Reduction below 5mg prednisolone, Polymyalgia Rheumatica and GCA, Patient, how to taper off 5mg prednisone.

reduction below 5mg prednisolone

Posted 31 October 2010 at 17:22

I have just started trying to reduce below 5mg in the last few weeks. I've been doing an extended \"ragnar\" method. i.e. 5, 5, 4.5, 5, 5, 4.5 then decreasing the 5 days and increasing the 4.5 etc.. Spending about 10 days on each. Clear as mud?!

Well, all was going well and I had got down to alternate days of 5 and 4.5 but the last few days I have been getting really bad stomach irritation symptoms (I already had inflammation of oesophagus before the PMR started and am on daily omeprazole for stomach protection). I think the only logical reason can be the 1mg tablets which are not coated – I had avoided these completely until a few weeks ago when I started to reduce below 5mg.

I have now worked out a regime of using only 5mg and 2.5mg tablets, starting with 4 days of 5mg, then 1 day of 2.5mg (for 2 weeks). Then 3 days of 5mg and 1 day of 2.5mg for 2 weeks and so on. Has anyone tried this?? I am feeling a bit nervous about it because its faster than what I had wanted to do but I cannot live with the stomach irritation – painful oesophageal spasms, pain, nausea etc..

Thanks to you all

31 Replies

Hallo Beev and sorry about the painful stomach Not funny at all.

Several years ago I had very unhappy gut and, because my GP hardly knew me, hadn't seen him for ten years, he referred me for endoscopy which showed nothing wrong. I was recommended to eat organic yoghurt and have had it for breakfast with muesli ever since ( about 15 years. )no more stomach irrtation.

When PMR came along I was taking 30 mgs for a time and reduced over 3 years to nil. Then PMR came back after five years. Started on 15 and have now reduced to 7 after nearly 3 years. All that time no gut probs and I have never had the coated tabs. Telling you all this in case you feel like trying yoghurt. Mine is the organic Yeo Valley and I have three tablespoons a day. Full fat. I hope this may help you. BettyE

Thanks for that. I had an endoscopy too – before the onset of the lovely PMR. It showed an inflamed oesophagus but no cause. I sometimes have the organic Yeo valley yogurt – and did today as it happens – but low fat as am doing a Slimming World diet to try to lose the steroid fat!!

Do you take the pred with the yogurt or after it? I take my pred with milk after cereal etc..

I was on Omeprazole because of constant acid reflux symptoms before the PMR though – so my stomach is probably more sensitive than most to start with. I just think it must have been the uncoated tablets that did it as I've been ok for months before.

I will try your yogurt idea every day!

That must be miserable for you having bad stomach symptoms and, like Betty, I also recommend the yoghurt if you are not already having it.

I was unable to tolerate the stomach protection tablets such as Omeprazole so have eaten a daily Yeo Valley Live Natural Yoghurt with my breakfast and before the steroids for the last few years and so far so good.

I also have a daily spoonful of Manuka honey which is also good for the stomach and which has many other health benefits such as boosting the immune system (especially helpful whilst on the higher dose of Prednisolone when the immune system can be depleted by the steroids).

I also start the day with a glass of warm water with a few squirts of lemon juice – good for the stomach as the acid turns to alkaline in the body.

I do hope at least one of the above will help you to perhaps revert back to \"Ragnar\"s method of reduction. It is the one I followed below 5mgs but even slower, taking about 7/8 weeks to get completely from 5 to 4 etc πŸ™„ But hey ho, it worked. πŸ˜€

Very best wishes and do let us know how you get on.

Hi Beev & all,

I had the most sensitive gastric system on the planet before I developed PMR 😳 , but was started on a tablet called Protium with my steroids and can honestly say my stomach has not had any problems at all, even though I am now on 14mgs, so taking 2x5mg coated and 4x1mg non coated daily.

However. the Protium (40mgs day) costs me about 45 euro for a months supply (I have to pay for my meds up to a max of 120 eu per month) so I am not sure whether or not that particular drug is available to everyone in the Uk. they may well prescribe something which is cheaper, but not necessarily as effective. It would certainly be worth talking to your GP and asking if another drug might help to prevent the problems you are experiencing as it seems that you are having a lot of discomfort.

Good luck & hope things improve for you soon.

Best wishes, Pauline

Hallo again Beev . You asked when I have the yog. My regime is a bit unorthodox. My GP said to try taking the Pred at night. (9.00PM ) to see if it would help with some of the unwanted side effects and it did for no reason that anyone can understand. That means I have two lots of yog. one at breakfast and then another couple of dessertspoons with the Pred.

