Stopping Prednisolone

Hello

I have been on Prednisolone since November 2011 and had varying doses from 40mg when im really bad to 10mg maintenance and since saturday 12th may been on 10mg after being weaned off 40mg gradually. I am so fed up of the side effects that it is driving me mental and im getting suicidal again, I have to wait till thursday morning to see my gp but i cant wait that long. I am seriously considering to stop taking them from my next dose (which is tomorrow morning) and was wondering has anyone done this and if so what were the side effects?

I am just interested to see if any other patients have experienced this

thank you for taking your time to read this

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I personally wouldnt just stop taking them as I have done this before and made myself 10 times worse than I was before starting them, and for me was worst decision I'd made!

Is there no way you can have emergency appointment at GP? I do this at mine and if they say dont have any request a home visit or go to A&E if you can!!

Hope things improve,

Ellie xx

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thanks Ellie

I am clueless as to what to do, I am so fed up it is unbelievable

my normal GP is fully booked till thursday morning which is when I got the appointment

not sure about home visits as I've never requested one before

cant go to A&E as RBH doesn't have A&E and I am being treated by them. my local A&E is the worse ever as when I was having a asthma attack, I had no wheeze so they told me its all in my head & I should calm down and they refused to give me a nebuliser and I couldn't even talk

thanks Ellie

xxx

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I have only had 1 home visit, however by asking that they magically find me an appointment the same day! If you are able to see anyone else, I really would! Unfortunatly my asthma is unpredicatable and so I see everyone in my doctors surgery, whoever has a space!

Oh thats annoying that theres no A&E/its awful! (its the same where I live, you wait 4 hours or more to see the triage!)

Thats stupid how they said it was all in your head! My consultant can hear when there is tightness, which to me is worse than a wheeze! Luckily though I have a few of my own nebulisers so can use them when I want, could you consider doing that? They help me a great deal and follow the rules of them mostly and help keep me from being admitted!

xxx

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I only see my GP cause my asthma is complex and severe and I got a bit of history, that I prefer sticking to one GP as some of the others just tend to treat it as a flare up not severe asthma.

It is awful and it does my head in, luckily since been transferred to RBH I have a home nebuliser kit but since being treated by RBH have hardly used my nebuliser so clearly being treated by RBH has really controlled my asthma and thats a great relief but this prednisolone is seriously winding me up and I am so fed up, its unbelievable.

From tomorrow I am not taking any more prednisolone, anything has got to be better then being on prednisolone

xxx

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If you are feeling suicidal out of doctors hours, please, please, please go to A & E for help. I know they can be crap sometimes, but it sounds like you are in need of their help. I would ask your doctors for an emergency appointment, if they won't give you one ask one of the RBH asthma nurses to call them and explain why you need the appointment. They should sit up and listen to them.

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my local A & E wont do anything, they are horrendous,

I did ask for first available appointment which is Thursday Morning as I have to be seen by my GP and not just any other GP who works there and as my luck would have it, my GP is next working on Thursday. My GP is great when I do get to see him as its cause of him, my asthma got recognised as severe brittle complex asthma & I got a quick referal to RBH.

I'm not so concerned about the suicidal thoughts, but really just want to know what to expect when I stop the prednisolone cause these side effects is getting too much for me and I cant cope anymore, its taken over my life and I know I'm only 25 with a serious illness but theres got to be something else to control it and make my life better than being housebound and feeling like a old woman!!!

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Your lucky RBH are brilliant for you! My local hospital arent all that great!

If you are feeling that rubbish and suicidal, surely it is better to stop taking them (I'm no doctor though so!)

If your seeing your GP first thing on Thursday, 1 day without them wont do much i dont think, because you wouldn't be taking your next dose until the thursday and so you can take them after the appointment if necessary (adding a few hours later wont harm you much i dont think - i never have an exact time for taking them)

xxx

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Hi nimz,

I know the pred make you feel rubbish and the side effects (a huge never ending list of side effects) are awful but I will say that I have just stopped them too and ended up far far worse and in hospital for a few days as my lungs took a huge nose dive from suddenly not having the pred.

I would definitely speak to one of the nurses at RBH today or if you can't, please call the asthma nurses on here, they are lovely and really.experienced.

