reduction below 5mg prednisolone

Mrs O,

thanks for your reply. Yes I think I might have a try after 3 months on 5mg, taking it very very slowly, which is what I'm doing now. I did 7-6 very slowly trying the new dose once weekly then twice weekly and so on.

Slow but sure (hopefully) is my motto, it was just the holding 5mg for such a long time that shocked me.

:lol:Thanks again,

Molly.

Patient Exp just threw me out and I nearly lost this when I tried to submit it - must have been you two on at the same time! Luckily I'd copied it. I see MrsO has beaten me to it!!! :lol:

Hi mollycoo - good to hear from you again, especially since your reduction so far has obviously gone really well.

This has been talked about a fair bit recently on all the forums. I hope MrsO doesn't mind me taking her name in vain - but she was encouraged to stay on 5mg for at least 7 months by her doctor and they eventually agreed on 5 months. She then proceeded using a \"modified Ragnar\" method (i.e. even slower) and has been really successful in getting right down with no hiccups but that is over a total of 4 years or so. There is plenty of evidence to suggest trying to get off steroids in less than 2 years is not a longterm success, leading to more flares and relapses later after stopping pred than if you go much slower. You are well under a year at present so maybe he's smoothing things out to taper oh so slowly over a good 2 years - does that make sense?

Did your GP make any comment about after 5mg? I wonder if he's had bad experiences with the size of drop they seem to expect patients to be able to cope with - several people have found it possible with 1mg or, even better, 1/2mg drops at a time but anything greater has caused problems. When MrsO mentioned her doctor's wishes it did occur to me that possibly staying at 5mg for a really long time allows the adrenals to recover even while you are still taking pred - below 7.5mg you are taking less than the body normally makes for itself so it needs to start making some of its own. In that context it makes sense that getting below 5mg could be difficult - so giving the body all the encouragement and help you can would make a difference.

Apart from anything else, at 5mg the incidence/long term effect of any of the side-effects is minimal so if you are doing well at it, the very slow taper he's suggesting will do you no harm and may prevent any blips. A Swedish doctor with a lot of experience (they manage to dx more than anywhere else) told me a couple of weeks ago they have patients on 5mg for a very long time, some for many years. Remember too, the steroids haven't cured the pmr and so far you haven't got down to the dose that matches the amount of inflammation in your disease. Who knows, that may be 5mg, but even so, there seems to be a thought in some circles that leaving the patient on a dose at that level at which they are doing well will allow the disease process to die away before risking dropping the dose to a level where it might have flared up again. I think it IS expecting too much of the poor souls to ask them to be more precise - after all the human body is a bit variable at the best of times and pmr seems to have a mind of its own anyway - and the 6 months minimum on 5mg seems a good idea to me. I certainly would accept it happily having got stuck at 17.5mg/2 days :roll: and there even being some possible signs of gca appearing there :cry:

I can't remember how old you are (if, indeed, we ever knew :lol: ) but someone on the other forum said a few days ago that, at the age of 67, if she got to 5mg she'd stay on it as long as the doctor liked if it meant she had a life. I'm in that camp too. If you are going to have the worst side-effects it is at high doses and the very longterm effects of a low dose usually involve osteoporosis. If pmr comes back you have a choice of a life now and maybe having a broken bone later - or no life and still falling and breaking something later. Once your physical activity is curtailed you become much more at risk of falls anyway and inactivity also leads to osteoporosis. You're damned if you do, you're damned if you don't :? :roll: At least you have a doc who is happy that you are managing on a low dose and not trying to get you to drop faster and risk a recurrence! Or changing their mind about the dx afte

Thanks Eileen,

I too am 67. My GP did say that anything under 7.5mg is considered a fairly safe dose, so perhaps I should be content to stay at 5mg for some time, now I hear other people are doing the same thing, I certainly don't want a flare!! He didn't go on too much about the AA which I won't take, in spite of the recent wrist fracture, actually he said a colles fracture is not considered a fragility break, music to my ears. I had a Dexa scan in January which was normal, take Calceos and have a ridiculously high calcium diet!! He was happy with that, but said if I ever changed my mind about taking the AA, he wouldn't try and stop me :lol: :lol:

How is the knee these days by the way?

