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British Lung Foundation
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For those on oral steroids..

I got a nice email back from the endocrinologist. Honestly I am grateful to have found such a kind specialist. He was very clear that I should lower to the minimum dosage possible.

If it was 7.5mg of Prednisone per day which suited me so above the 5mg biological dosage recommended for adrenal glands insufficiency, it was considered as a treatment and not a replacement so I had to take daily calcium and vit D. I had to have a bone density scan every two years. I had to be vigilant of cardio-vascular side effects such as high blood pressure, as well as risk of diabetes and weight gain. And reduce salt intake.

Well I’m going down from 9mg to 8mg today but I must say I have had to increase my inhalers and started to take paracetamol for pain again from time to time. The lesser of two evils probably.

A view from the lakeside this week. That sun isn’t far away..

Have a good Sunday xx

Fran

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Hello Fran. Am really glad you got a nice response from the endocrinologist. What a lovely photo. Thank you for sharing. I hope you have a lovely Sunday.

*Hugs*

Cas xx 🌹

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Hugs back Cas 🌻

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Morning Fran, how wonderful to have such a helpful specialist who takes the time to explain things to you. Few and far between aren't they?

Thanks for the lovely picture, and have a great day xx

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Morning Anne 🌷

Yes so kind of him to mail me back and on a Saturday!!

Just did 20mn on the treadmill 4km per hour and slope 1%.. you have to check in with a key and on check out the machine told me you didn’t exercise enough today..😃 what a cheek. Problem is you can’t answer back 😂

Now resting before I get in the pool..of course you can’t check that in..

I’ll give Mr. Motivator a piece of my mind when I come across him!!

Have a nice Sunday xx

Fran

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Well you're better than me...I avoid exercise at all costs 😂. Too much like hard work!

Have a great Sunday too xx

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Thank you for such a wonderful photo, very beautiful.

I hope you do well now. Pete takes 10mg of pred per day and can’t seem to get below that. Not doing too badly though. Xxx 💖😘💖😘

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Thanks Carole..interesting information. I feel better on 10mg but told to taper down. Well we know the risks but as you say it is a question of feeling ok..

We will see how I cope on 8mg. I just finished 7 days on 9mg..

Specialist had said I could go straight from 10mg to 7.5mg but it was too fast for me..

Glad you like the picture.

Have a lovely day 🌺🌷🌸

Fran xx

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Good luck Fran, enjoy your day. Xxx 😘😘😘

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I hope this all works for you and you feel better on the new regime. Lovely picture, still the same old gloom here!☔️

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Thank you very much ..a sunflower 🌻 then x

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Morning Fran. I think I have missed your posts. Lovely picture. Where are you? How brilliant to have such a responsive consultant. Doesn’t it make a difference? Hope it all works out for you.

K xx

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Hi Kate

I have moved to Switzerland a while ago to look after my father. He passed away last month. I don’t know what I will do next. I think I will stay as I’ve got my residency, Dad’s flat and I feel too lazy to move back to London. I don’t have the energy.

Yes it is a smaller country, I suppose the pace of life is easier.. for doctors too..yes the endocrinologist is a good guy, it makes an incredible difference..some are cold as fish..all depends like anywhere else.

Thank you 😊

Wishing you well.

Fran xx

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Lovely Swiss photograph, Fran...thank you. If I were a bit more adept at photography and IT, you might get one of Wales....I’ll see what I can do!

I bet you’re worried about reducing a steroid dose that seems to be working well! It sounds as though you trust your consultant, so hopefully he’s right. There’s such an adjustment time needed when changing steroid doses that it might be a while before you can fairly judge the outcome, I suppose. Good luck, anyway...you’re being very sensible but brave too. If you get emotional side effects to steroids, as I do, just remember this might be a factor as you’re going through emotional times anyway with your family. The calcium/D3/bi-annual bone scans are what we’re doing anyway???

I’ve replied to another of your posts elsewhere (🤔) so speak soon. Hoping your Sunday is going well. Remember....4 nil!!! ⚽️⚽️⚽️⚽️

Penny xx 💕😎🌸

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We need some of the Welsh scenery I think, get learning Penny 😃

No I’m not worried about tapering down, I’m doing it slowly this time. I don’t want to end up like last time when I was at Mum’s and had withdrawal symptoms😊

Yes we are doing D3 and calcium but did you see what happened to poemgalore?? Scary..

I’ll have to see the GP and book for the bone density scan..high blood pressure I don’t have, mine is on the low side..weight well I’m seeing the nutritionist, and diabetes, I suppose I need a blood test for that..

So more tests to organise..that’s fun 😃

Take care dear Penny 🧚‍♀️🌷💕

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Lovely pic. I love taking photos , but iPhone space is so full😂

I have tried to reduce steroids from 10mg to 7.5mg and I had a flare so went back and have not tried again. I don’t want my lungs to be put under pressure. Would love to be able to exercise. But my motivation isn’t there yet . I’m sure it will. Have a lovely day 🙂

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Thank you 😊

I just had to buy some icloud space as photos are piling up! 😃

Thanks for sharing, it is kind of you..good to know..I can see it happening..I’ll see if increasing the inhalers helps. I started increasing my inhalers when I went down to 9mg.

