going off steroids: lm try to come of... - British Lung Foun...

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going off steroids

rodders1941
rodders1941
30 Replies

lm try to come of prednisolone steroids i.e. 2 day has any one been successful

in going on another prescription ? rodders

30 Replies
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O2Trees

You dont give much information rodders1941 so it's hard to know what exactly you are asking.

Successful reduction would depend on why you were taking steroids in the first place. If you were taking them for an acute infection then weening off them when you are better is the normal procedure and you need to get your doctor's advice as to the rate of reduction - some people take longer to get off them than others.

If on the other hand you are taking them for an ongoing chronic situation you would need to be talking to your doctor about alternatives, but in general as far as I know there isn't another class of drugs which do the job that steroids do, which is essentially to reduce the inflammation in your airways. But your doctor/consultant is likely to have already prescribed the smallest amount of steroids that they think will work for you.

Others here may have more to say on this.

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rodders1941
rodders1941
in reply to O2Trees

hi thank you for your reply, the condition l have is autoimmune disease linked

to connective tissue disease , so far after 10 months all l have had is steroids

kind regards rodders

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poemsgalore1

Do you mean Vasculitis? Perhaps your consultant doesn't think you are ready to wean yet.

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rodders1941

hi thanks for your reply,lm not sure if it is Vasculitis, as the many specialist lv seen none have explained my condition in full , sorry to sound so ill informed, but thats one of my worries. kind regards Rodders

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Emerdale

Sounds very similar to the experience I’m having it’s taken 7months to get a diagnosis even now I’m not convinced they have correct diagnosis ? I am producing to many white blood cells in my bone marrow it’s an auto immune condition like you for the first three months I was given nothing and my inflammation levels were through the roof ,my whole body was seizing up .eventually I was put on steroids 60 mg a day and immediately they relieved my symptoms .They said I have a very rare condition which only 3 people in the uk have it apparently so very little is known about it the name is Esinophilia fasciitis it effects all your connective tissues and causes thickening of the skin it can spread to all parts of the body including your vital organs which it recently has with me , I’ve been experiencing breathlessness and x ray revealed prob with enlarged heart not pumping properly .Also some consolidation in my lungs and organising Nuemonia , the only treatment I’ve been given is steroids , I’m very fearful of where this rate condition is going to attack next ? And not one of the consultants can reassure me because they don’t know . I hope you get more positive answers Rodders please let me know how things are going ,Be persistent with the GP good luck kind regards Louise

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rodders1941

Emerdale thank you for your reply , yes its very scary when we are left in the dark

but lv been told by my nurse at the doctors to demand some action ! so in about 1 hour my phone will have steam coming out of it !!!!!!!!!!!!! l wish you all the best.

Emerdale god bless Rodders

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Emerdale

Good for you Rodders That’s exactly what I should have done I think it was because I felt so I’ll that I just didn’t have the fight in me , When I look back it was like a different person.

I worked at Heathrow Airport for years and I was a shop steward so I’m certainly no shrinking violet 😆😆But one thing that has surprised me is how having this condition has effected me emotionally I didn’t expect that 😟.

Good luck today and another tip I’ll give you always get copies of your blood results from the reception and start to write everything down who you saw and hat was said start a paper trail believe me you will be glad you did six months down the line 👍Regards Louise

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rodders1941

Louise, thanks for replying ,yes lv kept all my results, but oh! did they make it difficult

for me to obtain them, did you know you can ask officially for all your personal records from the doctors and the hospital ,it comes under the freedom of information act, i. e. the law. ! which l have asked for a week ago ,it takes a month to collect them all altogether. Louise l think we the ordinary people are getting educated to ask for

more of our personal records. what say you . kind regards Rodders

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Emerdale

Hi Rodders Yes I knew that and I’ve got copies of all my medical records and your right it took about a month .

But then when you have blood tests at the surgery which I’m having every fortnight at the moment you can get a copy of the results from the receptionist at the surgery she will just print it off for you .

Hope you got some Answers today 👍

Very tired now so off to bed .

Goodnight Godbless Louise x

,

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rodders1941

Louise, thanks for reply ,lm going to ask if l can transfer to Papworth hospital in Cambridge, has any one been ther , it sounds as if its got a good reputation,

l live in hope . take care Rodders

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Emerdale

Aww wow yes yes yes 👍I’ve just googled it and it looks and sounds amazing wish I could get there 😆it’s only been open since April . If you can Transfer then go for it 😊.

Good luck Regards Louise x

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rodders1941

hi will let you know if and when l get it, hope l dont have to read out the riot act to them i.e. our generation paid for the N H S and the doctors jobs!!!!! bye Rodders

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rodders1941

hi just looking at your last email , my white fingers in the clod weather has gone and lm sleeping better, seems to me l may be getting over the connective tissue disease,

if thats good or bad lm not sure, hope its good ! god bless Rodders

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Emerdale

Hi Rodders That’s wonderful news 🤗I’m so pleased for you will message you again later early eve .

