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lindag2

Sarcoidosis

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

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

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alexsimon

Posted by @alexsimon, Aug 29, 2012

Dear Linda.G - Mayo Clinic has some information available at http://www.mayoclinic.org/diseases-conditions/sarcoidosis/home/ovc-20177969 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 http://mayocl.in/1mtmR63.

rickys

Posted by @rickys, Jan 14, 2013

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

chesneydell1965

Posted by @chesneydell1965, Dec 26, 2016

My husband has only found the 1000 mg steroids help but then you can't stay on them

chesneydell1965

Posted by @chesneydell1965, Dec 26, 2016

Steroids is the best but can't stay on them

lindag2

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.

chesneydell1965

Posted by @chesneydell1965, Dec 26, 2016

We are using gabapentin for the legs it kind of helps

robyncsmith2246

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

chesneydell1965

Posted by @chesneydell1965, Dec 26, 2016

We see a great Dr in fort Wayne Indiana John Collins the NEURO center. He is helping us and listening

chesneydell1965

Posted by @chesneydell1965, Dec 26, 2016

Hi I'm Chesney wife Tammi I feel very lost too on how to help my husband

chicagomichelle

Posted by @chicagomichelle, Dec 26, 2016

It's OK to vent Robyn, it's good for you! I have an autoimmune disease and it is hell. I'm to the point where I can take almost nothing. It's so hard and it can sure feel like it has taken your life away. It's good to hear you are able to connect with your kids when you can. My daughter was often the "mom" and as soon as she got her drivers permit, she became the primary driver. Let them help you if you need and don't feel bad about it. I went to Mayo a few months back and wrote about my experience, you can find my story here if you'd like to read it. https://medium.com/@michelledigiacomofitzgerald/mayo-clinic-americas-calcutta-bfd60d9e326#.49yh2rjo4

rayrachel

Posted by @rayrachel, Mar 22, 2016

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

chesneydell1965

Posted by @chesneydell1965, Aug 24, 2016

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

chesneydell1965

Posted by @chesneydell1965, Aug 24, 2016

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

chesneydell1965

Posted by @chesneydell1965, Dec 26, 2016

Steriods

bboxer

Posted by @bboxer, Sat, Jan 14 at 12:18am CDT

walking has been greatly beneficial,, hydrocodone (5 or 10 mg), marijuana (medical otherwise), heating pad. I also have a service dog and by playing with him or grooming him helps take my mind off the pain. I've also taken up some hobbies that also helps distract me.

alysebrunella

Posted by @alysebrunella, Mar 22, 2016

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?

rayrachel

Posted by @rayrachel, Mar 22, 2016

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

chesneydell1965

Posted by @chesneydell1965, Dec 26, 2016

Gabapentin seems to help

chesneydell1965

Posted by @chesneydell1965, Aug 24, 2016

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

rickys

Posted by @rickys, Aug 24, 2016

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 !!

colleenyoung

Posted by @colleenyoung, Aug 24, 2016

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 https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/

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.

chesneydell1965

Posted by @chesneydell1965, Aug 24, 2016

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

johnwburns

Posted by @johnwburns, Aug 25, 2016

Hi,
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.

http://www.mayoclinic.org/diseases-conditions/sarcoidosis/diagnosis-treatment/treatment/txc-20177973

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

Hope this helps.

alysebrunella

Posted by @alysebrunella, Aug 24, 2016

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?

chesneydell1965

Posted by @chesneydell1965, Aug 24, 2016

Thank you

chesneydell1965

Posted by @chesneydell1965, Aug 24, 2016

What is neurosarcoidosis

colleenyoung

Posted by @colleenyoung, Aug 24, 2016

"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 https://medlineplus.gov/ency/article/000720.htm) 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 http://www.mayoclinic.org/diseases-conditions/sarcoidosis/home/ovc-20177969) @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?

chesneydell1965

Posted by @chesneydell1965, Aug 24, 2016

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

colleenyoung

Posted by @colleenyoung, Aug 25, 2016

Thanks for sharing these symptoms. You may also be interested in these discussions:
- Anyone here dealing with peripheral neuropathy? http://mayocl.in/2aWCYXq
- Falling for no apparent reason http://mayocl.in/2bTkbMm

