British Lung Foundation
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Oral steroids

Oral steroids

Life is strange..just came across this article confirming my doubts..today I was going to go to the endocrinologist and see about that prednisone..so the lung specialist who wants me to stop daily steroids is not far off..now how am I going to wean myself is another story I am about to find out! 4pm!😉

Have a good day xx

Fran

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Hi Fran good luck, have a good day and take care.

😊 Bernadette xx

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Thanks Bernadette xx 😊

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Hi Fran,

The specialists will know the procedure that is required to wean you off the steroid dose you are on.

On the one hand the oral steroids can be a life saver but mis used detrimental, sometimes its a catch 22 but be guided by your docs and what you feel is the best thing to do.

Best wishes for your 4pm appointment and beyond :)

BK x

I think the side affects mentioned in the news article already well known, it is the long term use and high doses long term than increase those risks.

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Good reply Bkin

It’s getting the right balance

Our bodies are not all the same

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I have already tried..one more go..

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Hope it works in your favour Fran.

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Very very interesting, Fran 🤓 If only we all found enough confidence to give up the pred! We need some case studies of those who’ve been brave enough to change, and found a doctor who’ll facilitate it. Not me, I’m afraid.....yet, I’m not brave enough!! Though would love to be without the side effects, especially sleep and mood.

Let us know how your appointment goes, Fran.....shine the light for us all! 🦉💡💊 As always, my friend ❤️

Love Penny 🦀 xx

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Weaning off any medication is not easy & can take months. So you don’t have relapse.

Don’t understand why you’re on prednisone daily??? I am only given this for a few days when I flare up

Take it slowly & good luck at your appointment, keep us posted

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Some people with severe lung damage require a maintenance low dose of oral steroids, as some may require a maintenance low dose of anti biotics, to help prevent flares and infections. Having said that the drug is used in other illnesses too to help prevent inflammation.

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Very true.

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I have adrenal glands insufficiency as a result of high dosage inhalers and steroids for chest infections.

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Best Wishes Fran, hope it goes well take care. 😆🍀

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Thank you Majt xx

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This is odd as my respiratory nurse was warning me this morning about overuse of Prednisone.

Yet, I have not put on weight (lost it if anything), sleep during day-fatigue-and unless I have a gentle sleeping pill will be awake by 4-5am.

Without Preds can have difficulty moving rooms let alone walking any distance.

I am 80 and find Preds improve my feeling of wellbeing and my quality of life. Have been prescribed antidepressants to overcome the negative feelings overwhelming me.

Take care all and please advise if you are a happy long term oral steroid user. Thank you

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Yes same here, plus osteoporosis my fractured vertebrae, you name it I have it..

Anyway the road ahead is going to be long..I’m 66 I don’t want to end up like that lady on the picture!

Good luck to you!!

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Omg Happy."like that lady in the picture" with blonde hair and ugly teddy disease,i hope not for your sake.:)

cheeky Ski's and a cat rascal xx

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At least she hasn’t got wrinkles 😅 xx

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At the risk of being too personal you are far better looking my Happy friend ,there i have spoken and you may take that as a Ski's compliment,i don't give them out very often. :) xx

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😇😇🤓😎

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Hi Fran, let us know how things go and hope the weaning goes well. Have a good day. Xxxx 🌸😘💖

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I will.. I’ve been on 9mg instead of 10mg since Monday and I feel 🙃..

Well I’ll see what he says.

I need to get my transport.

Love,

Fran xxx

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My pulmologist took me off the oral Prednisone about 3 months ago and put me on daliresp, which does help keep flem to a minimum. Hope yours may do the same, Happylondon. Just be sure to discuss adverse reactions.

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Thanks Sharp 😊 I am on pred because of adrenal glands insufficiency not because of my breathing anymore..I have 3 inhalers and a nebuliser. I have an appointment with my lung disease specialist (LAM) in November. So will see about your suggestion with him. Thank you so much 😊

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Another thing: when, as a thought as an alternative to pills, I asked about an in home nebuliser I received almost a shriek of “NO, NO, NO- absolutely not “. I felt as though I had uttered an obscenity!

Extraordinary reaction? Or not?

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I am already on nebs as well..not so good..they make you hyper..oh they do shriek 😃

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That will be interesting. I have 5 mgs. a day and have tried weaning myself off as my weight is a big issue (!) I have tried reducing 1mg. a week but there comes a time when I start to feel ill. I just start to feel under the weather and life becomes more difficult to cope with. This leads to an exacerbation and then we are on the mega steroid roundabout for a week or more.

My consultant told me the 5 mgs. is about the normal amount a person should make so not to worry but I do. My skin is getting visibly thinner and I bruise very easily.

However, I feel almost normal on it, no, my breathing is bad, but apart from that there is nothing wrong. Unless I go into a depression which is another story for another day.

