going off steroids

[rodders1941]

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

in going on another prescription ? rodders

[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.

[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

[Hidden in reply to rodders1941]

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

[rodders1941 in reply to Hidden]

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

[Emerdale in reply to rodders1941]

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

[rodders1941 in reply to Emerdale]

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

[Emerdale in reply to rodders1941]

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

[rodders1941 in reply to Emerdale]

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

[Emerdale in reply to rodders1941]

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

,

[rodders1941 in reply to Emerdale]

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

[Emerdale in reply to rodders1941]

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

[rodders1941 in reply to Emerdale]

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

[rodders1941 in reply to Emerdale]

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

[Emerdale in reply to rodders1941]

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 👍

[rodders1941 in reply to Emerdale]

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

[Emerdale in reply to rodders1941]

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

[rodders1941 in reply to Emerdale]

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

[Emerdale in reply to rodders1941]

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

[rodders1941 in reply to Emerdale]

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

[rodders1941 in reply to Emerdale]

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

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

[cazza34 in reply to rodders1941]

Rodgers I've been on methotrexate mofeil for a year... no side effects and it dampens down imflammation just like prednisilone. I'm on 1000mg twice daily

[rodders1941 in reply to cazza34]

Cazza thanks for your information about medication l will chase it up .

god bless rodders

[rodders1941 in reply to Emerdale]

Louise just read your email again , the master plan know is for me to see a specialist at the churchill hospital in oxford , and lm still on steroids 3 a day but lm hopeing to come down to 2 a day which my wife imforms me is a very low dosage, but lm still searching for a alternative. but my biggest issue now is this chinese bug, and how to avoid it!!! lm starting to think lv got what lv got and its up to me to manage my life round it the best l can . god bless Rodders

[Emerdale in reply to rodders1941]

Hi Rodders Good to hear from you .

That is a low dose if you can get down to 2 and you feel ok ish then having experienced what we both have ,as regards any help or information from GP or anyone else .

Even though my symptoms of got worse shortness of breath which I’ve had for more than 6 weeks now 😱seen the GP twice first time he casually swivelled around in his chair when I asked him what he thought it could be and he said as casual as you like ! Oh just a bit of heart failure 😳,

Anyway to cut a long story and after a few battles more with the surgery I had my echocardiogram and thank goodness I don’t have heart failure , but breathing worse so went back to the GP again 🙄This time he said it’s my weight and I need to lose 4 st When I said you do know that steroids put weight on so how am I supposed to lose weight ? He again came out with these wonderful one liners STARVE yourself ,

Now I’m only 14 st and 5 ft 6 and yes like all of us I losing a a bit of weight will always be beneficial and I try to maintain a healthy diet .

So I’m slowly coming to terms with like you say excepting that I’m on my own with this and in the event (And I’m sure it will) my condition deteriorates then I will either go straight to the hospital or call an ambulance 😟And I think that’s what they are waiting for as well ! It must be because this illness is progressive and they are just not interested .

Sorry to be so negative Rodders .

I think the way forward for you is what you said try to manage your life around it , I can talk the talk but not walk the walk ☺️Because I find myself looking understones in the hope that I’ll find something or someone to treat my breathlessness .

God ! What a sorry state this country is in 🥺Take care Rodders Godbless 🙏👍

[rodders1941 in reply to Emerdale]

hi some good news l spoke with a nice guy who,s in one of these volunteer groups , he reckons with our condition we could live for many many years, in other words a regular life spam ! so chin up and chin chin chin.

are you going to this LUPUS converance in Oxford this month lm going but lm not sure about my wife , lm after as much info as l can get my hands, are you going ? should be interesting. have you heard of a drug called METHOTREXATE lm just about to chase it up.

chin up good luck and god bless rodders

[Emerdale in reply to rodders1941]

Hi Rodders First I’ve heard of the lupus conference ,I’m sure it would be very interesting but Rodders we don’t have lupus ? Well I don’t I’ve got Eosinophilic fasciitis do you have lupus ? .

Yes I know all about Methotrexate I’ve read a lot about it and spoken to people who are are on it and have been on it and I haven’t heard one positive comment about it from anyone 🙄Which is very worrying because my rheumatologist keeps pushing me to go on it I’ve managed to put it off so far but my next appointment on the 10th March she is expecting me to go on it 😟But I’ve got news for her I ain’t ☺️Like I told you in my last post I’m having terrible shortness of breath and the thing about Methotrexate is one of the side effects is that it can effect your lungs so I’m not going to take it .There is another option Can’t remember the name now but it begins with Am something so I’ll I’ll try that one . Not sure about oxford ? I live in Cornwall where abouts are you ?

