Forgot pred!

I KNOW, but I felt so good I thought I'd give my body a rest.😏😀  I won't do it again!

I'm at 2.5 and was thinking that when I get to 1.5 I'd cut the tablets but do alternative days with 2 for a couple of weeks but I'd be interested to know how others do this. 

When I had to drop to 1/2s I cut the Is with the point of a very sharp knife.  There is some waste but so what?😀

A glass of milk might be better - but if you don't have any stomach discomfort it doesn't really matter.

You can get a cutting device from the chemist - and it doesn't matter if you get a slightly uneven pair of halves, it will even out. And anyway - all you want to be taking is "less than the last dose". 

It's because the cursor isn't registered in some way - I do notice when it is pale and fiddle with it. It is a nuisance if you don't notice and sometimes it takes a few deletes and restarts to get it "dark"!!!!

Hi Suzanne, nice to hear from you again.  How are you getting on now?  See you on FB occasionally.  You seem to be enjoying your art world.

Hi Constance, yes my art keeps me going.

There's just so much going on at the moment, heart problem (probably minor but being investigated), high BP and possibly diabetes (Will get results tomorrow), apart from a current quite persistent chest infection. It's really a domino effect, which I link to being on a high dose of pred for so long. Other than that, I'm fine! 😁

Hi Susanne, although it feels high 15mg is on the lower end of the spectrum so don't feel too bad. At the end of the day it's what keeps pain away and you sound as if you have plenty of other things to worry about while your body heals. Thank God for art! 

Hi Celia, I have had several flares over the past 2.5 years and have been up to between 60-40mg pred many times and then begun the slow taper down until the next flare. I have GCA and it's only recently that I have been able to get down to 15mg. My immune system was severely compromised because of the high doses of pred and so I was open to chest infections which meant hospital stays where they would up the pred again. The many chest infections led to a lung condition called bronchiecstasis. During one of my hospital stays, I also managed to pick up a very nasty bacterial infection which lives permanently in my lungs now, called pseudomonas. Having been very inactive during these last couple of years has led to weight gain, no doubt resulting in high blood pressure which has damaged my left ventricle.

That's why I call it the domino effect!

Um - is there any evidence that it is that way round: that the infections caused the bronchiectasis? It is far more likely that the bronchiectasis causes the infections. It is in this household!

Eileen, according to my pulmonary consultant, and reading up on bronchiecstasis, it is often caused by repeated chest infections, and especially if you have a weakened immune system which makes your lungs more susceptible to tissue damage.

Of course, once you have bronchiecstasis, you are even more at risk of infections.

Good name for what's been happening to you! You've obviously been through the mill. The name of your lung condition sounds like a dinosaur. ..I do hope some of all this starts to unravel in a good way - getting down to 15mg is a bit of a triumph. I would so love a magic wand!

It does, doesn't It! - bronchiecstasis.

I'm actually lower than 15mg pred now. I originally referred to 15 on this thread when talking about when I forgot to take my dose. I'm now at 10.5mg pred and doing ok, so fingers crossed that I can keep tapering down. As the song goes..."always look on the bright side of life". 😁

That is so brilliant. Just the feel that you're reclaiming part of your body! 

My sister has the condition and the pseudomonas. Like you she is prone to infection and uses a nebuliser morning and night. She has also had surgery and treatment for 2 different cancers but is amazing. She was a health professional and her GP and consultant leave her to decide when she needs a top up antibiotic. It must be very difficult to have PMR on top of all that you have. I hope the reduction in steroids goes smoothly.

Thank you Silver.

Your sister certainly has enough to cope with.

I have GCA, hence the high doses of pred. (I did have PMR before GCA)

The trouble with having pseudomonas as well means that you need different antibiotics when it is active, which can have some nasty side effects, so my GP always starts me with standard antibiotics and if they don't work, a sputum sample is tested and I may then move on to the very potent antibiotics. Luckily, my GP is very aware that treatment needs to start quickly, so she always squeezes me in if I need to see her.

GCA on top of everything else is even more difficult. It sounds like you have a good GP. I'm aware that it needs to happen quickly. My sister has an antibiotic prescribed to take with her when she goes on holiday. She goes abroad x2 a year for a reasonable spell and the sun seems to agree with her. She is taking the chance when she is able and can get insurance.