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Welcome to the forum Carol

I am very sorry to hear about your Mum.
There is absolutely no doubt that people are better off steroids if at all possible. The steroids can be life savers and are sometimes an essential part of a medicine cocktail but they risk many serious long term effects so every effort is made these days to have people on them for as short a time at as low a dose as possible
Many of us take immunosuppressants at various doses but as low as possible to get the good effect while reducing any potential risks :
Imuran (azathathioprine), methotrexate and nowadays Cellcept ( MMF) are the most usual ones. Each can have side effects and like all drugs they affect people differently both as to beneficial response, more helpful to some than others, and to side effects. We take them at lower doses than those used for transplants and most of the drastic side effects listed relate to transplant use. We are regularly checked for any hidden effects such as on the blood or organs.
Whatever other drugs are needed to control the disease and deal with symptoms, most people continue to take Plaquenil, sometimes with another anti malarial called mepacrine in the UK. Depending on how lupus is affecting you, this can be a very effective combination for many of the common symptoms of lupus but it doesn't have much of a role to play when there is organ involvement and more powerful meds are needed.

It is rather unusual these days to find people who are only on prednisone after any length of time. I hope your rheumatologist is familiar with lupus cases and is up to date.

It has to be weaned off very slowly to allow the adrenal glands to start producing it again naturally. Sometimes this isn't possible and people need to remain on a low dose

All the best
Clare

All the best
 
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