Take care Rodders Godbless 🙏👍

[rodders1941 in reply to Emerdale]

hi, good to hear from you again ,thats the trouble with these doctors who keep mum, lm not sure what l have , BUT comes my appointment at the churchill hospital

l want answers and no flannel, l think some cracking of the whip is in order !!! lv joined our local gym and found

it keeps me in shape,lm starting to realise exercise is the rolls royce of all medication, but l dont over do it ! which was a hard fact to swallow. by the way l sacked my specialist who l saw for my autoimmune complaint.they have given me another and a date to see him in april .

lm now about to get on my hobby horse, l think they should have more doctors who come come from working class backgrounds, and less from middle class ex public

schools types. what say you l would like to know????

take care god bless Rodders

[rodders1941 in reply to Emerdale]

hi , sorry forgot to say ,we live in bedfordshire which is handy for oxford and cambridge hospitals, do you live any were near penzance. keep cool Rodders

[Emerdale in reply to rodders1941]

No I live in St Austell ,I was born in St Just near lands end seven miles from Penzance ,my brother lives in Penzance my other brother lives in Redruth and I’ve got a brother and sister that live in Plymouth ,so we’re all over the place 😆.

You asked about Penzance have you been there or know someone there ? .

By the way I’m going to ask my GP for a referral have a HR.CT scan ,

I must rule out I PF reading up on my breathing problems everything is pointing to pulmonary fibrosis .

I know they won’t agree to give me one on the NHS so I’m going to have it done privately ,unfortunately I’ll still need a referral from my doctor which I know is going to be another battle 😡.

Also while I was looking up about pulmonary fibrosis I came across two types of drugs they use to help slow it down when I saw this I thought of you .

The names are Pirfenidone. and Nintedanib .

If you go onto Youtube and type in idiopathic pulmonary Fibrosis you will be able to read all about it 👍I think it could be something to help your condition 🤔Good luck let me know .

Take care 🙏

[rodders1941 in reply to Emerdale]

hi thanks for reply, yes l will chase those drugs up !by the way a got another appointment to the hospital in oxford,

its true what they say its a squeaky gate that gets oiled !

lm going to join wait watchers, l need to loose a stone and a half, trim my self down , l think it my ease my breathing,

my wife and l spent many a happy hour in cornwall. lv heard about a medication that helps you get rid of mucus

its carbocisteine and mucadin ,will get the gen on these to day i.e. doctor google. take care god bless Rodders

[rodders1941 in reply to Emerdale]

Hi had a good session with a specialist at the hospital ,he has put me down to see a specialist at the Ratcliff hospital in Cambridge, lm starting to learn how to play the game , the more specialist l ask ,the more l start to pin down the nature of my condition, and what medication suits me. take care ,god bless Rodders

[Emerdale in reply to rodders1941]

Hi Rodders That sounds promising Isn’t it sad that we’ve got to learn to play the game and your absolutely right we do have too .

For Eight months I’ve had this condition first three months no treatment at all ! Reason given they couldn’t give me anything because they didn’t know what was causing my symptoms (long story ) All I know is that my inflammation levels were rising weekly and I was in a terrible state could hardly move .

Finally I was given steroids that I’d been begging for to stop the inflammation but they waited Three months until I was really in dire straights took myself to A&E Very breathless and could hardly walk legs were huge and rock hard and it started to go into my Arms ,I honestly think if I hadn’t have gone that night it would have been a different outcome , Anyway Rodders l was given all the tests MRI .

PET .

Stomache chest and pelvis scan with contrast .

I’ve been on steroids ever since Reduced down from 60mg to 30mg .

Like you I’ve had to learn to play the game ,but it’s warn me down I’m tired of battling all the medical profession all the put on and put off ,always building expectations up that the next consultant will be the one with the answers I’m looking for.

Then after seeing them I’m still no wiser and left feeling emotionally drained .

Good luck Rodders give it your best shot 👍And write everything down keep a record who what where and what was said ,Six months down the road you’ll be glad you did .

