The Lupus Forum banner
1 - 3 of 10 Posts

· Registered
208 Posts
Discussion Starter · #1 ·
Hope this doesnt make anyone feel worse or fed up. Just hope it makes people feel there is hope.
Im diagnosed with Lupus (SLE) and Fibromyalgia. Its been a long old road for 2 and a half years on prednisilone and at time lots of other drugs.
I am this week.. .totally drug free.
Ive been waiting 8 months to see my Rheumatologist and struggling along with the GP as you do.
Ive this week stopped my normal dose of Pred. just to see how I would be without it all and Im doing good. Was down to 2.5 mg for ages now so thought it would be ok to stop.
Its been 6 days now and Im feeling ok.
Im still a little fatigued and my legs are a bit dodgy and weak at times but no worse than when I was on the drugs. I have the odd aches and pains but then I suppose most people do of my age and the menopause hot flushes are still a pain. I dont have loads of energy but then Ive learned to pace myself.
There must be hope with this disease because at times I have been unable to even get out of bed.
I will enjoy the time now that Im feeling good because you never know when I might be back there.
Just hope this gives some of you hope because I remember when I was really bad and thought I would never live a normal life again.
My best wishes to you all. You have been great support to me when I was feeling really bad even though you may not have known it. Its been so good to see all my symptoms on here and to know that I was not alone and that it was all quite normal to SLE.
Hope things go well for you soon too.
Luv Sal xx

· Registered
208 Posts
Discussion Starter · #10 ·
Hi again, Hi Special thanks for that.
So glad Ive given some optimism to some. Dont you just hate a clever dick! lol.
Its about 2 weeks now and Im still doing ok. Covered in an itchy rash today but then Ive always been susceptible to rashes. Sort of hives itchy spots but they often go away as quick as they come.

Hi AmandaB,
Im afraid I dont have any good news on the weight issue either. I am hoping now Ive stopped the steroids the weight will drop off but I see no evidence of that yet. Mind you I had a freind to stay last week and we ate out nearly every meal and had a good few bottles of wine so I suppose I cant expect to lose weight yet lol. Im intending to start dieting properly tomorrow. (Doesnt it always seem to be tomorrow you start a diet lol)
I have had a bit of the 'steroid hump' so Im hoping I will lose a bit when that drops off. Just kidding... It isnt that noticeable but my daughter has commented on it in the past.
Its a bit of a double edged sword feeling better I suppose as when I was so ill I thought a bit of weight and a hump and a furry face the least of my problems.
Now Im feeling better physically I want my pre steroid body back please. I will have to seriously work at that now the main priority isnt just to get out of bed and get up and about each day.
I am gradually trying to increase the amount of exercise but I still do have limitations in walking far and struggle a bit with steps. Im not sure what that is but Im hoping the muscle weakness improves with time.

Goodness me isnt this a luxury to have your own thread to talk about me me me. It seems a little selfish but it is very welcome.

Thanks everyone,
Luv Sal x
1 - 3 of 10 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.