Like Mrs. O I have manuka honey and I take that with both lots of yog. They taste lovely together!

One side effect I don't get is weight gain ( well, just a couple of kilos ) so I am lucky not to have to watch my diet from that point of view.

Hope something works for you. BettyE

Hi again everyone

Does the yogurt have to be full-fat? I'm trying to lose weight!

Also, I've been having some jaw discomfort in the last few weeks since trying to reduce below 5mg..mentioned it to doc and he said I couldn't get GCA while on steroids.

I've been doing 4 days of 5mg then 1 of 2.5 for the last week or so, which he said was ok, but the 2 days after the 2.5mg, I had a constant headache and stiff neck so am wondering if that's because the 2.5mg was too big a drop even for 1 day. Can't seem to take the 1mg uncoated ones, so not sure what to do.

It's possible, I suppose that I'm not ready to go below 5mg yet. I started taking pred in Jan this year.

Sorry to say your GP is incorrect, you can develop GCA when you have PMR and vice versa.

read the BSR Guidelines issued June 2009 to be found on the NHS website, The British Society of Rheumatologists website or www.pmr-gca-northeast.org.uk There are a list of symptoms for GCA contained in those guidelines. You cannot afford to take a chance if two or more are present.

Sorry I have no more time at present to explain more.

Its not your GPs fault, they were not issued with the guidelines and as GCA is uncommon it can be misdiagnosed or missed.

Beev – just to expand what MrsK said;

It's not just that you can get GCA when you have PMR as the primary complaint, it's that the dose of steroids to deal with GCA needs to be much higher than the dose to deal with PMR so, since you at the dizzy depths of 5mg the GP is a bit misinformed! GCA steriod doses are anything from 40 to 60 mg so to say that 5mg would prevent GCA is a bit optimisitc.

And full fat milk and yoghurt is still only 4% fat – hardly a high fat food! It truly isn't the fat that makes you fat – it's combining it with highly refined carbs (the ones that are white in colour) and especially sugar that does the damage – as in cake and bread buns and so on. But, by the way, don't take TOO much yoghurt with your steroids as it has calcium in it and will affect the way you absorb the steroid. You need some fat to absorb the calcium to act as a carrier so don't reduce your fat in the diet too far. Too little fat doesn't do nerves any favours and you can get bad tempered! Probably the main reason people on a diet are stroppy!

Hi Beev. I'm down to 5mgs from 15mgs in September 2009. I'm the one on the slowest of slow reductions :zzz: but its working for me (so far!) and wondered if it might help you. This is how I will hopefully get to 4mgs. Wk 1 – 5/5/5/4/5/5/5 Wk 2 – 5/4/5/5/4/5/5 Wk 3 – 5/4/5/5/4/5/4 Wk 4 – 5/4/5/4/5/4/5 and so on until you reach Wk 7 – 4/4/4/4/4/4/4. Its a bit of a palavar but I just fill a 7 day tablet holder and then don't have to think about it again for a week. All being well, you start all over again following the same pattern for the next 1mg reduction. I know its really, really slow, but there aren't any big daily reductions and my body hasn't yet picked up on what I'm doing (I hope to keep it a secret until I'm down to 2mgs at least). I can't manage the 1mg uncoated tablets without getting gut ache but I take Omeprazole without any side effects. I know quite a lot of people on this site can't take them and seem to cope very well with yogurt. Sadly that didn't work for me but I would try the yogurt route first if I was you, it would be good if you could do without yet another tablet! I haven't got stuck at a level yet but I think if I did I would just leave a lmg reduction out for a week or two see how it went. Hope the aches and pains go soon (weather doesn't help does it!).

Hi Beev and everyone,

I too have been trying to get below 5mg, and my GP has not let me have any 1mg. Tried with just 2.5mg every 7 days, but didnt work ,so am now on 5mg all the time, I decided it was maybe too soon to cut down, especially with xmas on the horizon . Will try in Jan. again, Have been on the pred. since Oct.09, but am also gaining more energy and so doing a bit more than I used to, and think that may also be a factor.

Hallo RBLO I wonder if there is a good reason for refusing you the 1mg tabs?

I cannot remember whether you are having the coated sort. If just the bog standard, like me, you can cut them easily with a Boots pill cutter. In the wonderful days when I was almost off Pred. and told to go very slowly, I was even cutting them in quarters.

I think you are due an explanation for the refusal. Good luck BettyE

I haven't been on here in ages due to being busy at work and then Xmas etc..

Many thanks for all your comments and suggestions.

I am doing a gradually reducing regime along the Ragnar principles but avoiding the 1mg uncoated tablets. So far so good and am on 5/2.5 alternate days.

