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Linda.G
@lindag2

Posts: 2
Joined: Aug 27, 2012

Sarcoidosis

Posted by @lindag2, Aug 27, 2012

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

Liked by bboxer

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Alex Simon
@alexsimon

Posts: 179
Joined: Feb 08, 2011
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.


Ricky S
@rickys

Posts: 3
Joined: Jan 14, 2013
Posted by @rickys, Jan 14, 2013

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


chesneydell1965
@chesneydell1965

Posts: 37
Joined: Aug 24, 2016
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
@chesneydell1965

Posts: 37
Joined: Aug 24, 2016
Posted by @chesneydell1965, Dec 26, 2016

Steroids is the best but can’t stay on them


Linda.G
@lindag2

Posts: 2
Joined: Aug 27, 2012
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
@chesneydell1965

Posts: 37
Joined: Aug 24, 2016
Posted by @chesneydell1965, Dec 26, 2016

We are using gabapentin for the legs it kind of helps


robyncsmith2246
@robyncsmith2246

Posts: 1
Joined: Oct 07, 2012
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
@chesneydell1965

Posts: 37
Joined: Aug 24, 2016
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
@chesneydell1965

Posts: 37
Joined: Aug 24, 2016
Posted by @chesneydell1965, Dec 26, 2016

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


chicagomichelle
@chicagomichelle

Posts: 41
Joined: Dec 15, 2016
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
@rayrachel

Posts: 3
Joined: Mar 22, 2016
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
@chesneydell1965

Posts: 37
Joined: Aug 24, 2016
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
@chesneydell1965

Posts: 37
Joined: Aug 24, 2016
Posted by @chesneydell1965, Aug 24, 2016

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


chesneydell1965
@chesneydell1965

Posts: 37
Joined: Aug 24, 2016
Posted by @chesneydell1965, Dec 26, 2016

Steriods


bboxer
@bboxer

Posts: 16
Joined: Dec 12, 2016
Posted by @bboxer, Sat, Jan 14 12:18am

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.

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