Cheers,

Molly

My knee is pretty much back to normal, thank you - it recovered its stability very quickly so the ligaments obviously healed well. So much for not healing well when on pred!! Haven't tried skiing on it yet (obviously :lol: ) but that wil be the real test!

One of the things they usually do if you are over about 55 and fall and break something is a dexa scan to check for a bone-fragility break. If you dexa was normal in the early part of the year it is very unlikely you'll have any probs - you'd already been on steroids at the higher doses for pmr before it and a rheumy in Durham told me (while refusing me a follow-up scan) that the majority of the loss is in the first 3 months of treatment. If your dexa was normal there is no indication at the moment to take AA (whatever your doc says :wink: ). The guidelines for pmr say that the calcium and vit D is the first prophylactic measure and should be automatic but the next step is a scan - and only then should AA etc be offered if there is any indication of osteopenia/porosis. You shouldn't be on the stuff for more than 5 years at a time anyway the FDA has now decided - and they aren't sure about what happens with longer exposure yet. If I need it later that's something else but as a preventative that I might not need - NO! Not everyone develops osteoporosis anyway. I wonder if it has occurred to them that many of us were on the pill, had HRT, have been and still are much more active than our mother's generation. It has been the case that it is ASSUMED that you have osteoporosis if you are over a certain age (mid 60s I think) which I think is appalling.

I read such an interesting post by a Swedish doctor in the USA where he wrote a letter to his patients about all the drugs he had prescribed for them in the past that were supposed to be so good - and then had been shown, in fact, to have put their lives at risk. He says he has learnt much from the internet-armed patient like us - including humility and that he doesn't know it all. If only there were more like him :lol:

cheers, Eileen

Thanks again Eileen, all info is much appreciated.

Cheers,

Molly.

[quote:165d61a421][color=green:165d61a421]It has been the case that it is ASSUMED that you have osteoporosis if you are over a certain age (mid 60s I think) which I think is appalling. [/color:165d61a421][/quote:165d61a421]

Yes but it saves having to think and, dare I say, spend.

Why, if we are living longer does everything have to be done in the shortest possible time, I wonder?

Hooray for your Swedish doctor and for the internet generation of informed patients. Somewhere along the line more pofessionals will learn humility.

Re healing: I, like you, have not seen any difference in the time I take to heal, mostly gardening gashes but also two bad muscle strains or even tears. They healed in a couple of weeks which I thought was ok as Jimmy Anderson ( fast bowler ) allowed himself three weeks!

mollycoo

My Rheumatologist advised once on 5mg, then 1mg drop every three months.

Main reason is that the adrenal gland has gone to sleep and needs to be woken up. This can take up to a year. And you must still always carry your blue steroid card with the date of the last dose.

If you visit www.pmr-gca-northeast.org.uk, there is an article on Steroids (written by a patient for patients - but checked out medically - in other words no jargon).

However, some patients take the drop's earlier depending on how they feel and at no more than 0.5mg at a time. I found reducing from 4mg to 3mg - horrible as I forgot to do the math. So now on 3mg - 2mg alternate days sort of, 3mg then two days at 2mg, then 3mg and three days at 2mg. Fingers crossed.

But remember I have GCA and do not have PMR, so you must consider your pain levels. PMR goes away when it wants to so take it easy, the last thing you want is a 'flare'.

Good Luck.

Mrs K,

thanks for that. I realise the reduction from 5 will have to be very very slow, I'm going slowly at the moment. I got from 7 to 6 by trying 6 once weekly then twice weekly and so on, it was just the long hold at 5 I couldn't understand the reason for, but I do now it's been explained. No I certainly do not want a flare, as things so far have gone very well reduction- wise. I'm not pain free, but don't expect to be. Of course both my GP and rheumatologist are not fully convinced that this is PMR I have, as I don't run true to form symptom wise. Apparently I didn't react quickly enough to the pred in the beginning, I have hardly any shoulder/ neck/ arm pain and am \"too young\" at 67. I'm still laughing at that one :lol: :lol:

Thank you again for the information. What would I do if I couldn't come on here for advice. I've learnt far more from you ladies than from any of the medics!! I think others have said that too.

Good luck with your reduction.

Cheers,

Molly.

Hi all!

