Back to the sun.

[canalchris]

Hiya everybody, I just thought I would share with you all that has happened since my last post.

After seeking advice regarding taking 1 X 5mg prednisolone tab everyday as a maintenance dose I wrote on here to let you know that I felt the results were favourable. We returned to the UK in mid June for the British Summer and an appointment to see the consultant who's advice I had been told I needed before embarking on the one a day.

After explaining what I had been doing for the previous nine months in regard to the preds and the good results I had with slight weight gain from just over 8 stone to 9 st 10 lb 6oz, better mobility and no exacerbations, she promptly told me that I shouldn't have been taking the tablet, they caused all sorts of problems etc etc, I was to cease and desist straight away and take instead a low dose antibiotic 3 days a week instead. I was to attend for aCT scan and she would send for me in due course.

Within 2 weeks of stopping the prednisolone daily tablet, my appetite disappeared, along with my mobility as my breathing worsened. I started having panic sessions regarding the ct scan because I knew that I would not be able to lay flat on my back and hold my breath on demand when required. I suffer from mild claustrophobia when breathless so the ct room was never going to be pleasant and I don't like being without my glasses cos I am as blind as a bat without them.

Soooo here I am now ,I've cancelled the scan, started on an emergency pack of preds and antibiotics, started to feel somewhat better. I am weaning down the prednisolone dose as I used to do in the old days before NICE or some other bunch of fools decided that we were all the same and designed the 5 day program forms preds. Currently looking forward to returning to the warm climate and clean air of Portugal and a Belgium doctor, who although costs me £50 ish to see for 30 mins at a time treats me like the individual that I am .

One thing the British consultant did say though which May be of some interest is that she thought I would be OK to fly because my resting O2 blood levels hover around the 96-97 %. I won't be flying back for any further appointments with her though.

What happened to quality of life over quantity, I'll be 62 in Dec , I'd much rather have 1 more year of quality than 10 more of feeling like death warmed up existence.

Rant over. Enjoy the summer?☔️😎🇵🇹👍🍺🍺🍺

[Pentreath Volunteer]

Oh dear, what a shame that you had to go through that Chris. Hope your doctor in Portugal can get you back on track. The climate and treatment seem to suit you which is what is important.

[sassy59]

Great update Chris and interesting reading. Pete has been weaned from 10mg pred to 5mg now and is doing well. He has Azithromycin 3 times a week and is fine with that too.

You were doing well as you were so why change it. Yes steroids cause problems but quality of life is so important. Pete will be 65 in October and will have a great birthday, l will make sure of that.

You take care, stay well and do keep in touch. Xxxx

[Toci]

Hi, Chris. I am pleased you have been doing so well, sad that your consultant let you down and jealous that you are returning to the sunshine of Portugal. Do stay in touch. x

[knitter]

Hi canalchris, I have been taking a maintenance dose of pred for years....ok I do have side effects, but the alternative is worse.

Best wishes

[caroleoctober]

Hello Canal Chris, nice to hear from you again. I take 5mg of pred every day, tried to stop it a while back and just coughed all day and all night so started again and now only cough two or three times a day, usually after exertion. I had ct scan two weeks ago and worried silly about lying flat but I managed it and managed to hold my breath when asked. It was head to pelvis because I had a melanoma removed in June. Keep smiling

Carolex

[sarcoid1234]

I have been taking 5mg of prednisolone a day for 12 years and feel fine on it. It is now prescribed by sarcoidosis consultants at The Royal Brompton Hospital, London, a specialist lung and heart hospital, so they should know what they are doing! I also take azithromycin antibiotic as a preventative against infections, three times a week, also prescribed by the RB.

How nice to have a 30 minute appointment with your doctor/consultant, even if you have to pay for it.

[peege]

Hi Chris, so lovely to hear of your progress - and lack of since seeing the con. You rant all you like.

I'm no expert for sure but I cannot see how a tiny dose of 5mg can be so bad. I'd say the benefits far outweigh the risks in your case. Especially if your weight has improved so much. Mad. Agree with Sarcoidosis above, how fantastic to get 30 minutes with the doc even if it does cost £50.

I hope you're getting a decent bit of summer here, it promises to be good for the next few days.

Take care and safe journey 'home' when you go. Look forward to your next update. Peege