Exercise helps yes..pulmonary rehabilitation at the hospital gave me a push..when I saw COPD patients etc getting up from their wheelchair, carrying their portable oxygen, going on the treadmill, the bikes, the weights, I thought well if they can do it you can. Anyway the physiotherapist, Helga from the bootcamp didn’t give me a say 😃

Good luck then 😉

Fran xx

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After reading my post I decided to go and take Mitch my 14 year old dog for a walk, he loved it , going to try and walk him every day , only did 2795 steps but lots more than any other day this week. After reading posts on fb also , it makes u sit up and think. 😄

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Lucky Mitch!! 😊 I bet he loved it!! Sounds more fun than pulmonary rehab, it was depressing..glad I can exercise on my own again..

Wow that’s a lot of steps!! 🌸Great move!!

One day at a time..or every other day even to start with..

Take good care xx

Fran

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I'm glad your endocrinologist is looking after you properly. Nobody warned me about the risk of Osteoporosis. So even though I had DEXA scan and was put on Calcium + vit D, I now have Osteoporosis. I've had 4 spinal fractures and shrunk from 5' 2" to 4' 8". Take care. xxx

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Oh my..poor you 😢.. Unbelievably careless..how do you cope? It must be awfully painful..💕

I must say I had osteopenia 2 years ago that was before the daily steroids..I am shrinking too..Mum has really bad osteoporosis too she has had several fractures..she gets calcium injections and some drips at 90..I will have to find out what’s out there I suppose..I have to watch my kidneys..

I hate side effects..

Thinking of you xx

Fran

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I have regular blood tests to check my Vitamin D levels, which they say are improving. The pain was unbearable in the beginning, but I also have hip Osteoarthritis and RA which also cause me pain. I have Zolendronic infusions (due one this summer) and Rituximab infusions. Fentanyl patches and Oramorph, Paracetamol, and Fenbid Gel. As also have Vasculitis, I still take a lower dose of Pred. Started on 8 daily,along with 5 infusions of 1 gram Methylpred). I have a rollator with seat, to help me walk short distances. Oh, also got Bronchiectasis, High Blood Pressure and in remission from cancer.

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Oh darling, my heart goes to you..💕 glad Vit D levels are improving..never heard of those meds, it sounds advanced..Being in remission is the best..As I said to a friend, when I say to myself I am grateful, I mean today I am grateful to be alive, so laying on my bed watching Big Cats with a cup of tea is rewarding and that’s enough.

🍀💐❤️

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Me too, I love hat program and Bertie Carvill has the purrrfect voice for it. :-)

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😻

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Hi Happylondon .

I have found my endocrinologist ethe best of the specialist for listening - I have thyrotoxicosis alternating with hypothyroidism. That is because I am on Levothyroxine 125 micg a day as my TSH is high. My TSH then will go low and a panic to get me off Levothyroxine as my TSH sometimes almost vanishes, then I get hospitalised. This has been going on since 2005 - The cause was taking Amiodarone for a very fast heart rate - VT and AF....Contains lots of iodine so it has damaged my thyroid gland..That is linked to my COPD, because Amiodarone was the only option to slow and regulate my heart - Can't have Beta Blockers and many other heart regulators, or it depresses breathing in asthmatic and COPD patients...

I see her every 4 months and she has found more that all the other specialists put together, my endocrinologist does a comprehensive blood tests, twice in the 4 months before my next visit. Chest clinic was good also, but Cardio consultants and I have are not that good.

i used to be on 5mg steroids daily. I was took of as it can and does thin bones, I have that in my fingers, a DAXA SCAN has shown no real problems with my bone density despite prolonged steroid use, I only use them now for acute COPD Flare ups.

Nice photo, We have a Camellia flowering next to our front door in January, spring is not far away and all the bulbs will be out, best time of the year..

Sorry about the essay, I typed it so I may as well post it ;-)

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Hi Ern

Thank you for your post. It is a very interesting read. 😊

I see, meds and side effects..it gets complex..sorry it got messy.

Great to know you have a good endocrinologist too.

You seem to have managed to wean yourself off the 5mg steroids..how was that?

I found the 20mns on the treadmill tired me out today. I didn’t even do my 30mn swimming..I had to use my relievers throughout the day and I still felt breathless so I just watched football 🥅 ⚽️💕on tv..

Pleased you like the photo, I am certainly looking forward to Spring!!!

Wishing you well x

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Happylondon - My GP of 20 years retired, my new GP decided I should double up on inhaled steroids and stopped the daily tablets, which causes me to have fungal infections. Not helped I have had three flare up since Christmas, so I have used three emergency packs..

I just walk for exercise these days, mind you I live in a village, so that is no chore as I am surrounded by trees and fields...

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I see..that is a problem yes..it sends me back in time..I suppose being on daily steroids has a price but those flare-ups on rescue meds used to wear me out..

Sounds like a pleasant place to live in..

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Another beautiful photo. I hope you had a good Sunday. Good luck with your steroid reduction. I found that a very slow reduction over several months worked for me, although I’m stuck at 7.5mg.

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Thank you for the info Helen, very useful indeed 🌸🌷🌺 Have a good day xx

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I take 40 ml steroids daily

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Hi Grace

Ok..How does that feel? I take 40 when I have a flare-up..it makes my heartbeat fast..gives me bouts of insomnia if I don’t take a sleeping pill..

But it works like a breath of fresh air..

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