Help with Sarcoidosis

Hi all pretty new to the group, I was diagnosed with Sarcoidosis of the lungs 10 years ago but it has been manageable. Just recently I have had a really bad flare up which has brought up quite a few new problems that I have not yet spoken to gp about.currently back on a short term course of prednisone to help with my breathing along with my normal two inhalers. I feel that this time my mind has been affected and my arms are worse than they have ever been constantly dropping things or burning myself. Has anyone else every been in this situation if so what have you done, I have just moved so waiting for my referral to the hospital too come through to get back under their care. Any help at all would be great never had things so bad for this long although I did have an attack a few months ago and was housebound it only lasted about a week.

4 Replies

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  • Hi, sorry I don't know much about sarcoidosis but I just wanted to say welcome to the forum. Hopefully other members will see your post soon.

  • There don't seem to be many people with sarcoidosis on this site although it is very interesting. I have had sarcoidosis for 37 years but have never had your current symptoms. I would love to know what inhalers you have been prescribed; I only use budesonide inhaler. There are other sites you might like to contact. For instance there is sarcoidosisuk.org/ (used to be called SILA) - I think perhaps this is the first site to look at and there are groups you can join, and there are several Facebook sites for sarcoidosis people such as sarcoidosis support uk.

  • Hello again. I have just looked at the sarcoisosis.org site and they have a Facebook page facebook.com/groups/sarcoid...

  • Sorry to keep coming back to you. I forgot to say, the website of The Royal Brompton Hospital in London which specialises in sarcoidosis (among other lung conditions) says the following. I took Vit D for a year and although I can't be sure it was the cause, my lung sarcoidosis got much worse in that year.

    rbht.nhs.uk/patients/condit...

    Can I take vitamins and supplements?

    You should avoid taking vitamin D, as this vitamin is produced in excess by sarcoid granulomas. Unless osteoporosis is present, we normally recommend also avoiding calcium supplements, although this can be discussed on a case-by-case basis.

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