Waking up with a ten tonne head!?

Thank you Margaret.

I has a break a while back, went away for the weekend & forgot them. By Monday I felt just like you..I upped my dose too & re started & the relief was immense the next day 😊

Both of you - do please be careful missing doses whatever the reason. AFter being on pred for a month or two your adrenal glands have gone into "slow" mode and don't necessarily produce cortisol when you need it. Especially when under stress that can make a significant difference and can even be risky.

If you have a sickness bug do try to take the tablets - they only have to stay down for an hour and they have had time to be absorbed if they are the ordinary white sort. If it is more than just a day or so contact your doctor to see if they will give you an injection. And if you feel really ill - don't hesitate to call 999 and expalin the situation to them. Paramedics carry the appropriate injection for emergencies.

Just in case - put a pack of pred in the bottom of your handbag - do it now and then check it every few months to be sure it isn't out of date. Also, if you are away and have forgetten to pack your tablets, go to a pharmacy and speak to the pharmacist. They should always provide a emergency supply for a long term pred patient. I don't even go somewhere for the day without at least 24 hours of pills in a dosette box. Just in case - you never know where you might get stuck!

Thanks Eileen, I wont go without again. .I was in my 1st couple of months & not knowledgeable. The back ache from the adrenal gland stress was awful & would not wish that on myself again!

I've learnt so much from you guys on this site already 😊

One of the warnings you should have been given by both your GP and pharmacist was NEVER to miss your dose of pred, especially once you had been on it for a few weeks. They panic about us taking the stuff - but can't even use it properly!

I wish! Seen 2 docs, both went online to check. One said you'll only be on it for 2 weeks so dont worry. After 2 wks I went back, saw a different one who said oh no at least a year & dropped me from 20 to 10. Pain came back, I went back & he said increase to 15 for 2 wks & then go back to 10.

I've since discovered this advice is all wrong so I'm going to take the advice from those experienced, like yourselves & manage the dosage myself. Although maybe I should insist on a rheumatologist? As I havent been referred for years as they lost me twice!

Blimey - what was he looking up? 2 weeks? Nooooo! 2 YEARS at least. I suppose "at least a year" while utterly optimistic covered all angles...

Having got this far I'm not sure I'd bother with a rheumy if the GPs remain sensible. You never know - you might jump out of the frying pan into the fire!

Eileen H I was told not to take pred without eating first. Hence the sickness bug went on longer then I thought, I was too scared to take Pred as it gives you so many side affects on an empty stomach. I never thought of the consequences if you stop

Taking for any reason. I will also make sure I have a dose in my handbag when out.

Thank you for all your expertise and your knowledge.

What does DSNS mean when tapering.

Dead Slow and Nearly Stop

https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

I think really it is longer term use of pred without food that may pose a problem for some people. If you can manage a glass of milk or a yoghurt that is plenty for most of us - but not taking the pred is potentially riskier than taking it on an empty stomach. And I have taken it on an empty stomach with a sip of water - was fine.

Eileen, can I just ask, a more low level pain returns in the evening, mainly back & legs.

Would this indicate that pred needs to be upped? Or perhaps more staggered through the day?

Sounds like the antiinflammatory effect wearing off - it lasts 12 to 36 hours depending on the person. A lot of people find that about 2/3 for breakfast and the rest at some point later in the day sorts that out - perhaps take it a couple of hours before the pain would return? You have to find times so it doesn't mess up your sleep. Some people find taking some immediately before bed works - everyone is different so a bit of experimentation is called for.

Thanks Eileen! Tomorrow I'm going to try that.. it seems there's a positive answer & sound advice to every hurdle 😀.

Good luck to you on your RT journey btw. My hubby is recently diagnosed, although we're on a manageable road, although occasionally feels not so! xxx

Doesn't matter what it is - there will have been SOMEONE who has been there. I read every post on all 3 forums - and have gathered a lot of experience even if I haven't been there myself 

Wasn't getting them in the morning like that before pred but at least clearing within 30 mins.