And I feel utterly lousy! My lungs seem fine (I am coughing a little bit more than I was), but my word my joints (especially around my lower back and hips) feel like they are twice as old as they are! I also have this weird sicky feeling that comes and goes and I just feel tired.
Saw my GP on Friday and he thought that this would pass in a few days whilst my body got back the correct balance. Anyone else suffered like me? If so, how long? I have been on them for 20 months so I guess it will be a big adjustment. I don't even feel up to going swimming which is very unusual for me.
Marie x
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I can't help you with answers to your questions as I've not been on long term steroids, but I just wanted you to know that I feel for you and hope that you are much improved in the coming days and weeks
was wondering how you were doing! I'm coming down off a 40mg dose...up to 23mg this week, coming down in 1mg doses as coming down in 5's really knocked me back...I wonrt be able to come off them permantly but hoping to get to a maintenance dose of 15mg by summer. I'm also experiencing pain in my legs and arms weird nausea and tiredness hopefully it will pass for both of us...chin up!!
Hullo, Mrs Shimmy, I hadn't seen you around and wondered if you were ok. I know you are a busy lady so I hope that you will be feeling much better as soon as possible. Love Annie80xx
Hi
I know that steroids can cause muscle aches/inflammation, it doesn't seem unreasonable to suppose that coming off them should also affect the same area.
Alternatively, it could of course be coincidence; I had a cold thing recently which started of with a very achy body, oddly enough particularly hips. I think steroids have their uses but they are serious medicine, I use a steroid inhaler, but would be very reluctant to take the tablets unless a matter of life and death.
I'd stick with it and go to GP if not feeling better after a few weeks.
Take care
Bolilly x
Thanks everyone for your advice and good wishes. I'm delighted to be off them - just hadn't quite anticipated it feeling like this.
I summoned the strength to go swimming. 1100 metres done and I feel a bit brighter. I'm going it might help my joints too.
I'll persevere and see how it goes.
Thanks again
Marie x
Did you have a short synacthen test at the hospital before coming off them? To check that your adrenal glands haven't been affected by the pred? Fatigue, muscle weakness/pain and nausea are all symptoms of low adrenal function, for which you would need to have your cortisol levels topped up by hydrocortisone until your adrenals recover. Just a thought.
ff x
in reply to
Hi ff
No I have never heard of this test. Going to give it another week or so and then go back to GP. I actually feel much better after my swim - far less joint pain.
I went through this for years ,infection ,high dose of steroids,reduce the dose,breathing awful big struggle to do anything,back to nebulisers ,oxygen .back to steroids ,managing ok.
Took the decision myself to try a maintenance dose ,managed quite quickly to get down to 5mg a day,now down to 2 mg,quality of life far improved.
Spoke to GP (great bloke very understanding )he was happy ,pointed out I had not seen him in almost a year ,so it was working.
Did find the 1 mg tablets very useful for reducing the maintenance dose.
I am aware of the side effects ,but pointless having strong bones if you can't breath.
I have been on steroids for the last 3 years, they help with the undiagnosed lung condition I have.
I haven't suffered any of the painful joints or back problems you have, I just find it very difficult to get off them, the lowest dose I have managed is 5mg before I have problems with not being able to breath and I also start wheezing alot. The dose then needs to go up again.
I hope you are soon feeling alot better soon and all the pains go away.
Jan xx
hi ..new to this steriod just been prescribed it ..from wot i read it down sound good lol
ian
in reply to
They are wonder drugs for a lot of people Ian. yes there are side effects but for me and my sarcoidosis then they have worked a small miracle. I'm 2 months clean now and I would still go back on them if I needed to. They affect people in diffierent ways but hopefully you will find a difference to your condition.
Marie
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