I am honored that some of you mentioned that you have used my method and in some cases án extended Ragnar method. Much of the method is about getting below 5 mg, and as some of you may not have visited the very interesting website for pmr gca in the northeast (google pmr gca northeast and you will find it), I want to point out that if you read the stories, you will get much goodadvice. From my own story,

I quote: \" I reduced the Pred by 2.5 mg every 3-4 weeks until I reached 10 mg. Then I reduced by 1 mg every month until I reached 5 mg. I tried to reduce below 5 mg during a whole year, but every time I had to go back to 5 mg due to fatigue. I thought it was no idea to go around being tired all the time when I didn´t have to. Unlike most persons with pmr, I had fairly little pain. When I had slight pain, it could be anywhere in legs or arms. After a year, I thought I would test a new regime. I took the lower dose 1 day, the old dose 2 days and repeated this once more. After about a week I took the step and lowered the dose each day. By doing this, my body reacted positively and I could start going down below 5 mg but only about 0.5 mg at a time. I had 2.5 mg tablets and cut them by hand in four parts, so it really was 0.6 mg at a time. If there was a problem, I just continued 1 day low dose, 2 days old dose for another week or so.

After 3 ½ years – in the middle of December 2008 – I got down to 0 and I haven´t had any problems after that.\"

As you see, it took me a year to get below 5 mg and it was not until I tried my method that I succeeded. I think it is very important to know that it may take some time to get below 5 mg so you don´t get discouraged if it takes long.

Good luck to you all - it is possible to get to 0!

Ragnar

Hi all!

Well, I've just returned from seeing a rheumatologist here in northern Italy who has some 30 PMR patients on his books - which given the size of our local hospital and its catchment area is quite an impressive number.

I will just throw in here a few of his statements this morning:

Once the inflammation is under control the reduction must be very slow - not more than 2.5mg above 10mg/day and only that much if there are absolutely no problems. Below that, never more than 1mg at a time and often only 1/2mg at a time. He often hands that over to the GPs.

There is no need for anything other than calcium and vit D supplementation unless there are proven signs of osteoporosis on a dexa.

None of the DMARDs have shown any role in PMR or GCA, even in being able to reduce the steroid dose even slightly and methotrexate is as bad for side-effects as steroids (he sees many rheumatoid arthritis patients with the MTX hangover that takes away a day or more of their week).

He was horrified at the doctors who rush to get patients off steroids (admitting there are some here too) and said quite clearly (what several of us have said) that the bulk of patients come in the middle of the statistical curve - there will always be the atypical patient tucked in the little corners at the top and bottom ends of the curve.

So Ragnar - you are vindicated in your slow slow method and, as you know, I've been preaching it too! Now, how do we spread the word to the rest of the medical community!

Eileen

Eileen,

just love your rheumatologist. \"there's no need for anything other than calcium and vit D supplementation unless there are proven signs of osteoporosis on a dexa\" Sounds like a man after my own heart, and I may just have to come and live in Northern Italy !! :lol: :lol:

Cheers,

Molly.

Molly - he does speak English! And they have a Canadian physio there too - unless he's French-speaking, but I don't think so! He seems quite sensible (the rheumy that is) and amenable to discussion!

Moderators: if you read this - I've been logged in a couple of times to reply to a post and appear to have been \"logged out\" by the site. Both times it happened when someone else was also submitting a post. Surely two of us at a time shouldn't crash it? Luckily I'd copied it before I tried :lol:

Eileen

Hi Eileen,

No, two people being in should not crash the site/forum. We did move the website to a different server yesterday but that should have been a seamless transition which shouldn't have affected anything.

The only thing I can think of is if you are writing a long post the session may \"time out\" - even if you are typing a message the site thinks you are inactive.

I have had this when composing emails and it is frustrating. Your method of copying before submitting is the safest way not to lose the post or write it in a word document or similar first and then paste into the reply box (though you would need to add any smileys after pasting :D ).

The site will be getting a revamp in the near future and I'll suggest this as a \"handy hint\" for the helpfile or equivalent.

I'll check with the developer to see what the time out period is and ask her to raise it if need be.

Hope this helps.

EMIS Moderator

Moderator - Thanks - yes, I'd noticed a difference. As you probably know I do often write a long post (never really intend to but it takes longer than you think :lol: :roll: ) but this seemed a lot less time than hasn't been a problem other times plus it did coincide with others posting at the identical time.

Eileen

I have been given deltacortril Two point  five mg along with  the  five mugs are they the same as  the  five