Godbless 🙏☺️

[rodders1941 in reply to Emerdale]

Emerdale thanks for replying yes l go to the Radcliffe in the next 6 months ,l hope its sooner ,in the mean time hes put me on 4 tablets of steroids for 4 weeks then down to 3 then 2. so we shell see! in the mean time l shell keep on searching for the holly grail i.e. a medication thats as good as steroids with little or no side affects. remember we are both fighters , chin up , back straight, and sing a verse of rule Britannia . some say ?

god bless Rodders

[Emerdale in reply to rodders1941]

I’m singing it now Rodders 😆

Thank you for the pep talk sometimes i just need reminding 👍

Nobody fights better than us brits when our backs are against the wall .

Got a lung function test on the 5th then my killer Rheumatologist is going to put me on Methotrexate 😢So I’m joining you on the holy grail 🙏

Godbless Emerdale.

[rodders1941 in reply to Emerdale]

Emerdale thats the sort of fighting talk we all should be shouting from the roof tops

and demanding more straight talking information from doctors and specialists,

remember Emerdale our generation paid for the N H S and all the jobs for the

doctors and specialists, thats a fact of life. god bless Rodders

[rodders1941 in reply to Emerdale]

Emerdale hi, l think l may be on to a medication that will help me get off steroids,its called HYDROCORTISONE and what l can see of the side effects its what l could live with , have you heard of it ,lm trying to get as much information for others on site,

ld be interested in your reply. god bless Rodders

[Emerdale in reply to rodders1941]

Hi Rodders Sorry for delayed reply problems with I pad .

Hydrocortisone yes I have heard of it and I think I even briefly looked at it once .

But I must say Rodders having read up on it I must say i wouldn’t have any reservations about being put on that as a replacement to steroids 👍All meds have side effects but in this case I think the benefits out way the low risk of side effects ,Well done Rodders ☺️.

You know what I’m going to say now don’t you ? All we’ve got to do is convince our so called specialists to work with us and give it a try 😏.

When is your next appointment ,mine is in two weeks I’m both excited and apprehensive I don’t want to get my hopes up but I honestly can’t see any reason we couldn’t trial it at least .

Keep me posted as I will you ok ,I might even E Mail her 🤔To gauge her mood so I can prepare for battle before I see her 🤞😝Take care Rodders Godbless .

Louise .

[rodders1941 in reply to Emerdale]

Emerdale thanks for your reply ,yes it sounds ok lm going to get more info up on it then go to my doctor , who is ok and put it to him ld be willing to give it a try, in four hours l go to get a scan , when l come out lm into see the specialist who deals with the immune system ,when l saw her last l told her the medication she recommended would have sent me blind in one eye, she told me to come back in 10 months time,

l dont think so !!! so let battle commence. Emerdale l keep saying to myself our generation paid for the NHS and all the jobs for doctors and specialists,they owe

us !!!!!!!! l will let you know how the battle goes on . god bless Rodders

[Emerdale in reply to rodders1941]

Hi Rodders Good luck with your scan ,which scan are you having ?

I’ll be very interested in hearing what your. Consultant has to say about Hydrocortisone 🤔

I agree with you about these consultants they do owe us we’ve paid into NHS all our working lives I don’t see why we should Tip toe around these consultants for fear of upsetting them ,as if there doing us a favour by even seeing us .

Rodders I’ll tell you now if I get the negative response i usually get when I want to discuss other options of treatment im going to have it out with her ,I need to clear the air I want answers and If that means a battle the. Bring it on .Godbless Rodders 🙏Louise

[rodders1941 in reply to Emerdale]

hi thanks for reply yes had the scan they injected me with some kind of purple stuff to show my vains around and going into my hart. l have ordered a dvd of it should be interesting, will let you know the outcome !your right the days of yes sir no sir are on the way out with these middle class ex-public school type specialists. dr google has

given the working classes a very powerful tool . what say you . keep yourself warm Rodders

[rodders1941 in reply to Emerdale]

Hi Emerdale had the scan they injected a dye into my arms to take a look at the vains

in my lungs so it seems if they are getting on the ball, rang up the secretary in charge of immune system department, told her l wasent going to wait 10 months to see her again, so l will tackle he about hydrocortisone, how do l get on line to ask others if they have had any dealings with hydro ? take care Rodders

[Emerdale in reply to rodders1941]

Hi Rodders Just put the question out there ! On this forum Health Unlocked just ask has anyone had any success with Hydrocortisone as in replacing steroids .

