How has your medication regimen (plaq, steroids, etc) evolved over time?

[NeelPNeelP]

I know many of you are tired and may be fatigued. However, I think it would be very helpful for me and others to get a sense of how the medicines you've taken have evolved over time so that there is a better sense of the disease's path. (i.e. most everyone starts with plaquenil+symptomatic therapy for example but quite a few go on to steroids, cellcept, azathioprine, rituxan, etc).

For example:

1). Initially just plaquenil and symptomatic therapy for eyes.

----------All well for 1 years

2). For flares, steroids at 60g.

---------All well for 2 months

3). Started cellcept along with tapering steroids course plus symptomatic therapy.

Cheers!

[Hidden]

Hi there. Just to help avoid any confusion for those who might not understand - most of us using Lupus UK HU are from the UK and here we tend to use generic titles rather than brand names as you are mostly using here.

So this would be Hydroxichloraquine (Plaquenil), Methotrexate (same), Azathioprine (Imuran), Mycophenolate (Cellcept) and Rituximab (Rituxan). Also we say Prednisolone rather than Prednisone.

In answer to your question - I have Sjögren's rather than Lupus but they are sister diseases so I will just say that for me things keep changing slowly - so that one manifestation of active disease subsides where another shows up or worsens.

Some people also go on to develop extreme sensitivity to pain - known as Fibromyalgia where others go into full remission. In my case it's just a rather relentless cycle of systemic symptoms, particularly myofascial pain and fatigue. But then this is the nature of Sjögren's - it tends to worsen with age whereas for some, Lupus improves during or after menopause. And although I'm on the maximum dosage of Mycophenolate I can't say I notice much improvement overall. But I'm hoping to embark on a PhD relating to invisible illness so it's not all doom and gloom!