Hi to you all.
Not posted for a while. I know its no excuse at all for not writing, but maybe it's because I am feeling very much better at the moment and almost got my life back.
Since I last wrote on here, I have reduced the Preds to 5mg, and touch wood I have had no pain or flare ups. I seem to be feeling so much better in myself too with each reduction, which is great.
Like many others I would like to get off the steroids as my PMR allows it, but I realise that I could end up taking a very low dose for quite a long time.
I know everyone is different in their own personal needs, but my questions are:
What is considered to be in general a 'reasonable level' of preds to end up taking?
And how long would I be expected to take it for?
Gilly.
Hello Gillybee
It's good to hear from you again and especially to hear how well you are doing.
As for what is \"considered a reasonable level of preds to end up taking\", a very cheeky answer would be \"none\"! :wink: Seriously, however, most experts agree that when you reach a level of around 7.5mgs that is similar to the dose of natural steroids that your body will have been making daily prior to treatment. And anything below this dose is thought to produce less side effects in the body. So for you to have reached 5mgs is good news indeed.
It is generally recommended that reductions from 5mgs are done more slowly (the percentage reduction is so much greater at these doses), remaining on each 1mg reduction for about 3 months.
Hope this helps and that you continue to have a smooth path to recovery.
MrsO
How great you have done so well! How I wish we all had such succes stories to tell!!
There seems to be a bit of disagreement about the exact level where the steroids become of little concern - and it is also going to depend on the person since noone suffers all the side effects and some suffer almost none. People with diabetes and other ailments obviously need to try to get off the steroids more than someone who has no other illnesses and takes nothing except the pred.
Rick (over on the other forum) has just said his rheumy considers the risk of osteoporosis as being negligible at below 10mg. I spoke to a rheumy here in northern Italy yesterday who considered ny current dose of just under 9mg per day as perfectly acceptable for a longer period saying \"some people need that, others don't, it all depends\" and gave no indication he would be trying to force a reduction.
From 5mg down, as MrsO says, a really really slow reduction is a good idea and she has done really well on such a reduction. She has mentioned elsewhere that her doctor wanted her to stay on 5mg for months and it has just occurred to me that maybe he has found that by doing that your adrenal function returns nearer to normal as the dose you are then taking is lower than the body needs normally and this then smoothes further reductions. I've been using alternate day therapy for more than a year now - which is the sort of time they say it takes after stopping steroids for your adrenals to recover - and ADT also allows the body to escape much of the effect of the steroids. After a good year I noticed a difference in how I felt in the mornings, even the morning when I was due the next dose, 48 hours after the last.
Certainly having got this far it would be lovely if it continued as smoothly for you! The best recommendation though has seemed to be: Don't rush things! Good luck - after all, you may be one of the group who are able to keep reducing steadily and do get to zero. :lol:
Eileen
Well done gillyb. It does us all good to read stories like yours and it's very helpful when someone asks the questions we alll want answered. So thank you and good luck and thanks to Eileen and Mrs.O for the answers.
I'm persevering with 4 and will stay on that for a bit as am certainly not pain free partly because I keep straining my back muscles but also PMR in neck and thighs.
Hope this is not premature but thanks to whoever recommended Ice Power Pain Relief. I finally bought some and after two days I think there is considerable improvement in the strained area of my back. Tried some on my neck and that feels easier, too. Can it work on PMR? Was it going to feel better anyway? Fingers crossed.
Wouldn't that be nice! Glad you're feeling better though!
Eileen
I am now on my umpteenth reduction plan - I have totally lost count of the number of times I have had to pick myself up, dust myself down and start reducing Pred again.
Should I be able to get down to 5mg I will happily stay there for life; I will be 67 this year and won't look to be steroid-free. Any reductions under 5mg will be a bonus.
Nefret
Hello Betty
It was me with the Ice Power pain relief I really do think its great I took it on holiday with me just in case my knee didnt like the travelling again but it was fine
Gillybe My Dr said 5mg is quite a common maintenance dose for some patients I with my first bout went from 20mg to 1mg in a year and stayed on that for a year and no blips so I hope you follow that route ! I really hoped I would again but no such luck !
Mrs G