Good luck with your appointment and let us know how you get on.

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Yes I have done the same but they will substitute prednisone for hydrocortisone when I get to 5mg progressively so I understand it is easier to wean off hydrocortisone..

?? Anyway I will tell you about the plan 🤞

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Thanks. I will look that up.

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Hi..A very nice and patient consultant..well there is no going back for me, my adrenal glands have stopped functioning, so never go under 5mg and if I have an infection always raise it to a minimum of 15mg or if I feel tired or faint with nausea and/or vertigo. So he will write to the respiratory specialist to leave me be!! 😃

My body has no strength to fight against infections if my cortisol is too low, it can even be dangerous.

Some of his patients have immunoglobulin infusions and it isn’t his field but he will recommend that my doctor looks into it.

Take care!! Good night!! I am exhausted..xx

Fran

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Well that’s sorted that suggestion out, Fran. Very good that you spoke to the expert.

Heaven knows what would have happened if you’d followed the suggestion to reduce and come off pred!

So we’re all married to pred for quite a while longer 🧖🏻‍♀️💐

Nightie night for now. Sleep well if poss, my friend 🦉🦋🦀

Penny xx

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Yes thank you Penny 💓 it was worth the journey although I am tired as a result of it all. I slept better no blood test this morning.

Now I am waiting for the sputum test. The GP wanted another one. It takes 3 days. So if I still have that bacteria then he will give me antibiotics. For now I have the nasal antibiotic gel.

Love,

Fran xx

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Keep resting when you can, Fran. Help yourself to recover from all the investigations, and if that bacteria is still around, keep resting until the right antibiotics come to the rescue....give your depleted immune system a chance to deal with things.

Stay happy too, one of your strengths ❤️, reading your books 📔📕, your newspapers 📰, and listening to music 🎧🎼, watching the football ⚽️. It always, always helps 😁

Love Penny xx

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Good to know you got the expert advice Fran and great he is writing to the lung specialist about your situation. So good to know you are being well looked after, its a blow that the drugs that help us can also cause us other problems, but its weighing up the the advantages over the disadvantages long and short term.

Rest up and keep doing the things that keep you stable and improve daily health and wellbeing.

Best wishes Bkin

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Thank for your kind words Bkin 🌸

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Well, they know best so carry on I guess.

Most important to avoid infection as we all know but sometime it’s not that easy.

I know that if I was likely to fly again I would most definitely wear a mask.

I will ask my consultant when I see her in December about the steroids or maybe drop a line to my nurse who knows a lot!

I would like to share this with you. My hubby has recently had treatment for prostate cancer and today he was told that his PSI is 0.4 which is a really good result apparently. That’s one of us out of the woods for a while.

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Yes well some years I catch things more than others..I am pleased for your husband Jeanrita, thank you for sharing xx

Fran

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I have had to take the devil's pills much too often this year (without any ABS). I am still waiting for my new inhaler Fostair 200/6 that has twice the inhaled corticosteroids than my present Fostair 100/6, hopefully to get away from having to take the oral corticosteroids tablets (Prednisolone).

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Well beware because it seems there is no turning back. Should you feel very tired get your cortisol tested.

So I have my steroids card in my handbag in case something happens but he suggested a bracelet or something like it. I have to see where I can find one here.

Take care 2greys x

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Hi fran glad you at least got answers and must feel better now you have seen your consultant ... i got told 2 years ago im not allowed steroids long term as its just too dangerous for the cysts but on the other hand i am on 3 inhalers my fostair is now double strength and also can only have nebuliser or inhalers which i prefer th e latter ... i have been told such conflicting opinions that i now use my own opinion as was sinking fast before this ....i have noticed when i am on steroids my oxygen goes up and i usually end up not using it for a few days but soon as them steroids stop my oxygen is shocking at times .... i wish i could be free of all the worry and pain and dread just for a few days as lately im very deflated but im still here and i will try to perk myself up xxxxx Wish you the best with your health my friend ..... take care oh and more pics pls of anything x

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Hi Mel my LAM sis 💕

Strange they told you it is too dangerous for cysts, they never told me..you see such inconsistency is a problem, we never know which leg to stand on.

Yes my oxygen goes up to because as it is an anti-inflammatory it reduces the inflammation in our airways we can breathe better.

Although my present reduced dosage of 9mg a day has no impact at all on my breathing. I have to be on 20mg and over to feel a difference.

I told the Consultant I realised things were getting bad when the other day the cardiologist asked me if I could climb 3 flights of stairs, I mean Mel when is the last time we could climb 3 flights of stairs and without stopping?? Not in my world anyway..

Yes I’ll keep the pictures coming but I haven’t been out and about except from hospital appointments and back!