10 months 😮what strength steroids are you on ? I take six tabs a day which is 30mg .

I was on 12 tabs a day 60 mg .

Do you have regular blood tests ?i have my bloods done every fortnight .

Get on that phone to your Rhuematologist 10months No way .

Take care Godbless .Louise

[rodders1941 in reply to Emerdale]

hi, thanks for reply lm not sure how l go about putting my message out on the forum !!.lm on 3 tablets a day for 4 weeks then back on to 2 a day, lv ask to see the immune

specialist l will let you know what goes on, its not good when you have to battle for a decent service. lm starting to think they are recruiting doctors from the wrong social

level. take care god bless Rodders

[Emerdale in reply to rodders1941]

Hi Rodders That’s quite a low dose 👍that’s one good thing .

Your right about it being a battle my surgery they’ve got a different tac tic 🤨They were always limping along relying on luck more than good judgement regarding diagnosis .

Now there is something a lot more sinister going and I’m determined to get to the bottom of it ,Please don’t think I’m some nutter with a grudge against the NHS far from it , up until I really needed them as regards my rare condition I always thought the doctors at the surgery weren’t to bad .

But wow how wrong I was ,even I can’t believe what I’ve experienced 😮Incompetence lies cover ups the list is endless .

Anyway Rodders I’ll keep battling and I won’t do it quietly .

As regards asking the forum I’ll have a go at posting a shout out About Hydrocortisone and steroids ok .

Take care Rodders It’s very blustery today in Cornwall I think same all through the country stay safe .Louise .

[Emerdale in reply to rodders1941]

Hi Rodders I’ve put the question on the forum ,so 🤞Fingers crossed we will get some feed back 🙏🤗

[rodders1941 in reply to Emerdale]

Louise, hi thanks for putting my query on the site, your a star. yes l agree these doctors and specialists cover ther mistakes up,l agreed the last time l saw a specialist to go to a hospital in oxford for a second opinion, two days later l got a letter from the original specialist saying l had to see him instead in july !!!!! so this morning l shell ask to speak to him and ask him why he broke his word.Louise people let us are not nutters , we some times get to put wrongs right !!!!! god bless rodders

[Emerdale in reply to rodders1941]

Hi Rodders Your welcome 👍Just wish we had a few more positive reply’s about Hydrocortisone 😗We will just have to keep searching their has to be something else with less side effects .

I was told once that bad things happen because good people stand aside and do nothing 😠Well it’s not in my nature to let wrongs go unchallenged and by the sound of it your the same 🤓So it’s onward and upward good luck with your specialist . Godbless 🙏Louise

[rodders1941 in reply to Emerdale]

Hi , thanks for reply, lm not able to find the replies to hydrocortisone can you help

a thicky like me . rodders

[Emerdale in reply to rodders1941]

Hi Rodders Only one reply so far .

From “powderpuff”so just put that name in the search box .

👍Take care Louise

[rodders1941 in reply to Emerdale]

Louise hi thanks for reply, were is the search box ????????????????? rodders x

[rodders1941 in reply to Emerdale]

Louise any chance of you just telling me what powerpuff said or a shorter version

lm afraid this computer lark past my generation by. god bless rodders

[Emerdale in reply to rodders1941]

Hi Rodders .On this web site Health unlocked click on British lung foundation then click on members and powderpuff will come up and you can read her reply and other posts she’s written

Rodders I know what you mean about computers believe me I’m no expert .

Anyway give it a go now and let me know how you get on, basically she says that Hydrocortisone is a steroid and every medication has side effects she also says the Rheumatologist doesn’t have a lot of choice what to prescribe .

So no joy there !

[rodders1941 in reply to Emerdale]

Hi, I DID IT !!!! l contacted powderpuff thanked her for her info,

and once again lm in your dept. god bless Rodders

[Emerdale in reply to rodders1941]

Well done Rodders

[Emerdale in reply to rodders1941]

Hi Rodders. Really pleased you managed to contact “Powder Puff”

Very soon you’ll be giving me a few pointers 👍.

