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Sarcoïdosis - diagnosed today on top of Tuberculosis

conventgirl profile image
9 Replies

Any fellow sufferers?

I have gone from 5mg steroids to 80mgs

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conventgirl
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9 Replies
sassy59 profile image
sassy59

Hi conventgirl, having sarcoidosis and tb isn’t nice. The two are on parallel with one another.

My husband was diagnosed with sarcoidosis in 1991 and also had other health problems including COPD. He started on 30mg of steroid and is now down to 10mg.

Please be aware that a high dose of steroid can result in osteoporosis so make sure you have regular checkups.

BLF have a brochure on sarcoidosis so you can request they send you one. Good luck to you. Xxxx

Linnie13 profile image
Linnie13 in reply tosassy59

Make sure you get calcium tablets off doctor I'm on two 500mg of caliche with D3 a day

conventgirl profile image
conventgirl in reply toLinnie13

Thank you xx

Linnie13 profile image
Linnie13 in reply toconventgirl

That was calcichew

conventgirl profile image
conventgirl in reply toLinnie13

Thank you but more concerned about 80 NHS steroids daily x

conventgirl profile image
conventgirl in reply tosassy59

Thank you x

Thomac profile image
Thomac in reply toconventgirl

Calcium and vit D is not recommended for Sarcoid patients Check with your specialist before taking.

judg69 profile image
judg69

Hi conventgirl, I second the concerns about about such a high level steroids on a daily basis. While not a Dr, I can forcefully advise you to discuss stepping down gradually asap with your Dr. Steroids have a place and can be lifesaving, but quite literally they can also make you sicker and lead to one's demise. Nothing but all the best Wishes to you! judg69

conventgirl profile image
conventgirl in reply tojudg69

Thank you - Osteoporosis’s is a major side effect and additional concern

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