Sarcoidosis

Posted by Linda.G @lindag2, Aug 27, 2012

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

Liked by bboxer

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.

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

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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.

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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

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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

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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?

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@alysebrunella

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?

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

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@rayrachel

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

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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

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@rayrachel

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

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

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

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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

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@chesneydell1965

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

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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 !!

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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?

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@alysebrunella

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?

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Thank you

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@alysebrunella

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?

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What is neurosarcoidosis

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