Godbless 🙏Louise

[rodders1941 in reply to Emerdale]

hi Louise, hope l hear from powderpuff thers strength in numbers.

lm trying to get a list together of medication that can take over

from Prep , lm starting to think doctors keep a lott of info to them

selfs , did you know your doctors surgery is a private business

what medication goes to the patience comes from the drug companies

makes you think hmmmmmm ! take care Rodders

[rodders1941 in reply to Emerdale]

Louise, just discovered new medication in a herbal shop,

its called Serrapeptase , they have a news sheet its called the Serrapeptase News cheque it out. !!!!!!!!!!!!! take care Rodders

[Emerdale in reply to rodders1941]

Thank you Rodders

I will check it out 👍Been a funny old day 🤔Take care Godbless 🙏

[rodders1941 in reply to Emerdale]

hi, can you put a question to the forum for me please, i.e.

what are anyones veiws on the churchill hospital in oxford

who has been sent ther. please ! remember we are going to last another 20 years at least. god bless Rodders

[Emerdale in reply to rodders1941]

Hi Rodders All done 👍🙏spk soon

[rodders1941 in reply to Emerdale]

thanks again, hope you have a good day god bless Rodders

[rodders1941 in reply to Emerdale]

hi louise , l think lv found another replacement for steroids it called Pifendone, side effects look good ,check it out, hope you are o k , lm starting to panic about this coroner virus, its the damage it does is it lasting Hmmm

we will see . take care . Rodders

[Emerdale in reply to rodders1941]

Hi Rodders Haven’t had a chance to look up Pifendone yet .

Having a problem with shortness of breath and swollen stomach ? My lungs are clear so they aren’t the problem it’s when I eat it’s like I don’t have any room and all my insides are putting pressure on my organs and I have difficulty breathing 🙄. Tomorrow I am going to see an endocrinologist privately at the Nuffield in Plymouth , I have an ultra sound appointment NHS on the 7th aApril but the way things are with this virus going around it will prob be cancelled 🥺Anyway I don’t want to wait so I’m hoping she will be able to do the ultrasound soon as possible .

Take care stay away from crowds and wear a mask 👍Godbless 🙏

[rodders1941 in reply to Emerdale]

Louise wishing you a ton of good luck . god bless Rodders

[rodders1941 in reply to Emerdale]

hi, had a very thorough assessment of my condition . but is very technical my wife who,s a ex nurse is going to talk me through it. still exercising but my breathing is not getting any better, l,m getting worried about this virus, hope we all get to a vacine

before it gets to us , so hang on in ther ,how are you ,l get the feeling you are a tough cookie ! god bless Rodders

[rodders1941 in reply to Emerdale]

hi how did you go on at your last appointment, l see my next one is by phone ,

hmm bit of hobsons choice, l go out at night walking if l stayed in all day and night l would go bonkers ! Rodders

[rodders1941 in reply to Emerdale]

hi happy Easter are you still alive and kicking , my breathing is getting worse

but Im still exercising ,l have a new specialist at the Churchill hospital

in oxford she seems o k , hope your being careful ? god bless Rodders

[rodders1941 in reply to Emerdale]

Emerdale thought ld tell you lm now on Nintedanib , and things are good

breathing is more easy ,l just feel better, but its taken almost 18 months

for a diagnosis and treatment. l cannot fault the Churchill hospital in Oxford , so hopefully alls well that ends well. God Bless Rodders

[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 ☘️

[rodders1941 in reply to Caspiana]

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

[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.

[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

[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.

[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

[rodders1941 in reply to Mooka]

Mooka hi, been to see a specialist this morning , hes put me down to

see a specialist at the Radcliff in Cambridge, lm starting to understand

that the more specialist l see the more l understand the nature of my

condition and what medication suits me !god bless Rodders

[rodders1941 in reply to Mooka]

Mooka hi, you seem very knowledgeable , may l ask you what happened to my lungs when l cut back to one pill of steroids a day, and do they recover when l go back to 4 pills of steroids, l forgot to ask the specialist !if l am asking out of turn please excuse

my ignorance. god bless Rodders

[Mooka in reply to rodders1941]

Hi rodders 1941. I have been on and off steroids for nearly 10 years but I have them for my auto immune Illness not my lung problems. I have reduced my steroids loads of time and come off them completely twice. I always reduce very slowly especially when I get down to less than 10mg. If I go too fast I get fatigued and have a lot of joint and muscle pain. I’m sorry I don’t know what effect you reducing your steroids had on your lungs. I hope you get the answers that you need when you go to Cambridge. Autoimmune illnesses can be very difficult to diagnose.

