The Australian Sjögren's Syndrome Association
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Steroids, should I take them?

I live in the UK. I was diagnosed with sjogrens about 4 years ago now but have never really had much of a problem with any dryness. My big problem is fatigue. I can only work part time & don't have much energy for anything else. My Rhumatologist wants me to try steroids but I'm hesitant due to all the side affects. Has anyone else taken them for fatigue? Have they helped?

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Can't comment on steroids but I take hydroxychloroquine 400 per day - helps pain & fatigue.

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Sometimes a Rheumatologist wants to try steroids eg. Prednisolone for a limited time to see if they help. Depending on the effect they have, may determine the next medication which can be implemented. For instance my Rh. wants me to have one week of Pred. If it is effective for eg. joint pain (not sure what) she will start me on Methotrexate.

Like HollyHeski I am currently on Hydroxychloraquine and I believe it has helped my fatigue significantly.

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Typo - Hydroxychloroquine. Typing in car doesn't help!

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Prednisone is one of those drugs you love to hate. It works for inflammation, pain, tiredness, etc. But it does have some side effects. At higher doses, it stops me from sleeping, and over about 25 mg per day it will cause me to gain weight.

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I am also in UK. I have had many courses of steroids over a lifetime - most recently about 5 weeks ago at high dose of 40mg for five days. It made me very jumpy and I was already suffering from tremors but was put on it for my airways.

Longer courses at much lower doses have made me feel pretty much normal. But it’s not good to take it long term at all. I

The fatigue is awful I know but if your diagnosis of SS is absolutely firm then I’m not sure why they would offer you steroids rather than Hydroxichloraquine or other DMARDs?

The vascular doctor I see sometimes at the Connective Tissue Disease clinic explained that Sjögren’s fatigue is unique as it’s caused by high viscosity of blood rather than inflammation so there’s very little can be done for it.

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I went to a Naturopath M.D. about fatigue. He did some extra blood tests and recommended starting with increasing my Vitamin D to at least double recommended doses. And gave me an Rx for a low dose Liothyronine to increase my Thyroid levels as well as a Testosterone cream. I've had no side effects. My fatigue is noticeably diminished though I still have some. Other doctors wouldn't give me these prescriptions as my levels were "low normal". He said he doesn't believe anyone should be lower than normal. :) Not a doctor but these sound less scary than steroids.

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