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

chesneydell1965

Posted by @chesneydell1965, Aug 25, 2016

Any ideas right now is gold

chesneydell1965

Posted by @chesneydell1965, Nov 8, 2016

I asked you about thid weeks ago. Thank you so much he fit what you send i got him in to the nuero doc. He us in the hospital tiday being treated . Witj out this site. And my belly aching no one would have checked him

colleenyoung

Posted by @colleenyoung, Nov 8, 2016

You are so right Chesney. What you refer to as "belly aching" can also be called advocating for yourself or your husband. You and he are the most invested in his health. I'm glad that the support you get from Connect members helped give you the strength to advocate for the care you are now getting.

colleenyoung

Posted by @colleenyoung, Nov 7, 2016

Hi @chesneydell1965, I wanted to introduce you to two new members who also have experience with sarcoidosis. Please meet @irene5 and @josephene.

Irene and Josephene, I thought you might appreciate knowing about this ongoing discussion about sarcoidosis.

chesneydell1965 likes this
chesneydell1965

Posted by @chesneydell1965, Nov 8, 2016

Hi ladies im tammi i made this under my hubbys name turns out i use it he dont lol im tammi

josephene

Posted by @josephene, Nov 8, 2016

Having Mac and Sarcoidosis there is still some confusion about which is causing some of my cavitation problem....time will tell I guess. Good luck with your situation. J

irene5

Posted by @irene5, Nov 8, 2016

Hi Josephine. My husband has Sarcoid which we had never heard of until he and a neighbor were both diagnosed with it! Since I have MAC, we have started to wonder if he has MAC as well. So sorry you have both! Irene

chesneydell1965

Posted by @chesneydell1965, Nov 8, 2016

What os MAC ?

colleenyoung

Posted by @colleenyoung, Nov 8, 2016

MAC stands for Mycobacterium Avium Complex Pulmonary Disease. Members are talking about it here: https://connect.mayoclinic.org/discussion/mycobacterium-avium-complex-pulmonary-disease-macmai/

chesneydell1965

Posted by @chesneydell1965, Nov 8, 2016

My husband has both sarcoidosis. And nuerosarcoidosis. I feel very defeated at this point.. i didnt know about nuerosarcoid until i found this blog. And it made sence on how he was acting so we went to see my nuero doct. And here we are im so glad for this blog, it saved my husbands life

dsisko

Posted by @dsisko, Sun, Jan 1 at 8:23pm CDT

I was diagnosed with sarcoidosis over 18 years ago and likely had it for a good ten years before that. I kept telling the doctors I saw that I couldn't breathe and they kept telling me that I didn't have asthma. No, I didn't, I had sarcoidosis which a good pulmonologist diagnosed. We talked about options for treatment and I said I wasn't excited about the side effects of prednisone. He wrote a doctors though out the world about outcomes when a patient takes the drug verses when one doesn't take it at all. After this analysis and the r view of studies, the conclusion was that there was no difference in outcome after 5 years between patients that took prednisone and those that didn't. My doctor and I decided that I would not take any drugs. I frequently went in for lung tests. The disease progressed for a few years and then went into remission. I still struggle with climbing hills, steps, running, and strenuous activity. To this day, however, I am convinced that this was the right course of action for me. It likely is not right for others but it is my experience. An article from the National Institute of Health "Relapse occurred frequently in patients with sarcoidosis who had been treated with corticosteroids, and rarely occurred in patients who had not been treated with corticosteroids in the past. The striking difference in relapse rate between treated and untreated patients suggests that patients with disease that would later be severe and protracted were almost unerringly identified early in their course. One explanation is that severe presenting symptoms portend a protracted and recurrent course; an alternative explanation is that corticosteroids contributed to the prolongation of the disease by delaying resolution. "
I hope this helps.

irene5

Posted by @irene5, Mon, Jan 2 at 4:50pm CDT

When I read this I asked my husband when he became a mayo connect member! Identical situation!

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