Part Two for patient readers

In fact it is worth noting that 5mg of prednisone equals 20mg of hydrocortisone. It stays longer in the system so is more effective for lung disease sufferers.

She explained that the biological dosage was between 5 and 7.5mg of prednisone and I better start on the higher dosage because I was so low.

So she gave me a prescription, a handbook and said bye. Well I was stunned I had to self-manage on something I had never done before.

So went to the GP and asked for help. He said we have to build you up first so you start on 20mg, reduced to 15mg when you feel better then 10mg when you are ok you go on 7.5mg and use your handbook to manage your stress levels.

In fact for example if you go for 30mn exercise you have to take 1.5 your basic biological dosage of 5mg. It isn’t where you are at. The base is always 5mg. That I also learned.

If you have a small op like I did I had to take 20mg for 2 days and decrease rapidly. I said what is rapidly?? Well by 5mg every 2 or 3 days but then I had the 2nd op 2 weeks later so I had to start that whole process again.

Now when you are sick with a chest infection for example you follow doctor’s orders because your cortisol level is already well covered by your biological dose so what is important is that you have a steroids intake that is beneficial enough to reduce the lung inflammation and ask him how to decrease precisely.

As I have had 2 ops and now a chest infection I asked for help again, how much should I take, for how long and how should I taper down.

The lesson is that you must consult on your steroids intake when you are sick if not you will inevitably feel the drop due to the adrenal insufficiency. You may also mistake it for a drop in adrenal insufficiency but it isn’t, it is the infection, the antibiotics fighting the infection that will lead to fatigue.

Lots of love everyone 🌺

You deserve a picture if you read it all 😃

One of Bea’s: Geneva Lake

Fran xx

[sassy59]

Wow Fran, I love the picture and I did read it all as I’m intrigued by your steroid intake.

Pete takes 10mg of pred every morning and ups that dose to 30mg if he has a chest infection. He then tapers down gradually to 10mg.

Thank you for explaining what you have been going through, I’m glad I read it.

Wishing you better days ahead.

Lots of love xxx 💖😘💖

[Hidden in reply to sassy59]

Hello Carole 🌷

Thank you for your answer 🤗

Bea likes photography 😊

Peter’s treatment sounds similar to mine although they don’t want me above 7.5mg on a regular basis because from 10mg onwards you get risks, cardiovascular, weight gain and diabetes.

As my last blood test was 26 October, they gave me the full blood work in hospital and results are horrific! ☺️

I knew I had gained 1kg a month since September despite keeping to the prescribed diet. Mind you with the ops and the chest infection I have already lost 2kg. Still my cholesterol has jumped to 9.2 I am now at elevated risk of a cardiovascular problem. GP will test again in a month so I have increased my effort to forget Swiss chocolate 🍫, beer and wine 🍷 although I was being very reasonable. He will put me on statins in a month.

My glycemic index has jumped to suspicion of diabetes !!😮

So they tell me you have to weigh the benefits to the side effects, still it gets boring to be good all the time. I have never had that problem before. Well it is out of my hands really..

Lots of love 💗

Fran

[Yatzy in reply to Hidden]

Oh dear, Fran 😬 fancy having to be good all the time 😇 Maybe things will settle just a bit as you recover from your recent eye operations and chest infection. Your body must be struggling a bit to recover.

Get well soon 💕 xxxx

[Hidden in reply to Yatzy]

Hi Penny 💕

I think so too. I am flat out, finishing 7 days antibiotics tonight, still on 30mg of pred a day and not feeling things are over. I’m going to try to see the doctor if not I will have to go to the hospital but I don’t like it much. Lausanne is far for a start 30mn in a taxi, of course you wait and you never know who you see. Then I have to tell them about LAM and what it is etc, the whole idea tires me out in advance 😃

So phone, shower and dress and off!

Have a good day Penny xx

Fran

[sassy59 in reply to Hidden]

Oh Fran, what a pain! I know you can do it and I am thinking of you all the way.

Pete has weight gain and heart disease. He is already on statins. He also has osteoporosis due to long term high steroid use.

You are being well cared for so that’s a good thing.

Love Carole xxxx 💐💜

[Hidden in reply to sassy59]

Ahhhh interesting.. poor Pete...yes I forgot about my vit D levels dropped below the norm too. What do they say these days Collateral damage!!

Thanks Carole 🌺😘🌸

[Susan1200 in reply to Hidden]

Now you mentioning Swiss chocolate,I want some, hopefully I can go home next month then I can bring back lots of Swiss chocolate yummy.

