Hi lupo,
Welcome to the forum:welcome:
I'm sorry about your diagnosis and that you are still struggling.
The first thing that jumps out at me is that your azathioprine dose is very low. If you are still having a lot of symptoms, an increase in dose seems a logical thing to try. The dose is typically 150mg, less if you are very small or only having realtively mild symptoms. You've only recently gotten to the time frame where you can expect that the plaquenil has reached maximum effect. Since it works slowly, it is easy to not really notice the improvement it gives, but if you were to stop it you'd probably realise how much it had really been helping.
What symptoms are you having? How are your blood tests at the moment?
Unfortunately fatigue is one of the least treatable of all SLE symptoms, and one of the least understood by doctors. There are a few things you should aim for - getting regular exercise (even if it is just a gentle stroll), getting daily social contact, and treating depression. Aside from these things, there is a degree to which you need to accept and adapt to your limitations.
I have pretty good disease control at the moment - good bloods and mostly mild symptoms, yet I certainly can't function normally - getting up at 10am is early for me, and most days I need a nap overday if I do have to be up early. An 8 hour work day is only possible for me if I slit it in two and sleep in between. If I stick to those limitations and don't push beyond them, I cope pretty well, but if I don't then my lupus symptoms get worse.
I'm sure other people will be along too to share their experiences of coping, and what for them is acceptable and not.
Hang in there,
X C X
Welcome to the forum:welcome:
I'm sorry about your diagnosis and that you are still struggling.
The first thing that jumps out at me is that your azathioprine dose is very low. If you are still having a lot of symptoms, an increase in dose seems a logical thing to try. The dose is typically 150mg, less if you are very small or only having realtively mild symptoms. You've only recently gotten to the time frame where you can expect that the plaquenil has reached maximum effect. Since it works slowly, it is easy to not really notice the improvement it gives, but if you were to stop it you'd probably realise how much it had really been helping.
What symptoms are you having? How are your blood tests at the moment?
Unfortunately fatigue is one of the least treatable of all SLE symptoms, and one of the least understood by doctors. There are a few things you should aim for - getting regular exercise (even if it is just a gentle stroll), getting daily social contact, and treating depression. Aside from these things, there is a degree to which you need to accept and adapt to your limitations.
I have pretty good disease control at the moment - good bloods and mostly mild symptoms, yet I certainly can't function normally - getting up at 10am is early for me, and most days I need a nap overday if I do have to be up early. An 8 hour work day is only possible for me if I slit it in two and sleep in between. If I stick to those limitations and don't push beyond them, I cope pretty well, but if I don't then my lupus symptoms get worse.
I'm sure other people will be along too to share their experiences of coping, and what for them is acceptable and not.
Hang in there,
X C X