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

Can you tell me about your experience ? How long you have had it ? Please

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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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@chesneydell1965, we are here and real.

Keep looking to connect with others in the community. You are doing a good job. 🙂 We will also continue to help connect you with other members who are also diagnosed with neurosarcoidosis and here to talk and support each other. New members are coming to the community every day.

@dsisko, Thank you for offering to help with sharing your experiences- That would be great help to @chesnedell1965.@ddade19, we would be grateful for any information you can offer as well. Thank you!!

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8 yrs. Do u have Neurosarcoid

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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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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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No, I now have to take insulin and blood pressure meds my sarcoidosis is active according to my last CT scan. So many test, scans and surgeries but the pain is still here. I am now being told that he may try an infusion since nothing else has worked. I started off with 5 nodules, today I have too many to count on both lungs. Two inhalers 8 pills in the morning and 3 pills at night 2 injections per day. Headaches and pain every where. I just need answers.

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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???

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@oregongirl

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???

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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?

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@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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Hi @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?

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@windwalker

@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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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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@kanaazpereira

Hi @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?

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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?

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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/

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@kanaazpereira

Hi @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?

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@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.

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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.

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