Steriods

[ludo]

Hi all, I had GPA for 11 years now and have been on Mycophenolate and 5mg of Prednisolone for some years now. At clinic yesterday they want to stop my Prednisolone . I am to have a blood test to see if my body is producing its own. If so it will just be stopped without reducing it. If not then they will put me on hydrocortisone which they say has less side effects. Has anyone had this happen to them? Reading the side effects of hydrocortisone they seem very similar.

[PMRpro]

I have always been under the impression that they shouldn't really just stop the pred overnight even if the synacthen stimulation test shows your body is capable of producing its own - you are still supposed to stop using a taper even then to let the whole feedback system settle down gently rather than just face it with a fait accompli.

Hydrocortisone has a shorter action in the body so it is said to be easier to get the adrenals to work again and endocrinologists recommend changing any patient from pred to hydrocortisone when they are to stop - rheumies tend not to bother though. Sometimes they give you 2 or 3 lower doses of hydrocortisone as that is more like what your body does to produce cortisol, the natural corticosteroid, in several small bursts over the day. That is the main reason they use pred - you can manage with 1 dose a day because its effect lasts for 12-36 hours, hydrocortisone is much shorter and so you may need more doses which is less convenient.

Good luck.

[ludo in reply to PMRpro]

Many thanks for your rely PMRpro. I was shocked when they said I could just stop Prednisolone if my blood test showed I was producing my own cortisol. I was waiting to see the results and research it before agreeing to do that. I went down to 3mg a few years ago and developed polymyalgia rhematica type symptoms which required a high dose of Steriods to control. So I'm pretty nervous about stopping them.

Your explanation on hydrocortisone has certainly helped me to understand it more clearly. Thank you.

[PMRpro in reply to ludo]

I suppose it depends what test they are doing but if it is an ACTH stimulation test done while still taking pred all it shows is that the adrenals are CAPABLE of producing cortisol - it says nothing about the feedback system governing that production and when you have been on pred for any length of time that entire system has to start functioning properly again. It's very complex, not just one thing telling another to do something. Even once you have stopped taking pred successfully it is felt to take at least a year before that settles down - the reason you are supposed to to carry the steroid card with you even after stopping pred in case of illness or accident where you may not respond with production of cortisol when required. For the sake of taking a couple of months to reduce from 5mg, which is a low dose anyway, to zero - why risk it?

Anyway, if you developed PMR type symptoms at 3mg and needed more to control them - it may well be that the 5mg has been keeping PMR under control too. None of us with PMR would dare to drop from 5mg to zero however healthy our adrenal cortisol production appeared to be! It puts you at risk of having a repeat of that event - and every time can get harder to control.

And if there is a possibility you DID have PMR a few years ago - if anyone tries to tell you it goes away in a couple of years, they're lying! That happens in maybe 25% of patients. Half of us need from 4 to 6 years to get off pred and a the rest need longer. I've been on pred for 6 years so am VERY familiar with all it does - but I've had PMR for just 12 years now. It is still there - I have been at 4mg for most of the last year or so and really did think it might have gone. I've just admitted to myself and the GP - those little niggles I'd thought were me now being in my 60s are really yet another flare. Probably in response to an infection - it doesn't take a lot when you have a dodgy immune system! So yesterday's dose was 15mg - and boy, do I feel better! I won't be staying here long, that was the GP's suggestion, I wanted to start with 10mg but decided a couple of days of 15 would get the job done quicker.

[ludo in reply to PMRpro]

Yes it's funny how we try to convince ourselves it's down to age as we get older. Glad you sort help. The pain I got from the PMR symptoms was dreadful every movement was unbearable. I couldn't rest because I lying down made it worse. I certainly don't want a repeat of that.

[Suzym2u Moderator Vasculitis UK]

This is an excellent website for information about steroids. cortisone-info.com/Disconti...

Reducing prednisolone from 10 mg to zero should be done extremely slowly. if you need to talk about this you can contact John. [e-mail] it took John almost 2 years to get from 10mg to zero, coming down so very slowly from 7.5mg.

[ludo]

Hi Suzy, many thanks for the website information. Although I am only on 5mg Prednisolone I still think they should reduce the dose slowly rather than just stop it. I'm seen at the Queen Elizabeth ans saw the nurse specialist this time. She suggested that new research suggests using hydrocortisone to tapper off prevents those who are not producing their own from possible relapse.

I'm waiting on the blood test results before I question it further hence my message for any information. So many thanks and I will e mail John if they attempt to just stop it.

Best wishes

[PMRpro in reply to ludo]

New research my foot! It may be new English language research! It's something that has been around for a long time - even I know about it and I'm not an endocrinologist. Unfortunately it is very common to find things that weren't published in UK/USA journals being ignored.