X

[KateMoss]

Please do not suddenly stop taking prednisolone if you have been on it for a long time... eg more than a month without consulting your GP or consultant.

Can you call or access one of the nurses at RBH???

If you have been on prednisolone for a long time your adrenal glands can become suppressed and you could have some serious life threatening side effects.

I understand that the pred is making you feel really bad but you must discuss this ASAP with a health professional.

You need some help with both of these issues!!!

I am steroid dependent and have been told that if I am unable to take a dose orally, for more than 24 hrs, I must go in to hospital to have it IM otherwise I would go into adrenal crisis which can be very dangerous.

Hugs

Kate

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Ellie - thank you Ellie, yes I realise I am extremely lucky that RBH are so good with me, I wish it was that easy to stop them but been advised against it

Angelica - thank you Angelica, it is unbearable & disrupting my life so much, I am so lucky I have my closest friend that understands & is so supportive but I know what I'm like & I'm an absolute nightmare to be with.

Kate - thank you Kate, I was able to speak to my GP over the phone & told him everything, he said he is going to do some research & speak to someone who knows more than he does so he is better informed as to how to proceed tomorrow when I see him.

I am seeing the Asthma CNS next Wednesday as well as Dr Menzies Gow (at RBH) for my second Xolair injection so will bring it up with them when I see them.

Kate what does adrenal glands do other than provide the body with something to keep infections out? also what is adrenal crisis?

thank you all so much for the advice

hugs

xxx

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Good advice given by everyone so far in particular <gentle moderator advice for all here> please do not stop medication without discussing with relevant medical professionals. Also, be aware such posts can be distressing and frightening for others. I know some hospitals/A&Es can be less than helpful at times but please get help and advice.

Good to hear you have now spoken to your GP, will see them tomorrow and get in touch with RBH too before next week perhaps?

Asthma UK advice (Home > All about asthma > Medicines & treatments > Steroid tablets asthma.org.uk/about-asthma/... in regards to stopping and adrenal gland/crisis

""Stopping regular steroid tablets: A warning

When you are taking regular tablet steroids your adrenal gland becomes lazy, and makes less of its own natural steroids. This means you have less ability to cope with infections or deal with physical stress.

Long courses of steroid tablets (three weeks or more) can be stopped only by gradual reduction and under the guidance of your doctor or asthma nurse. If they are stopped suddenly you will be very vulnerable to infection and less able to cope with any crisis such as an operation. For this reason the doses should be reduced slowly over weeks or months.""

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Hi TJ

thank you for that

well I went to see my GP today & he has now prescribed me antidepressants & hoping they will work as they should calm my mental state down, he also wants to see my every fortnight so that is really helpful.

cannot be taken off prednisolone so got to carry on with 10mg till my next review at RBH as he has spoken to the asthma team there.

going to talk to RBH tomorrow and possibly see the ACNS as I will be heading in that direction

thank you all so much for all your advice and support

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Sounds like you've got a good plan of attack to get yourself feeling better and in a better

place emotionally too.

Big hugs xxxx

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thanks Angelica - yeah sounds like a good plan of attack, now just hoping it works and gets me feeling better and emotionally too, cause I really cant handle the ups and downs, it really does get too much for me

big hugs

xxxx

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Hello Nimz,

Was it this Wed you were at RBH? Hope you are feeling brighter and you had answers about prednisolone.

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Hello TJ

it was last wednesday I was at RBH

had a good chat with them as I was in overnight and feel more positive now

feeling a lot better overall and also seeing my GP regularly so thats helpful

thanks

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Hi, have you looked into SMART, Asthma and Symbicort Maintenance And Reliever Therapy ( SMART )I been on this for 7 weeks, feeling a lot better doing more.

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Hi

I was on SMART therapy when I came out of intensive care & it didn't work for me so went back to reliever, preventer and tried montelkust as well as aminophyline but they havent helped much either so on prednisolone and currently also having Xolair at RBH which seems to be working aside from the reactions but keep going with it and all should be well soon

[Josephone]

I agree entirely with Hidden. It is important that you complete your course of prednisilone. It would be counterproductive to stop without medical advice. I have stopped medication in the past I have deteriorated with having to start again. I do realise that side effects can be very challenging but try and manage it as best as you can till you finish your course of prednisilone. That what I do usually with my asthma problem and it helps. Hope you get better.