[Hidden in reply to Susan1200]

😋There’s a box of Lindor on my bedside table which I am only allowed to stare at!! I really like dark chocolate with my coffee!

[Susan1200 in reply to Hidden]

Hahaha 😀 I just have to be patience, I have pneumonia and infection so trying to get better to go to Switzerland for a few days,I hope your feeling a little better.

Ich wünsche dir einen schönen Tag 🌹

[Hidden in reply to Susan1200]

Oh my dear Susan, i think mine is a pleurisy, we ‘ll deserve our chocolates by the time this ordeal is over 😊

Ich auch! 🍫

[Susan1200 in reply to Hidden]

Hi Happylondon,how are you today ?

[Hidden in reply to Susan1200]

Hello Susan,

Thank you for asking 😊

Exhausted..went to the doctor’s, sent me for an xray, waiting for the result; definitely a bronchitis maybe more, the inflammation presses on the pleura and the rib cage that’s why it is painful.

I have multiple cysts so it will be difficult to see what happened on an xray although I could show him where it happened. When a cyst blows up it creates air bubbles in my airways, which is why I have dyspnea or breathlessness.

So I learned a lot!!

Also as he looked at my February CT scan to determine where the other one could be he mentioned there was a

very large cyst by the heart, a news I could have done without! So no pressure, no weights, no flying etc.. a life of leisure then 😉

So I have 7 more days of another antibiotics and nebs and mycostatin to use after the nebs to avoid oral thrush.

I have just finished nebulising and I am

under the covers thinking about making dinner!! In a minute! 😃

And you? How is your pneumonia progressing?

Take good care of yourself xx

Fran

[Susan1200 in reply to Hidden]

Thanks for replying, poor you it must be awful for you,I really hope things will improve for you soon .

I am feeling ok ,at least my Oxygen levels have improved, but will stay home until the end of the week.

Please take care Happylondon.

[Hidden in reply to Susan1200]

Thanks 💕 you too x

Fran

[Yatzy in reply to Hidden]

Oh poor Fran! ❤️💛What a list of problems to deal with. I don't know how you manage to stay so positive.… but long may it last. Such an asset for dealing with things. Lots of love to you 💜🌺❤️

Penny xx

[breatheeasy1]

Hi again Fran, I also enjoyed reading that (though I confess I read it through a few times😉) and it seems a shame that we are left to our devices with such complex dosage management! Sounds like you have a good team of doctors and your head screwed on well though 😊.

I hope you're starting to feel a bit better now you're home, and had a good rest yesterday 💐

[Hidden in reply to breatheeasy1]

Hi Anne,

So complex! How can one self-manage that? After all it is a medical task and Im only a patient. And obviously I haven’t done a good job of it so far if not I wouldn’t have such poor blood results so I had to ask for help and ask again 😃

Just had a top to toe self-massage with my Repair essential oils, insisting on the pain by the sternum, I had to take a couple of paracetamol during the night, it just feels like a tear but I couldn’t sleep comfortably on my side. It will pass..

I will just have to watch football in bed 😃

Lots of love sweetheart and don’t forget the healing meditations 🧘‍♀️

You know my morning mantras 😊

I am grateful

I am kind

I am well

I am enough.

We are enough.

Fran xx

[breatheeasy1 in reply to Hidden]

I think you've 'self managed' incredibly well! I don't think it's right they expect you to cope with dosage adjustments like that, given you've no pharmaceutical qualifications! But then that seems to be the way things are going these days. Online doctors, websites for medical.advice and self diagnoses. I'll get off my high horse now...😂

Sorry you had a bad night honey, I really hope that cyst damage doesn't take long to heal...sounds very painful. I have had some bad nights too so I know what its like to wake at 4am in pain but with a long night still ahead...😕.

Stay in bed for now and watch that football! I am 'helping' my two year old with junk modelling. Actually I am trying to stop her from covering herself in sellotape😂. She's happy enough though at least😉.

Thanks for the reminders on the mantras, it all helps 😉.

Love and hugs xx

[Hidden in reply to breatheeasy1]

Exactly, this new robot trend and all 😃have fun with your girls 😘

[Hacienda]

Thank you for explaining Fran, I will go armed with this advise to my Consultant on Monday, I hope she listens ?

Hope today you are feeling Better. xxx

[Hidden in reply to Hacienda]

Definitely hope she listens, may need to repeat yourself if she doesn’t 😉

Que le pasa bien Carolina 🤗

[Hacienda in reply to Hidden]

Gracias Carino . Besos XXXX

[Yatzy]

Thanks for that useful info, Fran 💞 You’re back to your usual helpful diligence for us all....hope that means you’re feeling a bit better today.

