steroids.

[Kendavis359]

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Due to stomach problems i have got to come down off the steroids after three long years. Down to ten mg at the moment but withdrawal symptoms are making me confused, i feel so low mentally and walking is out of the question at the moment. plus feel so light headed and dizzy if i turn or move. Sleep is my best friend as well. How do we keep strong when i feel like i need to up my dose. Its a mind game and a frightening one at the moment. Life offers so much but not when yourliving with frustation. Would love to go out but then i want to come home to the safety of my home. Does anybody else know how to handle these withdrawal symptoms plus is this normal or am i just loosing the plot. Thanks.

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Hi Ken,

So sorry to hear that you are suffering so much at the moment and feeling so frustrated. Getting off pred is very difficult and a lot of the symptoms you are describing will be very familiar to a lot of us. I have experienced some of the most emotionally difficult times of my life while trying to reduce my pred dose - it is a powerful drug and we shouldn't underestimate it's effects. If these are all withdrawal symptoms you are experiencing, the good news is that it should all improve - I find it can take several weeks at the new dose before the symptoms subside, and I also don't reduce again until they do subside, but you should follow your doctors advice about the exact reduction regimen because everybody reacts differently to these drugs.

I do think, though, that you should mention these symptoms to your doctor, if you haven't already. They may want to alter the reduction regimen to try to make you feel a little better. As well, some of the symptoms you are describing do make me wonder if you have a bit of depression going on over and above the emotions caused by the pred reduction. It would be perfectly understandable given the problems you've been having, if you were getting a little depressed.

Please do discuss it with your doctor and be completely honest with them so that you can be properly assessed and get proper help. I know many people are reluctant to take antidepressants but they can be very helpful.

I do hope things improve for you soon, will be thinking of you

Take care

Em H

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In the past when I have done pred withdrawal I use to have anxiety/panic attacks in the first few days of dropping along with others symptoms. The first couple of times I found it quite frightening but it did subside eventually after a few days. My hubby could not believe the change in me at the time but once we knew what it was found it easier to deal with. I also know a few others who have had similar problems. As Emily says its best to talk to your doctor but it is for me one of the most difficult things I have ever done life.

[Kendavis359]

Thanks for the replies, the mornings seem to be the worst and i know that relates to the depression. Its like you say Emily the steroids can lift any depression with me but like in the past when i come off them i seem to feel depressed at first then i seem to level myself out after. i am just going through the emotions at the moment, but i feel better tonight. Looking back at my letter i did seem to feel desperate at the time. Trouble is with this illness i just cant go outside and work it off or go for long walk as the lungs have limited me. A friend said its like trapped in a body that wont move, and you want to break free. I will be monitoring my depression carefully over the next few days. By my normal standards i should say i am doing quit well down to 10mg but i always keep my expectations high and always think i should be doing more in life. Acceptance of the illness is what i get told and at times i can and at times i cant. Thanks once again. and i will be taking one day at a time until hopefully i can get off the steroids, or at least maintain at the 10mg level.

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Hi Ken,

I am so glad you are feeling a little better, you are right, there was a flavour of desperation and hopelessness in your post which worried me! You are right to say that feeling worse in the morning is often a typical sign of depression - I suppose the question is whether this is a transitory thing that will settle once your body adjusts to the lower dose, or whether it's something more long term that needs treatment. Let's hope it's the former.

One thing that I have found helpful in the past when my mood has been low is to keep a diary - just a brief note from day to day of how I'm feeling and what sort of things I have done that day. When you are having a bad day it is too easy to think that all the days are like that and forget that these things do vary. If you write it down, it's easy to look back over the last few weeks and see how your mood has varied, either to reassure yourself that you are having good days or to serve as a warning sign if it's getting to be more bad days than good days and you might need some medical help.

I know what you are saying about exercise - in the past, if I was feeling down, I would go for a walk or to the gym, now I am stuck in the house and that is not an option. Remember that *any* exercise at all, however little it might seem, is worth doing - even if that is just getting up every half hour, walking across the room and coming back and sitting down again. Keeping your arms and legs moving while you are sitting down is helpful too. Also don't forget the importance of a good diet when your mood is not great - I know that when I am not feeling great the last thing I want to do is start messing about with complicated food (or even explaining to my carers how to make complicated food!) so I keep a supply of healthy, nutitrious but easy to prepare, and preferably easy to digest foods like soups, rice puddings, yoghurts, also fruit, nuts and seeds.

Hang in there, it will get better, and you know where we are if you need us!

Em H

[Kendavis359]

Hello Emily.

Had a day at the hospital for a talk on my bowels with a specialist due to bloatedness which they blame on the steroids. As usual blood samples taken, and a camera you know where is what they said i needed. Acid reflux was blamed for the possibility of the asthma symptons and doctor prescribed antobiotics today for a lung infection again. So got to increase steroids back up to 20mg again. he said i had come down to quickly and thats why the dizziness and confusion. So as you can see all things come together as well as the depression. Think i will have a early night and hope tomorrow is a better day. Thanks for mailing back to me Emily.