Hi
I am having a terrible exacerbation of all my sle symptoms at the moment and have just received an urgent appointment from the lupus clinic st thomas in a months time.
I have been on 200mg and 400mg plaquinel (alternating days doseages) and prednisilone on and off for 3 years now and arout 20 other drugs to assist with all my other conditions I have.
At the moment, I have extreme pain and swelling in my fingers and wrists, knees and feet as well as the return of the blessed horrible nasal sores, general fatigue and to make it all worse, my reflux/hernia had decided to join in too.
My question is: apart from taking plaquinel and prednisilone, what are the other treatments available in the UK to treat sle? The reason I am asking is because in January when my GP wrote to sle clinic they advised to increase steroids and fax them back if no better (which Im not) and now they have sent an appointment for 1st May thru. My GP thinks that they will probably want to change or add some other medication in and I just wondered what experiences other people had - I dont honestly think that my sle has ever been completely under control and my esr confirms this. It is treble what it was in September when I was on a lower dose of steroids (trying to get off them!).
If anyone has any comments, I would really be pleased to receive them.
As always, thanks in advance for your support.
Hugs to all
Julia x
I am having a terrible exacerbation of all my sle symptoms at the moment and have just received an urgent appointment from the lupus clinic st thomas in a months time.
I have been on 200mg and 400mg plaquinel (alternating days doseages) and prednisilone on and off for 3 years now and arout 20 other drugs to assist with all my other conditions I have.
At the moment, I have extreme pain and swelling in my fingers and wrists, knees and feet as well as the return of the blessed horrible nasal sores, general fatigue and to make it all worse, my reflux/hernia had decided to join in too.
My question is: apart from taking plaquinel and prednisilone, what are the other treatments available in the UK to treat sle? The reason I am asking is because in January when my GP wrote to sle clinic they advised to increase steroids and fax them back if no better (which Im not) and now they have sent an appointment for 1st May thru. My GP thinks that they will probably want to change or add some other medication in and I just wondered what experiences other people had - I dont honestly think that my sle has ever been completely under control and my esr confirms this. It is treble what it was in September when I was on a lower dose of steroids (trying to get off them!).
If anyone has any comments, I would really be pleased to receive them.
As always, thanks in advance for your support.
Hugs to all
Julia x