Yturner I am so sorry for you. I spent 3 weeks in hospital and sill no answers. I stopped as many pills as I am able. I want to make sure these pills are not causing my issues. Ganapentom is great but I was like a zombie. I actually feel pretty good today. I can hope???
Yturner I am so sorry for you. I spent 3 weeks in hospital and sill no answers. I stopped as many pills as I am able. I want to make sure these pills are not causing my issues. Ganapentom is great but I was like a zombie. I actually feel pretty good today. I can hope???
Thank you, I just feel lost, sad and confused. I get so cranky with every one and feel people are making fun of me. I am scared. I even believe my doctor is at a lost but at least this one said he needed to confer with his peers. What else is there?
Terri Martin, Volunteer Mentor | @windwalker | May 2, 2018
@yturner , Hi there. After reading your post, I can see why you are having the feelings that you do. Wish I could give you a hug. I have a cousin with Sarcoidosis; hers remains unchanged and she battles major fatigue. Are you seeing a private practice physician?
I moved this discussion to the Lung Health group as I think you will get more responses here. I found this published study about the frequency of headaches/migraines in sarcoidosis patients: http://journals.sagepub.com/doi/pdf/10.1177/0333102418768037
Unfortunately, fatigue is a common manifestation of sarcoidosis. Recently, the use of neurostimulants has shown promising results in treating chronic fatigue; here's more information for you: http://journals.sagepub.com/doi/full/10.1177/1479972316661926
Is this something you have considered, @yturner?
@yturner , Hi there. After reading your post, I can see why you are having the feelings that you do. Wish I could give you a hug. I have a cousin with Sarcoidosis; hers remains unchanged and she battles major fatigue. Are you seeing a private practice physician?
I moved this discussion to the Lung Health group as I think you will get more responses here. I found this published study about the frequency of headaches/migraines in sarcoidosis patients: http://journals.sagepub.com/doi/pdf/10.1177/0333102418768037
Unfortunately, fatigue is a common manifestation of sarcoidosis. Recently, the use of neurostimulants has shown promising results in treating chronic fatigue; here's more information for you: http://journals.sagepub.com/doi/full/10.1177/1479972316661926
Is this something you have considered, @yturner?
Yes I have been on several different meds to address my fatigue but nothing has worked. My doctor is currently looking into a type of infusion. I was recently told my sarcoidosis is active and has spread to my skin. I thought I had bruises all over my legs and went to the doctor. I was told last week that it is sarcoid. My Dermatologist has suggested Himira. Has anyone ever used this med?
I moved this discussion to the Lung Health group as I think you will get more responses here. I found this published study about the frequency of headaches/migraines in sarcoidosis patients: http://journals.sagepub.com/doi/pdf/10.1177/0333102418768037
Unfortunately, fatigue is a common manifestation of sarcoidosis. Recently, the use of neurostimulants has shown promising results in treating chronic fatigue; here's more information for you: http://journals.sagepub.com/doi/full/10.1177/1479972316661926
Is this something you have considered, @yturner?
@yturner , My cousin with Sarcoidosis takes ridalin to boost her energy. I think she may also have ADD and it helps with that as well. I have her same dr. He put me on adderall. I do have ADD, but it also gives my muscles the strength to move my diaphragm. I have a stiff and flattened diaphragm due to my multi-lung disease situation. I take only .05 mg. and that seems to help with my breathing.
I spoke to my doctor today and my sarcoidosis is active and I was informed that I have new nodules on my lungs. I am still suffering with headaches and with no answers. The sarcoidosis is now on my skin and possibly in nervous system, I am scheduled for a MRI of my brain, neck and spinal cord on the 15th with the possibility of a spinal tap to address these horrible headaches. I have no answers just possibilities laced with new meds. I have just graduated to a third inhaler and possible infusion or Himra. I need to know if anyone has any experience with any of these meds. I am wondering how I will fit it in my life. I am already having a hard time with feeling weak and tired and if any one else is having a problem with a sore stomach or painful defecation.
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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Yturner I am so sorry for you. I spent 3 weeks in hospital and sill no answers. I stopped as many pills as I am able. I want to make sure these pills are not causing my issues. Ganapentom is great but I was like a zombie. I actually feel pretty good today. I can hope???
Thank you, I just feel lost, sad and confused. I get so cranky with every one and feel people are making fun of me. I am scared. I even believe my doctor is at a lost but at least this one said he needed to confer with his peers. What else is there?
@yturner , Hi there. After reading your post, I can see why you are having the feelings that you do. Wish I could give you a hug. I have a cousin with Sarcoidosis; hers remains unchanged and she battles major fatigue. Are you seeing a private practice physician?
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2 ReactionsHi @yturner,
I moved this discussion to the Lung Health group as I think you will get more responses here. I found this published study about the frequency of headaches/migraines in sarcoidosis patients: http://journals.sagepub.com/doi/pdf/10.1177/0333102418768037
Unfortunately, fatigue is a common manifestation of sarcoidosis. Recently, the use of neurostimulants has shown promising results in treating chronic fatigue; here's more information for you: http://journals.sagepub.com/doi/full/10.1177/1479972316661926
Is this something you have considered, @yturner?
Yes I am seeing a private practice physician General and Pulmonary. I hope to learn more on May 7th I have an appointment. Hope to get some answers.
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1 ReactionYes I have been on several different meds to address my fatigue but nothing has worked. My doctor is currently looking into a type of infusion. I was recently told my sarcoidosis is active and has spread to my skin. I thought I had bruises all over my legs and went to the doctor. I was told last week that it is sarcoid. My Dermatologist has suggested Himira. Has anyone ever used this med?
Hi @yturner,
I'm tagging @pfists @helloshelly7969 @marylou705, @barens2, @jay_baruch, @rickys @boomerexpert @jewel8888 as they've mentioned Humira in previous posts. You may also wish to view this discussion on Connect:
- New to Humira https://connect.mayoclinic.org/discussion/new-to-humira/
@yturner , My cousin with Sarcoidosis takes ridalin to boost her energy. I think she may also have ADD and it helps with that as well. I have her same dr. He put me on adderall. I do have ADD, but it also gives my muscles the strength to move my diaphragm. I have a stiff and flattened diaphragm due to my multi-lung disease situation. I take only .05 mg. and that seems to help with my breathing.
I spoke to my doctor today and my sarcoidosis is active and I was informed that I have new nodules on my lungs. I am still suffering with headaches and with no answers. The sarcoidosis is now on my skin and possibly in nervous system, I am scheduled for a MRI of my brain, neck and spinal cord on the 15th with the possibility of a spinal tap to address these horrible headaches. I have no answers just possibilities laced with new meds. I have just graduated to a third inhaler and possible infusion or Himra. I need to know if anyone has any experience with any of these meds. I am wondering how I will fit it in my life. I am already having a hard time with feeling weak and tired and if any one else is having a problem with a sore stomach or painful defecation.
I have similar issues and have recently found a combination of curcumin and boswelia addresses joint pain better than NSAIDS.