I should have said in the other post - even if your body CAN produce cortisol perfectly well, reducing from 5mg to zero overnight can leave you feeling really rather rough for some weeks or even longer because stopping pred too quickly can result in something called steroid withdrawal rheumatism. It's like going cold turkey on any drug that your body becomes used to being there over a long period. Top experts like to see reductions of not more than 10% of the current dose - not easy below 5mg anyway.

Over on the PMR forums we recommend trying this:

healthunlocked.com/pmrgcauk...

If you have PMR it helps identify the right dose more accurately but it also avoids the steroid withdrawal problem at any dose. It is approved of by several rheumatologists, is used in a couple of departments already and is part of a study on PMR and steroid use in the north of England. I'm also told by someone in the US that her rheumy has something very similar on his own website - I didn't steal from him though!

You could, at a pinch, try it with a 5mg drop if you did it slowly enough - but 1mg tablets make it far simpler and comfortable.

[ludo in reply to PMRpro]

Many thanks again PMRpro. Your information has been very helpful. I can go armed with aminition now if I'm asked to just stop Pred. Do you think it would be better to gradually reduce Prednisolone if I'm not making my own cortisol or go over to hydrocortisone? From your previous information it seemed to suggest it was a weaker substitute which would mean taking more tablets in a day so hardly worthwhile. Your thoughts on this would be appreciated.

[PMRpro in reply to ludo]

There are other advantages to the hydrocortisone - some doctors use pred, some use hydrocortisone because sometimes it does make the adrenal wake up again eventually. They are the people to discuss that with - though if I were you I would ask to see an endocrinologist who really will know about this.

It all depends on what the test shows - if it shows your adrenal glands CAN'T make cortisol then you will need to stay on a low dose of pred or hydrocortisone probably for life. At least one lady on the PMRGCA forum will remain on 5mg pred for life because her adrenasl no longer are able to produce cortisol - it doesn't bother her at all.

Hydrocortisone isn't weaker as such - it is just that its effect doesn't last as long for each dose. But that also means it isn't having as much effect on your body to create side effects.

[Doghouse]

Thankfully I am finally off prednisolone but it took a long time and it was by gradual reduction. On my first attempt I had a relapse so had to increase again for a short while . I have reduced them several different ways but always very slowly even though my body produced its own .

Good luck, hope it goes well

Doghouse.

[ludo]

Thanks Doghouse. What dose were you on when they started to reduce it down? My understanding was that it should be reduced slowly so you can imagine my shock when I was told it would be just stopped if I was producing my own.

All this information is very useful. Thank you

Best wishes

[KirstyW1999]

Hi I take the same meds as you .

I was reducing my prednisolone from 10mg to 7.5, but had extremely low blood sugar . I was given the synacthen test and was adrenal insufficient. My prednisolone was increased to 10mg in August last year.

Since November my prednisolone has been slowly red to 5mg .

The endocrinologist can only see me on the lowered dose in order to actually see what my adrenals are producing, as 10 mg masks this.

Hope this helps.

[ludo in reply to KirstyW1999]

Thanks Kirsty, everything does seem to be pointing to reducing pred slowly. I take it your endocrinologist didn't recommend changing to Hydrocortisone. I hadn't heard of anyone you has had this as an alternative. I really must discuss this throughly with them and ask where the research has come from.

Hope your successful in coming of yours eventually.

Best wishes

[DevonLottie]

I'm reducing mine at the moment and once I got to 5mg I was advised to reduce by 1mg a month.

[ludo]

Thanks for replying DevonLottie. All my replies so far have said they had their Pred reduced slowly. It's a bit disconcerting they would want to just stop it if I'm producing my own. I think I shall have to fight my corner.

Good luck hope you managed to get off them without any hiccups.

Best wishes

[KirstyW1999]

Hi Ludo,

I am seeing an endocrinologist end of February, as he won't see me until I have been taking 5 mg for at least 3 weeks. I won't know until I see him if my adrenals are finally kicking in.

It's has been a long waiting game and quite unpleasant reducing prednisolone whilst being adrenal insufficient.

Hope you get all the right help you need

Good luck

[ludo]

Many thanks. Good luck to you too.

[SandieB]

Hi iam on Prednisolone and have been for many years mine was stopped and i had a massive flare up of WG i then was put back on them and got down to 2.5mg but had to go back upto 5mg which i will be staying on, they had thought of putting me on Hydrocortisone but then changed their minds. Be careful Ludo x

[ludo]

Thanks SandieB I will be careful. People's responses through this site has been very helpful. We are lucky to have it.

I wonder why they didn't try you on Hydrocortisone.

Sounds like your stable on 5mg of Prednisolone so why rock the boat so to speak.

Good luck and thanks for replying.

[PMRpro in reply to ludo]

If it is to manage the WG then pred is better - one dose a day. If it is because the adrenals don't work properly then hydrocortisone is better because it resembles the way cortisol, the natural corticosteroid, is produced.

[ludo in reply to PMRpro]

thank you so much.