Perhaps my adrenals are basically ok, guessing, and that’s why I go into orbit on prednisolone 🚀 I’m dithering over starting them again now, chest struggling a bit, I always advise prompt doseage but I’ve only just come out of the mood changing relaxer pills for my back injury, and can’t quite face the same again! A decision today! Might get overexcited for the Manchester derby though ⚽️⚽️

Hoping you’ll soon be well, my friend 🍇🍓🍌🍊

Love Penny 🌼☀️🌼 xx

[Hidden in reply to Yatzy]

Hello my dear Penny,

Getting there..4th day antibiotics..It seems they were some cases of pneumonia when I was in the home. Probably lucky I had my pneumo jab it lessened the virus.

Im thrilled because Bea has gone to get my first pair of varifocals and I hope I can see again!!

Well prednisolone used to do that to me but now honestly I don’t feel a difference on 30mg..I expect your body just get used to it when you take steroids every day..

You are right about prompt intake. And I know how you feel about taking more tablets! You know your own body Penny, trust your intuition..

This infection took me by surprise if not I usually feel it coming and try to stop it.

Ok I will watch that match too. 😃 I haven’t checked today’s programme yet. I have been looking with my magnifying glass at house deco magazines Bea bought. She is on a mission I think. She gave me little post-its I am supposed to stick on the page to see something I like!!😃

Lots of love Penny 💗

Fran

[Yatzy in reply to Hidden]

Very wise advice, Fran, as always. Thank you ❤️. I think the intuition guide idea is a good one. I think we get to know, don’t we?

Yes, how fortunate that you were ahead on your pneumonia jab...very fortunate indeed. Well done 🎉

THE match kicks off at 5.30pm our time....6.30 yours?? I must sort out a sports channel here, still struggling to coax NowTV into action, and then it will be just subbuteo on the iPad!! 😂. Excuse all spelling errors, I can’t control changes on this app!! Good luck with the new specs....what a difference they should make 🤓

Love 💕 Penny xx

[Hidden in reply to Yatzy]

Thank you Penny!! Yes 6.30 pm here it is on SFR sport channel I see. Hopefully I will be able to watch it on tv with my new glasses 👓 😃

Enjoy!! 💗

[Yatzy in reply to Hidden]

Gosh, Fran, I hadn’t spotted that 👓 emoji!! Perfect! 💞 xx

[skischool]

Such a complex lifestyle for my happy friend,having to predict what meds you will need on almost an hourly basis.this Lams business is the stuff of nightmares me thinks,thank goodness you have the support of the lovely Bea and the company of the charming Aria and a very active and positive mind,now all you need are those 'specs' and you can throw away that monocle and enjoy the light of day,may it be a happy one..............love Skis and a one eyed cat xx

[Hidden]

Hi Skis 🎿 and Scruffynounette

Thank you for caring my friend 😊

Well normally I am stable, I had a good winter. I think with Dad passing away, then both ops I wore myself out, caught sthg in the home where they were all going down with ailments.

But great joy 😃Bea brought my glasses, I’m getting used to them already!! I can read!! But my eyes are red and tired. I will keep them for that derby Penny is looking forward to 😉

Happy day my friend 🌻

Fran xx

[skischool in reply to Hidden]

Whoopee,welcome to the varifocal world,all will be revealed in stunning HD images and you will be awash with visual information,so much so that a glass of vino will be required to dampen your excitement,but alas no chocolates are allowed for fear of hitting 10 on the cholesterol richter scale.

Eye Eye happy :)...........skis and an all seeing cat xx

[Hidden in reply to skischool]

Haha..got a box of Lindor chocolates a friend brought me and it is staring at me and daring me 😃 on my bedside table. It will remain closed as a symbol of the torture to come!! 😂

Although the can of guinness in the fridge was irresistible during the derby but Bea said half only! So I said yes Mum and it was a real delight, the forbidden fruit and all that!! 😇

So I see Chelsea-West Ham is on tomorrow..👀👓🕶I am now ready!!

Xx

[Kitten-kat23]

At least you have found something that helps. I wouldn't like to have to do the maths. How are you?

[Hidden in reply to Kitten-kat23]

Yes, thank you 😊 took a while..Poorly..but got my new varifocals after 4 wks without glasses!! Joy!! 😃

[Sillysausage234]

Hi fran,I read it all ,too complicated for my frazzled brain though😊,hope you are ok and love the seagull photo,

[Hidden in reply to Sillysausage234]

Sorry Alan..was aiming at adrenal glands insufficiency sufferers who have a lung disease.

