flare just not going even though increased steroids....

[tiredmum]

Do you remember that beautiful weekend 3 weeks ago when a lot of us lupies began to suffer?

Well after 10 days on the settee enough was enough, so i rang the docs who put me on a course of steroids over the phone. After a few days I picked up no end, two days later i was even worse than i was before. I had done this previously so wasn't too concerned but after a few more days I rung the docs again who increased my steroids over the phone.

I must admit i do feel better in myself - but that is only whilst I am sat on my bum !!!!

I can't walk more than 10 metres without thinking i'm going to collapse or throw up. My body shakes if i try to do anything. I have to sit down to cook the dinner or do the washing up. i've hardly been out the house for the last 3 weeks and i haven't even been able to go for my routine blood tests as i am so physically exhausted.

I just expected a bit more improvement after all this time, perhaps I am just being impatient.

[nanny4]

Hi there,maybe you need to visit your g.p,i would have thought you should feel a lot better by now.

My daughter went to the doctors today and he says she has a chest infection,she was on 6 steroids a day for bad skin break out,now he has uped her steroids to 12 a day and 4000 mg of antibiotics s day,she will feel sick and be rageing on those tablets.

I do hope you feel much better soon,take care,Sandy.

[tiredmum]

Hi Sandy,

i did ring the docs today and they want to see me to have some blood tests, they think it could be the mycophenolate mofitil.

your daughters meds sound horrendous, i really hope she feels better soon.

[nanny4 in reply to tiredmum]

Glad you rang the doctors,bless you that's all it ever seems to be,BLOOD TESTS,my daughter is constantley having blood tests,i don't know why they bother,they never seem to do much apary from say that there is not much. improvement or they loose them.

Hope you get a rest from feeling so rubbish ,I don't really know very much about the meds used to treat lupus neither does my daughter ,she is also on anti malarials,inflammatories,immune suppresants etc,I think she is at a stage where she doesn't care what they are called ,they only seem to work short term for her.

Look after yourself.

Sandy.

[krisdy]

I have had systemic lupus for 4 years now. well really I think I have had it for 30 years. Right now I am not on any steroid are anti malaria drugs! I got steroid physcosis and almost died 3years ago I was on a vent. the steriods made me crazy with the high doses. Right now I have about 30 blisters in my mouth. And alot of fatigue. but the drugs are just as bad as lupus.