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

@rickys

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

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

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@lindag2

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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We are using gabapentin for the legs it kind of helps

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@robyncsmith2246

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

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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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Steriods

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@rickys

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

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Steroids is the best but can’t stay on them

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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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Gabapentin seems to help

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@robyncsmith2246

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

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@robyncsmith2246

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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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

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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.

Liked by Jamie Olson, lacey

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@dsisko, Hello and welcome to Mayo Clinic connect!

Thank you for sharing your story. I would like to connect you with @chesneydell1965, @rickys and @johnwburns. I hope you can relate and support each other with your similar sarcoidosis diagnosis. There is nothing like having support coming from someone who has gone or is going through a similar journey. That is what our Mayo Clinic Connect community is all about.

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@jamienolson

@dsisko, Hello and welcome to Mayo Clinic connect!

Thank you for sharing your story. I would like to connect you with @chesneydell1965, @rickys and @johnwburns. I hope you can relate and support each other with your similar sarcoidosis diagnosis. There is nothing like having support coming from someone who has gone or is going through a similar journey. That is what our Mayo Clinic Connect community is all about.

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No one really answers am I doing something wrong or is this computer generated and not real

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@dsisko

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.

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

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@jamienolson

@dsisko, Hello and welcome to Mayo Clinic connect!

Thank you for sharing your story. I would like to connect you with @chesneydell1965, @rickys and @johnwburns. I hope you can relate and support each other with your similar sarcoidosis diagnosis. There is nothing like having support coming from someone who has gone or is going through a similar journey. That is what our Mayo Clinic Connect community is all about.

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Certainly. I know my limitations now and live life quite fully. I’d be happy to help with my story and experiences if it would be helpful to others.

Liked by Jamie Olson

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Does anyone here have neurosarcoidosis

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I have Neurosarcoid

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