Today was a beautiful day, I was stuck in a taxi one hour to Geneva, all across Geneva in traffic, another hour at the endocrinologist and back to the nursing home again, I was exhausted.

Had a non-alcoholic beer and pizza and fell asleep at 8.30! Just woke up! I’m going to read a bit and sleep again.

Keep on battling my LAM Sis, we have our ups and downs and our magic moments..🧚‍♀️🦋🍀💓

Fran xx

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Im still awake as usual xx will uaually go bed at 230am as just cant sleep til then and still up at 0650 am on the dot daily !I know i need to sleep more but think i have so much going on at mo im a nervous wreck in my head without realising it ...Goodness 3 flights of stairs OMG i can't even do my 1 flight at home anymore xxx i didnt realise u where on oxygen Fran i always think of u as pretty active xx well enjoy ur book and pizza mmmm x

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I am awake now..early to bed early to rise 😃

Don’t you have a sleeping pill?

No I am not on oxygen. I was talking about my own oxygen levels.

Have a better day my dear Mel 😊💓

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Got mine off eBay for £12 -that included engraving. Etc. Only thing is it came from China so took a bit longer than usual to get here.

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Thank you Liz x

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Very interesting. Nice to see it recognised more, though nothing new to us. As a child I was covered head to toes in what they called Atopic Eczema and had the Asthma to match, many many allergies, allergic to the environment. I remember being given courses of lovely dissolveable pink steroid tablets. I was also given weekly steroid injections, and potent steroid ointments/creams in copious amounts. I have always had many chest infections over the years, not realising myself that my Asthma was so Severe. All my life I have had mood swings and been very tearful. I came across an old teacher the other day who said I was a weird child, bursting into tears when should have been happy. I have had cataracts in both eyes removed, and now more are growing. My skin is really really paper thin, it worries me, and I bruise all the time. Oh, and diagnosed with Osteoporosis two years ago. My immune system is no good, diagnosed with an Immune Deficiency Disease which I can't pronounce,let alone spell. Hey though, my course of Immunoglobulin injections seem to have worked - last time blood was checked antibody level near normal. Nobody has mentioned my Cortisol levels, but then I doubt that there has been more than three months when I haven't been on a course of steroids. Severe Asthma Clinic Consultant is encouraging me to reduce and maybe come off the daily 10mg, though had a set back. My weight was terrible, but I have now lost over 10kg since February, mostly coz been too ill to eat and breath at the same time. Bit drastic, don't recommend it as a means of weaning. Good news is I have not needed to use steroid creams regularly for years, managed with just antihistamines and emollients. I think I have received Allergy/illness Bracelet leaflets from one called ID Band Company. (That might not be right though). Hope some of this is of interest. Keep smiling, spread the experiences.

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Wow WheezyAnne what a journey..

Thank you for sharing xx

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My consultant said he doesn’t like steroids and didn’t prescribe them. However, he did prescribe QVAR which is a steroid inhaler, so I bruise easily and have thin skin. I already had osteoporosis.

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Yes I understand..after 800mcg of steroids inhaling per day, it becomes systemic. That I learned when I was on that Fostair Mart Programme..

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We had a GP visit our Breath Easy Group a couple of months ago and said that once you start taking the Prednisolone often your own body becomes lazy and stops producing its own steroids. I have to take my emergency meds towards the end of each month which give me more energy and make me feel stronger, sleep less, eat more. After taking them I become tired again to the point of falling asleep after eating.i have had an appointment at an Endocrinologist clinic and go back in 2 months time.

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That’s it..my adrenal glands got lazy and then stopped working altogether..Hope all goes well at the endocrinologist clinic. Mine was very kind yesterday, explained it all clearly and I understand better how to go about managing my steroids.

Good luck Joyce xx

Fran

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Thank Fran. Was told my bloods were good but have had problems with too much calcium so they are just keeping an eye on things, not worrying about it.

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Ah that’s good news for your bloodwork Joyce..too much calcium, I don’t know what it means, I have too much magnesium!

Yes worrying doesn’t help anyway.

Such is life 😊 xx

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The calcium levels were high in February but within range at the moment. I don't understand it all , just go with the flow. Have a nice day xx

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It usually has to do with the thyroid..except if you took some supplements and too much vit D. Also if you drink mineral water choose a low mineral one.

Thank you it was a nice day. Today it is supposed to rain so forced myself out yesterday.

Have a nice Sunday x

Françoise

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Thank you Francoise . Think you may be right about the thyroid. Suppose it's normal that the older we get the more things we have . I will be 77 next month, and learning to live at a slower pace. You have a nice day xx

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Thank you Joyce, yes and on the bad days you keep looking forward to the good days xx

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Hi Joyce, I have IPF and a recent blood test also showed too much calcium. I am not on steroids.

Wonder what this means too.