[rodders1941 in reply to Mooka]

Mooka thanks for you information its very helpful, lm starting to think the main course of my illness is a brake down of my immune system through the virus l

contracted in January last year and just wear and tear of old age, this l think is

the problem the specialist have telling me, which l can understand ,but all is not

lost lv joined a gym ,l never eaten so much healthy food, and lm still smiling!!! l hope l can keep on asking you for information from your vast knowledge. god bless Rodders

[Mooka in reply to rodders1941]

Hi rodders

Can you write a list of your questions to take to your appointment so you don’t forget anything you need answers for. It’s not unusual to take months to get a diagnosis for autoimmune illnesses some of them are very rare. You are doing all the right things. Above all keep 😁. Do let us know how you get on.

[rodders1941 in reply to Mooka]

Mooka good morning , yes lm keeping all my notes next week l go back on 4 tablets a day, seems like lm retreating hope its a fresh start, lm tracking down that HYDROCORTISONE and any other medication to replace steroids. the next specialist l see at Cambridge gets one shot at explaining my lung condition if l dont get it, they are going to have to carry me out of the hospital. take care Rodders

[rodders1941 in reply to Mooka]

Mooka hi lm now on Nintedanib after being diagnosed with I P F,

at long last i.e. 18 months, my saviour was the Churchill Hospital at Oxford. my breathing is much easire, and l just feel better. So hopefully

l may last another 5 years . hope life is treating you fairly?

God bless Rodders

[Mooka in reply to rodders1941]

Hi rodders

I’m so pleased to hear you finally have a diagnosis and treatment. I hope the improvement continues. Stay safe

[rodders1941 in reply to Mooka]

Mooka thanks for reply , yes WE will out live them all. take care Rodders

[rodders1941 in reply to Mooka]

Mooka thought ld tell you my next appointment is not face to face but by phone Hmmmm not sue that will work will shell see. hope to god we all come out of this .

god bless Rodders

[Mooka in reply to rodders1941]

Hi rodders I think this is the way most of our appointments will go. Doctors are used to doing telephone appointments I’ve had them myself. I treat them how I would a normal appointment- write down a list of any questions and concerns you may have. If you usually take someone else with you to appointments you can put the phone on speakerphone but you should tell the doctor you are doing that. I hope it works out okay for you. Stay safe.

[rodders1941 in reply to Mooka]

Mooka thanks for reply , your a star take care, god bless Rodders

[rodders1941 in reply to Mooka]

Mooka hi hope you are o k , lv looked up HYDROCORTISONE it seems to tick all the boxers , have you tried it after steroids? thanks again for the lead. take care Rodders

[Mooka in reply to rodders1941]

Hi rodders

No I haven’t. It was briefly discussed when I was having problems as I tapered steroids. I had synacthen test to see if my adrenals were working. This showed they were a bit slow but were starting up so I stayed on tapering the steroids. It would be your consultants decision.

[rodders1941 in reply to Mooka]

thanks again , lm finding it difficult getting to grips with this site,

but with kind angels like you , l will succeed !!!!!!!!!!!!!!!!!!! take care

Rodders

[rodders1941 in reply to Mooka]

mooka hi lv lost your last email could you post it again please

l would be very interested to to have your views. Rodders

ps its about coming off steroids on to hydrocortisone.

[Mooka in reply to rodders1941]

If u go into your original post you can see it above the post you have just sent me.

[Caspiana in reply to rodders1941]

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 🍀🌿

[rodders1941 in reply to Caspiana]

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

[rodders1941 in reply to Caspiana]

Hi, lm going to see a specialist at the Radcliff in Cambridge , l intend to

get as much information from the specialist as l can, and what medication

l can take over a long term with as little damage to my system as possible.

wish me luck . god bless Rodders

[Caspiana in reply to rodders1941]

Good luck rodders1941 and do update us if possible. xx 👋😁

[rodders1941 in reply to Caspiana]

Thanks . your a star . Rodders

[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.

[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

[skipwork]

I've been on Prednisolone for 45 years for Sarcoidosis. They dare not take me off them, so I have been on a maintenance dose of 5 mg per day for a few years. Not safe to come off them. Every case if different.

[rodders1941 in reply to skipwork]

skipwork thank you for your reply, have you had any complications from being on steroids

for so long. kind regards rodders

[rodders1941 in reply to skipwork]

skipwork , hi l ment to say did you or have you had any side effects from taking prednisolone for so long . rodders