Glad you like the photo 😊

[Annie31]

Clear as mud to me! I have a job to keep up with inhalers as to how, when and in what order! All the best!

[Hidden in reply to Annie31]

Yes I know what you mean 😃 thank you Annie 🌸

[Izb1]

Hi Fran, bet you were so glad to be home at last and back in your own bed, oh the joys. Cant believe how poorly you have been and just hope that you pick up quickly, which I'm sure Bea will take care of. Love the picture. Not sure I could work out the medication though. Take care and rest up. Irene x

[Hidden in reply to Izb1]

Thank you Irene 🌻yes glad to be home laying on the couch with a bunch of newspapers and magazines that I can now read 😊

I’m taking my pleurisy natural mix and rubbing essential oils. Even it maybe placebo who cares if it works because that Clarithromycin 500 I am taking is not doing the trick. 2 days of it left mind you, just keeping my fingers crossed 🤞 Fran xx

[Izb1 in reply to Hidden]

Your natural mix and essential oils sound good, I rather would use those than any drugs, alas we do sometimes need the antibiotics. Keep well x

[helenlw7]

Your booklet sounds quite good, I just got a sheet of paper and told orally to double my steroids if I had to go to bed sick! I was also told to inform my local ambulance service incase I was in an accident, buy a medic alert bracelet with my meds on it, and always carry a card that says I am steroid dependent!

[Hidden in reply to helenlw7]

Oh and I was moaning!! I will write out the part in question for you because it is in French! Yes I have a card too but no bracelet although everything is computerised here so they know what tablets I am on. I am not ready to go anywhere for now 😃

Has it happened then? I mean did you have to have the hydrocortisone injection etc?

[helenlw7 in reply to Hidden]

I don’t think you were moaning, just saying how life is for you at the moment! I had the synacthen test last January. My cortisol was low. I was already on steroids for my lungs and joints. I’ve basically been left to get on with it!

[Hidden in reply to helenlw7]

I know you didn’t 😊I just thought I should be grateful to have a good guide when you were only given one page and oral instructions!!

I have to find the link if not admin will reject it and I translate for you. It is only advice of course, as I said I can’t get on with it when it doesn’t work so back the doctor’s

[Hidden in reply to Hidden]

sgedssed.ch/fr/

[helenlw7 in reply to Hidden]

I would love to have a copy of your booklet if you can find a way. Or perhaps you could email it if HU won’t allow it. Because of my lack of info I usually just double my steroids when I’ve got an infection- not sure that’s right but it works!

[Hidden in reply to helenlw7]

Send me your email now by private message and I take pictures and send it to you. I even made a photocopy for my medicine bag which I always carry with me..

[garibaldon]

That’s interesting. When I get a chest infections my Doctor prescibes 40 mm of prednisone streriods for 5 days I’ve used this dosage over 20 years when needed. There have never given me any long term side effects, as I’m aware. They do, however prevent my dropping of to sleep at night. Other than that there a godsend when I’m ill

[Hidden in reply to garibaldon]

Pleased for you 😊Interesting but I am not strong, I have a rare pulmonary disease so I suppose it affects me somehow..

Thank you for sharing.

[Shirleyj]

Sounds complicated, would be good if they could produce something that gives you your levels, as in diabetes, then you would definitely know when you need topping up with steroids.

Your amazing fran, you just take everything in your stride x🌿🌻🌼🌷🍀

[Hidden in reply to Shirleyj]

Yes but it is such an individual thing..

Well Shirley we swim or we sink 😃 and Im not ready to sink 🌷

[garibaldon]

Happylondon, when I joined this group a short time ago I was feeling a bit down but having read some of the posts submitted on this forum I thank my lucky stars .

Ive had COPD for 40 years plus other issues. I respect and and admire the strength and ability of member in seemingly a far worse situation than I. May wish you all my very best in coping with your problems.

[Hidden in reply to garibaldon]

Thank you so much for your support 😊

[Susan1200]

Interesting, thank you for sharing.

[donut43]

Love the picture Fran. It is as good as the tablets !!!!!! Interesting to hear your story.

Dan

[Hidden in reply to donut43]

Thank you Dan! Photography lifts my spirits. My daughter takes great pictures with a proper camera, I’m more an iPhone photographer 😃

Bye for now!

[Zachary252]

My Chest Consultant supplied a 2 page statement of do`s and don't`s when taking Prednisolone . It`s titled What are the Sick Day Rules . I assume this document is also available from GP`s etc .