You might all be interested to know that I was referred to see a consultant (general surgery not rheum) – about my jaw problems – my GP was concerned about the possibility of a rare side-effect of the Alendronic Acid (osteo-necrosis of the jaw).

Well, the specialist said my xray showed nothing and was going to give me a scan but, as it had been quite a lot better, decided not to. However, they had told me to stop the AA tablets several weeks ago and the specialist said I should NEVER take anything in the bisphosphonate family again as it was probably due to that and it can be very nasty. He told me to take extra Vit D3 (1000 units) on top of the Adcal tablets which have some D3 in them.

I also spoke to him about the acid reflux and he agreed that I should avoid the 1mg uncoated tablets and that I should get off the Pred as soon as possible.

I have seen that there has been a lot of discussion on here about Alendronic Acid – so beware – if you get an aching jaw etc..

All the best and Happy New Year

Re Alendronic acid. I have posted on the subject before but your experience, Beev, prompts me to repeat myself.

I did not have jaw pain but did, after about 6 doses ( 1 a week ) wake up wheezing. Unheard of, never ever had even a slight cough before. Was given Penicillin in case it was an infection and a few days later had the most violent reaction, covered in a rash that looked like chicken pox but wasn't Sent to hospital and treated with some concern. All was well, though. Told to increase Pred. for a week and eventually the reaction subsided.

What I find interesting is that my file is marked no penicillin, no bisphosphonates. It might have been either/or or a combination that caused the reaction but was told to never take either. I made myself a red card which I carry with my mobile and my blue steroid card.

I know three people who take Alendronic acid, none of them PMR or GCA sufferers, and they don't seem to be having any trouble and I know others on here get on ok with it so I guess you and I, Beev are special cases.

Good luck with the reduction and the acid reflux. BettyE

not posted for ages, nothing of interest to say really. Would like to pick a few brains from you kind ladies on reduction from 5mg. Been to GP this morning with chest infection, and whilst I was there I quizzed him a bit about reduction from 5mg. When I last saw my rheumatologist, he said he'd see me again before I got down to 5mg, but in fact that won't happen as my appointment has been put back a couple of months. My GP said I should hold 5mg for 12/18 months!! Well I nearly fell off the chair!! I was hoping to be off steroids altogether, before 12/18 months from now!! He said it's up to me of course but he wouldn't even consider reducing further until I'd been on 5mg for 3/6 months,There's a lot of difference between 12/18 months and 3/6 months, why can't they be a bit more precise, or is it me expecting too much of the poor souls? I'm on 6mg at the moment, having come down from 15mg since 12th October 2010.

I wonder why 5mg is such a sticking point, and would love to hear other peoples experiences of reducing below that.

My rheumy wanted me to stay on 5mgs for about 7 months after experiencing a flare, increasing to 10 and tapering over several weeks back to 5mgs. I baulked and we compromised at 4-5 months.

Firstly, it would be wise to not even contemplate reducing further whilst you have a chest infection. Such infections can so upset the balance of reductions if you are unlucky.

Secondly, the usual recommendation once at 5mgs is to stay on each subsequent dose for 3 months as the percentage drop at these low doses is so much higher than on the higher doses and the body needs more time to adapt to the reduced dose.

Interestingly, when I attended the Members' Day of the National organisation, PMRGCAUK, in London recently, a rheumatology professor gave a presentation covering his latest research. This involves taking a time-release steroid starting dose of 10mg at 10 pm at night. He believes that this resolves the early morning stiffness. However, that starting dose will be taken for about a year whilst the inflammation continues to subside – it is believed that this lower starting dose taken in this way will have fewer side effects over the longer term.

I must admit that your GP does seem to be hedging his bets a bit! 3/6 months or 12/18 months – how very confusing.

So, it's really a case of listening to your body and how you feel – if you haven't had a recent flare then if it was me, once the infection was well and truly over, I would commence the reduction to 5mgs and then stay on that dose for 3 months and then if all is well, continue to the next dose but go really slowly with the tapering – I did it in half mg reductions.

Hope that helps. All the best and do keep in touch.

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.

πŸ˜† Thanks again,

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. πŸ˜†

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 πŸ™„ and there even being some possible signs of gca appearing there πŸ˜₯

I can't remember how old you are (if, indeed, we ever knew πŸ˜† ) 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 πŸ˜• πŸ™„ 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

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 πŸ˜† πŸ˜†

How is the knee these days by the way?

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 πŸ˜† ) 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 πŸ˜‰ ). 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 πŸ˜†

Thanks again Eileen, all info is much appreciated.

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