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· 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
6,939 Posts
Hy Sally :)

Thanks for posting such a lovely positive post. It's nice to hear of people doing so well and does indeed give others a lot of hope. So often people just drift away without telling us how they're doing.

I hope that this lasts a very very long time for you and that, if you do see the warning signs of not feeling good again, you will not try to "tough it out" and let things get out of hand.

Here's to a long long long period with no meds (and plenty of firemen :p).


· Registered
526 Posts
Hi Sally,

Thanks for sharing your good news with us. I'm sending you lots of good wishes that this lasts a very long time for you.



· Registered
545 Posts
Hi sally

Lovely to hear from you! I'm so pleased to hear your good news :yahoo:
I hope you continue to feel well and remain drug free for a very long time to come!!

Thanks for letting us know sally, it's always a joy to hear when someone is keeping well!
keep in touch :hug:
love karen x

· Registered
59 Posts
Hi Sal,

Thanks for your post - it was just what I needed to give me a kick up the bum! I'm down to 5mg Pred & on Aziathiaprine but had got a little disheartened lately due to no weight loss despite the diet & lack of motivation on my part.

I'm off to see my Rheumy tomorrow so will make it a positive visit with lots of questions to set me on my way!

Glad to hear you are feeeling well & I hope it stays that way for a long time.


· The one and only
659 Posts
Sal... you are giving us so much hope... Glad you are doing well. I can't wait until I can say that I am medication free again....

Good luck to you... please don't be a stranger on the boards!!!! :blush:

· 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
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