I am out all day today my sister is coming down from Torpoint and we are doing a bit of retail therapy 🤣🤣with my other sister as well so 3 of us 🥳I’m looking forward to having some laughs , and talking about something other than medical stuff .Have a nice day Rodders will message later 👍

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rodders1941

Hi thanks for reply, yes l would be interested if anyone else

has had a reprieve from white fingers, lv just be to the gym

thers a group ther with a variety of lung diseases , they told

me you can come of steroids by using inhalers, hmmm l

wonder. god bless rodders

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Emerdale

Hi Rodders Going back to your previous E Mail ,

Are you off steroids totally now ?and how is your breathing ?

And did you have any luck getting registered with papworth hospital ?

Really encouraged that your condition seems to be improving 👍Regards Lou x

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rodders1941

Emerdale thanks for replying no lm still on two steroids

a day, l want to come off them but the more l swot up on

the alternative the side affects sound horrific, so l will keep

on trying to find another medication, wish me luck l think

l will need it. l go to see the specialist next Friday ,l will try

to keep my cool , but he is not helpful l shell tell him l

want to transfer to Papworth hospital. how do l put my

search for a alternative to steroids were all the others can

see it .can you help? take care, god bless Rodders

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Emerdale

Hi Rodders What is it with these consultants ?

I have no confidence in mine whatsoever and it scares me to think of how much control she has over my health and well being ,

Has yours suggested replacing your steroids with methotrexate ? Mine wants me to go it but having read up on the possible side effects it terrifies me .

A very good web site you can look at is patient.co.uk

It’s the official web site all the medical professionals use .

Good luck 👍Spk soon

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rodders1941

Emerdale, thanks for your advice, yes the specialist who deals with

my immune system tried to get me on Hydroxychloroquine, l read the information she gave me which stated if you have any complication with your eyes it could make it worse, she hadent read my medical notes so l told her l couldent take the risk of blindness ,with that she told me to come back in 10 months time. then they wonder

why we loss our cool. l will look up that medication and also that site for Patient .co

thanks again your a star . god bless Rodders

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rodders1941

Hi lv just looked up the side effects Methotrexate , how on earth do

they expect us to take that ,words fail me !!!!!!! Rodders

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Caspiana

Hello Rodders,

I am also not sure what you are asking. Just to be clear, has your doctor asked you to wean off of the steroids? Coming off steroids must always be done with the advice and guidance of your doctor. Always.

Cas xx ☘️

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rodders1941

hi Cas thanks for replying ,of all the specialist !!! none have told me to come of steroids

thats my concern they tell me very little,in 8 months they have only treated me with steroids, other than scans, xrays, and blood tests. now lm getting worried as l think

my breathing is more difficult. god bless rodders

1 like
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Mooka
Mooka
in reply to rodders1941

Hi

You really shouldn’t stop taking steroids unless your doctor has told you too. If you have an auto immune disease stopping them can cause a flare. Stopping them to quickly can also make you feel quite ill. You need a proper reduction schedule from your doctor. I would ask your doctor what you have and what they think your future treatment should be.

1 like
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rodders1941
rodders1941
in reply to Mooka

Mooka thank you for you advice , l need to know some information on alternatives to steroids , seems to me l get more information about my condition from google.

but l did have a nasty shock when l tried to manage on one tablet a day kind regards

Rodders

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Mooka
Mooka
in reply to rodders1941

Please please don’t cut down as quick as that. You are reducing your dosage much too quickly. Your adrenal glands will have become lazy and won’t be prepared to kick in that quickly. As far as I am aware there is a trial going on for something to replace steroid for autoimmune diseases but it is still at trial stage. Your doctor may also consider hydrocortisone but again that would have to be prescribed.

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rodders1941
rodders1941
in reply to Mooka

Mooker firstly thank you for your reply and sound advice, hopefully my results from the lung function test will get me time with the hospital specialists, l suspect it will

as my lung capacity has gone down . lm trying to get together an alternative for steroids to put to him ! once again thanks . Rodders

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Caspiana

Hello Rodders, 👋

You must not cut down on steroids without guidance from your doctor. It sounds like you are not happy with the course of treatment from your doctor, and you urgently need to discuss with your doctor why you need to be on a continuous dose of Predisone. Google is very informative most of the time, but please remember Dr. Google does not know your past medical history or indeed your present medical situation. Nor can it make any judgement on the course of treatment you require from now on.

Wishing you well,

Cas xx 🍀🌿

1 like
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rodders1941

Dear Cas thank you for your advice , the case so far is lv not had a deal of treatment other than steroids. its bee 8 months now and my breathing is getting worse. but l

hope to see my doctor this morning and l will give him every detail of my experience at the hospital ,see what he says. god bless Rodders

1 like
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cazza34

I'm coming of prednisolone, but you need to taper down the dose or you can get bad side effects. I was on 20mg daily along with cellcept. I'm tapering down every 10 days. So I'm.now on 15mg, then down to 10 then 5. If you want to come off or reduce you need to taper.

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rodders1941
rodders1941
in reply to cazza34

Cazza thanks for your reply., hopefully l will come off the steroids

in the long run , but lv been shocked at how little information the

specialist are willing to give me about my condition, thats why l

go to google so much, at least ther l do get a anwser !!!!

good bless Rodders

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