Weaning off Steroids

Posted , 6 users are following.

I think Im just feeling sorry for myself. Ive been on Prednisolone plus other medication for 2 years and I stopped taking the steroid 5 weeks ago after reducing my dose down. The Dr wanted to know the 'reality' of where my chest is at and generally how I am. She did say to me dont be a hero, any symptoms go straight back on them. Im not being a hero, but I thought I needed to be off them for sometime so my body can adjust, just as it does when the withdrawl kicks in when the dose is lowered. Ive noticed I wheeze and cough more, and Im breathless more. On the upside, im losing weight  and its obvious, the lumps on my back are decreasing, my brain fog has gone and i feel less drugged up. 

This weekend I've over done it doing jobs and going places. I had a huge hot sweat session yesterday in the middle of town. so much so I had to go and buy another thinner top to wear. Soaked hair, soaked skin. It started raining so i didnt look such an idiot. I got home and had a freezing cold episode to top it off.

I'm seeing the consultant on friday and Im worried that they will put me back on steroids.Im also worried that its flared up again.

In the cold light of day I will have a word with myself and know that its a setback, and to be expected. I'm hoping that its like this when someone is weaned off steroids for a number of weeks and it will improve as the body adjusts. I just dont want to go back to steroids,

Sorry I just needed to get that off my chest - no pun intended.

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10 Replies

  • Posted

    Nickademus

    Coming off is a long journey you are at the start. It will get better as it goes on trust me. Hopefully the doctor will keep you off them as you are far better of without them once they have done their job.

    With the chest issues you outlined, ask the doctor if ventolin used in the short term would assist you with the adjustment time?

    Know you can do it.

    Regards

    Tangles

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  • Posted

    Hi Nickademus,

    As far as I know (from my own experience) your symptoms (or part of them, at least) are the result of taking prednisolone for a long time. A good idea would be to let your doctor know as soon as possible that you have developed all these symtoms. However, you could talk to her and suggest to take prednisolone only if symptoms don't improve in time. She might agree (at least, my doctor did) and ask you to go for check-ups every 1-3 months. As long as your x-ray looks good, you should be fine even if you don't feel too well. It might take a few weeks, even months for your body to get rid of prednisolone...

    Take care,

    Magda

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    • Posted

      Thankyou for your support.

      I havent developed these symptoms, they have always been there but improved as time has gone by. I already see the consultant every 8 weeks, but dont get xrayed. I think I just need to be a patient patient but thank you for your thoughts x

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  • Posted

    Hi, you are not feeling sorry for yourself it is awful having to deal with this.

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    • Posted

      Thankyou for your support. I think the frustration is the biggest concern for me. Not being able to do the simple things that your head says you can and your body just laughs at. Not getting better as fast as you want to and frustration at others who dont get it because they just dont. Humour is my godsend and the ability to laugh at myself instead of crying 
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  • Posted

    Hi Nickademus

    You said in one of these posts "I havent developed these symptoms, they have always been there but improved as time has gone by"

    You may have an underlying condiction that has not been diagnosed.

    Please outline these condictions to your respiratory doctor so that he may treat them if he feels it is a seperate condition.

    It may only be something small but it might add to your overall health.

    Hope so

    Regards

    Tangles

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  • Posted

    Hi Nickademus

    Pace yourself! Sounds like you were trying to prove that you could live without the roids and overcooked it. I did that last week to myself by going on a long walk, which I really enjoyed but was wiped out for 3 days afterwards. I've been stuck on pred for months now - every time I cut down by the smallest fraction the sarcoid reminds me that its still there (as if I didnt know!). Keep the faith. The hot sweats are a bummer. Does anyone else get the constant need for a wee? smile

    Good Luck. Newton

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    • Posted

      Oh I can wee for England! Plus with water tablets for the retention caused by pred I mamge my day by knowing where and when I need a widdle!

      I saw the Consultant on Friday and my cortisol levels are sufficient after coming off Pred. I told him I dont want to go back on them but only if i have to then i will. He was happy I didnt want them. I told him my symptoms had worsened off them, about m darkest hour when i put this post on and we had a in depth chat about it all. The good thing about it is my hospital is a teaching hospital and they want to learn from patients so they ask loads of stuff and tell you loads of stuff too. Again this one said they are guided by me as I know me better than they do.My levels had remained the same. I do think though he may use 'lose the weight' as a cover up. I would if I could. Saying that i've dropped 2 dress sizes, everyone commenting on my weight going down, i can see I have and measurements say I have. However when I went to the whale weigh chair in the clinic, I'd lost about 2lb in weight. Was gutted. Mt friend tells me its turned to muscle but it will come off when it wants to. Anyway they will review steroids in the mnext 3 months and see where im at then. I have the option to call them at any time if I feel I cant cope. Ive got a Vit D medication to take so im hoping that will perk me up. He did ask me how I wanted to take the Vit D. He wasnt very forthcoming when I asked for all expenses paid to Mauritius. Sack that Dr!!!!!!

      Nicola

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  • Posted

    I've had it for close on 25 years. I was on prendisolone for about 10 years but thankfully at a low dose so missed the "buffalo hump" back. One day I just stopped and haven't looked back.

    However I have discovered that it is a real stress indicator. If I burn the candle at both ends or allow business to getme down then without any warning it just comes back and bites me ! I get the night sweats, my joints swell and are painful, i'm now susceptible to gout, but a good 25ml dose of prendisolone followed by 20ml the next day, 10ml the next then 2 days of 5ml does the trick. I'm just coming down off the first re-occurence in 6 years and just like you have the tight chest and cough even though the blood tests show no sign of inflamation associated with the sarcoid. So my advice is keep an emergency supply of prendisolone handy and use it when you recognise the symptoms recurring. A good nights sleep helps the after effects and for me the off the shelf "Night Nurse" deals with the chest issues and gives me a good nights rest.

    On the bright side I'm now 61, play golf twice a week and carry my clubs, so it's only a long term disability if you allow it to become one. Sarcoid has the effect of destroying the confidence you had in your body, don't let it !! A strong combative attitude and determination to live as normal a life as possible is the greatest medicine you can use in my experience

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