reducing steroids

Sorry Chammer, can't be more specific, but I have been told it can be as little as three months and as long as a year.

Maybe someone has a more definite answer. Here is hoping.

mrs K

Sorry new I had missed something - I have also been it does not even start until you are off them - but I must admit, I think that is a bit queer.

mrs K

Hello Chammer

I was told by my rheumatologist that when you get down to 7.5mg of Prednisolone that matches the amount that your body normally makes, which, he said, is why the side effects of the steroids then start to abate.

He also told me that Prednisolone does not completely \"wipe out\" the body's own cortisol (steroids).

From this it would appear that the reason we all find it so difficult to reduce when on the low doses (7.5 and below) is that either our adrenal glands are not yet back to their previous output OR the PMR/GCA is not ready to burn itself out - a very confusing situation and one, it seems, that even the experts can't answer!

One thing is for sure - if our body doesn't make enough cortisol to cope whilst reducing we will know by the increased pain and hence up the dose again. Also, if the body is not producing enough cortisol alongside the dose and you have to face surgery or trauma to the body, then it is imperative for the dose to be increased to make up for the missing normal surge from the adrenal glands at such a time.

As to your query re availability of a blood test to check the supply of cortisol from our adrenal glands once off steroids, I did hear about a friend's young granddaughter who was tested in hospital for the problems she was experiencing in trying to get off long term steroids. Also, I have read somewhere that an endochrinologist can test cortisol levels.

Maybe this is a question one of us can put to the rheumatologist at our next appointment - mine is not until February so over to all you fellow sufferers out there! Or, as dear Mrs K says, maybe someone else 'looking in' will have a more definitive answer.

Sorry, Chammer, if I've gone on a bit in answer to your very simple sounding question but it seems there is no simple sounding answer at the moment, although I hope I have been able to go some way to making the situation a bit clearer an not confused you even more! :?

MrsO

Funny enough I saw a gp last week, not my normal one, when I had a minor crisis.... he mentioned in passing that the body produces about 5mg of steroid! So which is it you medics... 5 or 7 and a half?

Either way, it seems to be around that point everyone has trouble cutting down. I came off 15mg (for 3 months) very quickly, dropping to 12 and a half, then 5, then 2 and a half, then stop. Over a three week period. Pain kicked in hugely mid-way and I completely seized up one night in acute pain, but hung on in there and am now only taking diclofenac.

Best wishes all.... Wallis

I was told 5mg, too. Maybe they just don't know any more than we do! Or perhaps it varies according to age, etc? Have heard of several people on 5mg permanently as their adrenal systems packed up completely and they seem to be OK on that dose.

Nefret

Hello Mrs K,Mrs O,Wallis,and Nephret,

Thank you all so much for your replies.It is so good to have someone that you can ask for advice or information particularly when you have got a Consultant who although very pleasant does not seem very keen on answering questions.I wish I had been aware of this site at the start of this illness .

Finding this thread quite interesting and have started looking into Adrenal glands I had low sodium levels for a while and my Dr was going to send me for further tests as each blood test they were getting worse but they are now back to normal level I now see that Adrenal glands control all this too My Adrenal glands obviously arent kicking in themselves as I am struggling to get under 5mg We all need to go to Medical School !! Thank God for the internet and this site !!

Hi Mrs G - Have you read Ragnar's tested advice for reducing below 5mg? I followed it when reducing from 5 to 4 but I reduced even more slowly taking as long as 5 weeks to finally reach 4. A little discomfort reappeared along the way but resolved itself. I then stayed on the 4 for two and a half months. I'm now going through the same reduction strategy but from 4 to 3 and in my 5th week, hoping to be solely on 3 from tomorrow - once again some discomfort reappeared and I also felt a bit low and tetchy but over the last few days (crossing my fingers as I write!) I have felt good. The last time (around February of this year) that I tried to reduce to 3 by the Rheumatologist's recommended approach of 4 and 3 on alternate days for 2 weeks and then 3, everything went pear-shaped with the pain and the blood tests. As I mentioned in my previous post, I'm just wondering if this long reduction process gives time for the adrenal glands to catch up OR the PMR is burning out, or is the body simply being tricked somehow?! Who knows.....think we're already all at \"medical school\" on this site, learning so much from each others experiences, and probably much more than we ever wanted to! Do hope you manage to successfully get below 5, if only by following Ragnar's regime. Good luck.

Dear Mrs O

I remember Ragnar's reduction programme but cannot find it now and it is relevant as I am trying to reduce below 3.5. Where is it???

Best wishes

Margaret

Hello Margaret

Click on page 2 of the PMR site and scroll down to \"Increased Pain when reducing steroid dosage\". On page 1 of that thread you will find a posting from RD Swede (Ragnar) dated Thu. Feb 12 2009. He mentioned in one of his postings that even his regime may be not be slow enough for some and I certainly have taken double the time. I'd be interested to know if a similar reduction programme works for you - good luck.

MrsO

Hello Mrs O Yes I am being very careful with my reduction My Doctor is a believer in tinker with it see how your body is reacting to the reductions not you must do this So I am perservering Friday I had to lie down and have a sleep at lunchtime !!! This is most unlike me so it is very strange but I really want to get down to say 1mg which I think I was on for a year when I had this illness before but then I was textbook and was down to 3mg with no trouble at all at this stage of the game but is not happenning this time I do think this site helps so much as it makes you think ie Yes at lower doses you are reducing more percentage wise and I didnt know anything about adrenal glands till last week and I was concerned when my Dr was concerned dabout my sodium levels As soon as anyone mentions things like kidney problems I have a little panic !! I shall keep on following the threads and thanks to everone for all their advice

I am so glad that some - maybe many - pmr-fellows have used my regime with success. I was asked to write \"My story\" on http://www.pmr-gca-northeast.org.uk/ so click on Our stories to find my story including the regime I used

Good luck all of you

Ragnar

Hello Ragnar

Thanks for pointing us in the direction of your very interesting \"story\" and the reminder for all of your successful tapering regime - a very positive goal to aim for and proving that there is light at the end of the tunnel.

MrsO