One little tablet, one massive difference.

[canalchris]

Hello folks, for those of you who may remember me its Chris here, live from sunny Portugal. This is our third winter down here on the Algarve. Our narrowboat home of 11 years was sold last summer, also the motorhome when we returned from Portugal last summer. We used the proceeds to buy a static caravan up on the North Wales coast near our eldest son and family. Accomodation down here is now an ex touring caravan , set in a plot with the awning erected and a large steel tubular frame with canvas cover over the whole lot.

Right there's the update regarding living conditions ,but what I really wanted to let you know is the difference in my health through taking just one 5mg prednisolone tablet per day. My health has been in steady decline certainly over the last 3 years , I gained a little respite in the winters down here , but then suffered exacerbations one after the other when we returned back to the UK, and came back down her really quite ill. I went to see our local respiratory nurse 2 weeks before we left Wales last Sept, I explained to her that in the 3 and a half months back in the UK I was taking my fifth emergency pack of co amoxyclav and preds.

I suggested to her that the frequency of these exacerbations could possibly be being caused by the frequency of taking large doses of preds for 5 days, the suddenly nothing, I asked her if the anti inflammatory effects of taking one 5 mg preds every day would be far more effective. She whole heartedly agreed with me but said sh could not sanction this treatment, neither could my GP. I would have to make an appointment to see a specialist . ( this was two weeks before leaving for the winter.).

I am not advocating that anyone should do this ,but I first used my two stockpiled emergency packs of preds, and then paid to see a doctor down here in Olhao, he absolutely agreed with my idea, and prescribed enough tablets for 4 months supply AND replaced my two emergency packs .

As a consequence of doing this ,I am more mobile now than I have been for 2 years, I am doing small household chores, my appetite has increased amazingly because I can breath so much better now, I don't need to eat like a bird. I ragularly have breakfast , lunch and quite a large evening meal. I can walk with a wheeled frame several hundred yards to the bar for an afternoon beer. And take the dog for short walks.

My weight in the last from just over 8 stone, ( which looked very scary when you think I am just over 6 foot.) to 9 stone 10 pounds 6 ounces yesterday. And compared to before I started this treatment I feel fantastic.

I guess what I am saying is ,you know your own body, you know your own illness, don't be scared to put your ideas to your medical people. I have gone out on a limb a little, and I am intelligent enough to have read as much as possible about the dangers of prednisolone and the other co cotasoid steroids, ( diabetes, glaucoma.) but I think quality of life versus quantity wins hands down any day.

So there you are, as I said before this is just my experience, I am not advocating anyone should literally follow my example, but think what works for you.

STAYWARM, and GET RID OF THE MUCUS every morning.

Love and best wishes, Chris.x

[knitter]

Hi Chris, I have been prescribed the same by my consultant, but I still have to increase the dose when I have an exacerbation.

It's just that you have to balance the risks and advantages....my bones are thin for one thing.

I am glad things are going well for you in Portugal, I remember when you had the canal boat.

Take care

[Toci]

Hi, Chris. It is lovely to hear from you. I am glad the pred is doing you so much good (I can't take them because of bad side effects) and I believe that you are so right in saying we know our own bodies better than anyone else. Power to you down in your corner of Wales! xx

[pollyjj]

Hi Chris good to hear you have found something to help you improve your life a bit, I envy you living in Portugal, wish I was there.

It would be interesting to hear of any others who do the same.

take care Chris

polly xx

[sassy59]

Hi Chris, l do remember you and your wonderful boating tales. Glad you are doing better now.

Pete has been advised to decrease his pred intake from 10mg to 5mg by a hospital doctor. Interested to see if that works out well.

Enjoy your time spent in Portugal and Wales. Good to hear from you.

Xxx

[scorpiolass]

Lovely to hear from you. Seems you have got on the right path to avoid repeat infections. I like your Welsh home it must be like living in the woods. But Portugal sounds great. X

[canalchris in reply to scorpiolass]

The picture is of the caravan and awning in Portugal. The caravan in Wales is a static caravan like you get on holiday parks in the UK.

[scorpiolass in reply to canalchris]

That's really good , it must protect you when the sun is fierce.

[Pentreath Volunteer]

Hello Chris, lovely to hear from you again and even better to learn that your health is so much improved.

[soulsaver]

For info. & just to balance the view:

I have a few inflammatory problems (bursitis, arthritis etc) in addition to whatever in my COPD, and I know in the short/medium term that 1 pred a day would help how I feel. But I'm also aware that one of the side effects is osteoporosis. When people taking them continuously have a fall, they often break their hip/shoulder or whatever. 2 close relatives of mine died in hospital after their falls and one shortly after.

So not for me yet.

And if you start underweight, weight gain is ok for a while...