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Hope things soon start to look up for you Fran 💐

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Thank you Joyce xx

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Hi Fran

Missed reading the posts yesterday so I guess by now you've had your discussion with the doctor about weaning yourself off the predislone.

Hope it goes well

Corin

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Hello Corin,

Yes but it is not going to happen. I’m beyond that now. One of those things..I will be vigilant.

Thank you for your message xx

Fran

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Good morning Fran, if you are to be weaned off steroids it will take a while and need to be supervised by your doctor. I recall my husband being on them for another illness and it took months to come off, but they worked brilliant on the illness and it never came back. So I wish good luck on that one. Will speak again when you have news xx

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Thank you Kate 🦋

No it is not going to happen, my adrenal glands have stopped functioning so I have to be vigilant now 😉

Have a nice weekend x

Fran

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Tnjoy your weekend too xx

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I just saw this. Sorry to know you're not going to be weaned off the Pred although I know it works well for you, so a bit of a mixed outcome for you I guess?

So many of these medications are like that, we don't want them because of the side effects but fear them being taken away.

It does irritate me though when health workers say it's only side effects, when we feel I'll from the medication. Sometimes the side effects can feel like an ailment in themselves. I'm glad that article explains how bad side effects can be, though health workers ought to have understood this already. I hope you're doing ok and having a good weekend.

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Yes it’s the long term side effects that are worrying..so I got caught like that young lady on the picture..I’m lucky I was older when I was first diagnosed with severe asthma. It doesn’t matter so much to crumble at 66 but at 26, what a shame, what a disgrace.

The medical profession knows what we don’t and so does the pharmaceutical world. Therefore they have a responsibility. It would happen to a daughter of mine, I would sue them.

Have a nice Sunday xx

Fran

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Morning Fran, Buenas Dia esta Domingo. The Ostio.P came on strong this Morning, My Body just Knew it was Frost & Ice outside. Never mind, Paracetamol does the trick. Yes, I re-Read the Article, had to enlarge it as my cataracts are playing up. Poor young lady, to have all this so young. My Daughter who got through her Breast Cancer has now to wear a Lymphodema Sleeve as Her Arm is swelling up since have her Lymph Glands removed. She lives in Spain as you know,so I can't hold her and say it's ok Mummy is here. But like us oldies she is strong and has a Positive outlook. I hope your coping Carino and carry on keeping us all invigorated as you do. have a Good Sunday Fran. Amor y Besos. XXX

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Hola Cariño,

You have already seen the Osteopath?? So early?

I don’t like osteopathy, I think it is rough I go for physiotherapy, it is more gentle.

Oh do you have cataract as well, what is the matter with us? Can’t we age gracefully anymore? 💃🏻

I am so sorry for your daughter 💕

They have good medical care in Spain. We will travel again or our daughters will come to us again..we are so lucky to have smarphones and messaging and facetime or skype so we can communicate and support each other..

I’m trying to support my 91 year-old-Mum at the moment, she needs a foot operation, she is finally coming to terms with it 2 years later. Now I am waiting for the doctor to come on Monday and see what is going on, from gout to arthritis, we are down to an in-growing toe nail infection.

Anyway I have to organise her care and after-care..

We’ll see Monday..

Have a good Sunday Carolina xx

Fran

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Ha Ha , Ageing Gracefully. We got to this stage because of our Ages, called "Stamina", it's a Good word Fran. Yes, Started with RA years ago after a Bad Car Accident, had hip replacement, I was 57 then, with the COPD, later it developed into Ostio, Other than Exercise & paracetamol, that is it, The cataracts have been happening in my Right eye, They are getting worse, but my Optician has said not yet bad enough for removal. I but Eye Drops from Wilko, they ease them. I wear the Lippie every day, makes me feel Good, having a younger Hubbie helps me to not be so Graceful with aging, I'm fighting it, aren't we all. Love n Hugs. XXX My Daughter comes over soon. My Pregnant Granddaughter, Sam & Grt. GranD, Amelia, arrive next week. . xxxxx

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Thank you for sharing 😘💕

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HI I AM 2 YEARS INTO XRAYS FOR FIBROSIS AND WOULD LIKE TO GET PREDNISALONE BUT CHEST SPECIALIST WILL NOT LET ME HAVE IT I WAS FINE WHILE ON IT BUT THEY SAID IT WAS NO GOOD BUT MY QUALITY OF LIFE IS SUCH A SPELL TO TRY WOULD SUIT BUT ALL I GET IS COME BACK IN 4 WEEKS FOR ANOTHER XRAY.I CAN ONLY THE VERY BASIC THINGS NOW TAKING THE BINS OUT IS A EFFORT.SO HOPE YOUR BETTER THAN THIS ALL THE BEST TOMX

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Thank you Tom and take care 😊

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