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208 Posts
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
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