Be careful, keep well.

[canalchris in reply to soulsaver]

Hiya soulsaver, I am 61 now, and have just started the 1 per day routine. If I may be looking at brittle bones in a few years time, ( but that of course is a MAYBE) over being able to breath easier, eat easier, be more mobile and have a vastly increased quality of life, I'll take my chances, thanks.

I do appreciate your points, but I guess it does come down in the end to quality over quantity. Being at risk of breaking bones , potential diabetes, or glaucoma over not being able to breath properly is a no contest.

Chers

[pergola]

So pleased to hear, Chris. So many of us have disappeared. I am pleased that your health is better. For me, my health is better just because I have moved down to the South Coast and I take azith. caps. Still think of my holidays on the canals. Timothy West and PrunellaScales have done an enjoyable programme on the Canals. Love Pergola

[casper99]

Hi Chris it's lovely to here from you again.

It looks so cosy where you live, really relaxing.

What you've said about the daily pred, has brought back a memory about my Dad. He was diagnosed with severe asthma in 1985, when he was 63 and had to take early retirement. He lived 180 miles away from me.

He knew very little about his asthma and was hospitalised 2 or 3 times and I used to beg him to come live with me but, he wouldn't, he was a very independent man.

Anyway, on one of his long stays with me, he had an attack and we whisked him to A&E.

The docter asked him, how he took his supply of preds and he said he just takes one a day and it usually keeps it under control. He got got a right telling off about how dangerous it was and told he must stop doing it.

So, reading how the docters are now realising the benefit of taking it daily, reminded me of my Dad and his self medicating.

I'm pleased to hear your feeling much better and with your increasing appetite, you are bound to get stronger as you regain your weight.

I have started taking a protein drink that people use for gaining lean muscle while exercising because I have muscle wasting in my legs.

I don't get much exercise in winter (I hate the weather.) but exercising doesn't matter with this powder because it can also be used as a meal replacement.

It's delicious and my muscles are starting to feel much stronger already.

Take care Chris xx

[peege]

How brilliant to hear your news Chris and see your home in Portugal. Loving the sand - if that's what it is in the foreground.

Now you're stronger perhaps you can do some PR exercises in the chair? To build your strength and stamina (I should cocoa, I need to do some myself)!

I often wonder how you are doing and agree with you, quality over quantity any day.

I spent last winter on the Côte D'Azure near my son. The weather wasn't great (and I lost my dear dog after a month), often wet & wild so you're right to go further south. My health was certainly better down there but being single it was a bit lonely. I could see it would take me years to integrate socially. Never mind. I've moved out of London pollution to Gloucestershire where the air is cleaner.

Very glad you're enjoying life - how's the dog?

[2malinka]

HI Chris

Glad that the prednisolone is working so well for you. I have severe COPD and whenever I have taken this steroid I become very breathless and flushed. Just goes to show that we are all different despite sharing a horrible disease. Hopefully, I will find something that helps me.

Look after yourself.

Malinka

[rubyred777]

Hi Chris

Lovely photo.😊

Good to hear you're doing so well.

Always nice when you get your meds right. Your little dog is so cute! What her/his name. Don't be a stranger! We love hearing from you.😀

Rubyxx 😊 😊

[canalchris]

That's Toby,he's nearly nine and a half. Next to Lilian he's my bestest pal.

[Dragonmum]

Chris I agree with you completely. If it's a choice of immediate well-being against something which may or may not happen in the future then it's a no-brainer for me. We only have the present so let's make it as good as possible - yesterday's gone and tomorrow may never come! So glad you listen to what your own body is telling you and I wish doctors would realise there is no " one size fits all" treatment - we are all different and react in different ways. I love your dog - a real cheeky chappie JRT, and pleased you look so well.

[bayleyray-uk]

Hi Canalchris,

I started taking 10mg of Preds. on January 1st after seeing my consultant and asking him if I could he ok'd a three month trial. The effect on my coughing and breathing has been fantastic. For the previous two years I had been literally dragging my body around having to use oxygen for anything physical. I have been on maintenance antibiotics for a year and that had calmed down my exacerbations but it did nothing for my coughing and lack of oxygen. Now my stats are up and I average about 94 instead of 88 of 02.

I am just finishing my first physical rehab course and it has been brilliant and the nurses have arranged for me to go for another oxygen assessment as I have done so well.

I know full well there is the down side to preds. and as my consultant said if I was younger (I'm 67) then it would be a different matter. Yes there are side effects which I wish would not be happening but at the moment they are reasonably under control except my craving for Brie which is out of control at the moment and that I'm a bit like a hyperactive hamster at 2 in the morning but hey hubby is going to fit me a wheel in the front room so I can whizz around it eating Brie to my hearts content.

Cheers,

Sue