cool lovely day. I enjoyed most of it. I should have stopped an hour sooner, but...

Oh, I know what I did! Oops. There were 10 bags of sand from last year's hurricane season to protect my condo from flooding. The handyman put them outside the fence under shrubs. So I, in my glorious wisdom, decided they had to be emptied and used around the shrubs/fence/plants to help with drainage. I added river rock and granite chips to create a drainage barrier. And, I wanted to clean up the area as it was unsightly. So, I emptied all the heavy bags. Nuts!

My mid and lower back are seizing in pain. I was up all night in pain in every joint and muscle. I had a sinus headache from the mold and mildew on the patio and in the sand. So, dumb, shortsighted, and nuts.

I was at Mayo all day Wednesday from 8 a.m. beginning with hematology, then several hours with a nuclear full body scan. I could barely walk, with my pink walker, out the door, to my car... I was so exhausted. Literally. Tiny steps, bent over, exhausted. Got home and went to bed.

So, yesterday, I did the patio thing. I'm paying for it. Hope all improves and I can walk later today. I'm using steroid cream on my back, taking my Relief capsules, and resting.

Lesson for everyone on this site-we are much more fragile than we believe or accept. I've fought that concept for decades, pushing through to get things done and prove I'm able when I'm not. Typical of autoimmune patients. We refuse to allow our bodies to be ill, we fight rest. Thought I'd moved past that, but nope. So, my dear Becky, I'm paying the price.

The body scan confirmed Paget's Disease of the skull and a bunch of bone deterioration. Dates back to severe osteoporosis at 35 with unknown cause, no treatment but oral calcium. The endocrinologist I saw last week thinks it's due to celiac disease that didn't have a name then. I'll probably get an annual Reclast IV infusion. The hematologist is prescribing regular iron IV infusions when bloodwork shows ferritin level is lower and profile numbers high, every 3-4 months. So, darn it, let's fix it even if we can't fix the cause. Finally, action.

We're having strange weather here. Yesterday it was so cool, really cool all day and chilly after dark. Crazy! I've lived in northern Florida for 62 years and never had this cool weather, it's almost June. Incredible.

Enjoy home and rest well. Welcome the rest. Blessings. Elizabeth

Which product on this page?

Thanks.