ALTERNATE THERAPY

Hello Mrs K,

Thank you so much for this very useful information.

Having started on 20mg and come down to 15mg, I have been toying with the idea of taking 15mg one day and 10mg the next.

However, reading your post, perhaps I should wait until I see a consultant (for the first time) in three weeks?

I will certainly try the alternate day dose when I get to 5mg.

There is no doubt that Prednisolone has transformed my life and I am most grateful for the amazing relief it has provided. However, I want to reduce the dose as much and as soon as possible whilst maintaining the quality of life I now have. This forum is brilliant at providing advice and information and I am so pleased to have found it.

Hi Tills!

I am the person who asked MrsK about ADT having read about it for other chronic diseases where steroids are the only solution. After her reply, I have started trying it at a dose of 7mg/day which I've been on for a few weeks by swapping to 14mg every second day and so far its looking good so I'm changing to 13mg per 2 days to see how I react.

However, if you've come down from 20 to 15 mgs a day in one go you should maybe read some of the earlier posts about tapering, some of them from MrsK. I started at 15mg/day and that relieved all my symptoms so 20 seems quite high to me (though I know that many others will have needed 20 to start with). As the daily dose reduces the reduction you can make becomes more of a percentage of the dose you were on - all depends on the selection of tablets you can persuade your GP to prescribe for you! Lots of people find that they can only make a very small change without the niggles starting up and some people have been using really complex rotas to reduce by very small amounts (MrsK has done a couple of posts, scroll down to find them, or I'm sure she'll be on soon and point you in the right direction).

If you have the range of tabs I have (5, 2.5 and 1) by going onto ADT once you get down to 10mg you can reduce by half a mg each time which is what I'm aiming to do on a steady basis. Before that I never reduced by more than 2.5mg per day each time I stepped down and even then I was taking a couple of weeks of one day in three new dose then every other day new dose before getting to every day new dose (does that make sense to you?). And if I had any niggles I slowed the progression down a bit (this was recommended by my GP) and also did so when the weather got cold! Lots of people seem to have found the reductions work best if you take a couple of months at each dose before taking the next step down. I got down from 15mg per day in mid-August to 5mg in November - but then it got cold and I stiffened up (we're talking -8C to -12C daytime temps here, I live in the mountains in northern Italy) so went back to 7.5mg. I'm amazingly sensitive to changes in the weather so take a bit extra then for a few days.

The impression I have had from others on the forum is that if you try to cut back too quickly you just end up having to go back up and take it even slower the next time. Certainly the first course of steroids I had - the one with the miraculous return of my life - I went down 15/10/5 over 6 weeks, i.e. 2 weeks at each dose as instructed by the consultant. He refused to accept the evidence of the 24-hour response to steriods as suggesting PMR and wanted me to change to another (even nastier) drug as he was convinced it was some rather horrible form of inflammatory arthritis - it was 2 lady GPs (one British, one here) who were quite satisfied about the diagnosis of PMR and were happy to go on as we were. I had to take it much more slowly the second time, being on 15mgs for quite a bit longer and really ending up getting stuck at 7.5mg for a while. I hasten to add that I realise others have had to go much more slowly than I have.

However - I will continue to post here at intervals on how I do on ADT for the benefit of anyone else who may be interested as the scientic/medical evidence is that it is a lot better for us with regard to adrenal suppression,

cheers everybody!

Eileen

Hi Eileen,

Thank you for your very helpful post.

I have to admit I was better on 20mg of steroids than I am on 15mg but I am trying to be phlegmatic about the whole issue of PMR and take it step by step.

I only have 5mg tabs so when I see the consultant in three weeks, I will ask for a selection of strengths so I can experiment.

It seems to me a personal balance between quality of life and the ability to live it!

Living it in the mountains in Italy sounds pretty good!

Good luck to all,

Tilly

Hi Tills!

Definitely have to agree about the balance bit!

How long were you on 20mg and how long have you been on 15mg? It does seem, from what others who have been involved with this forum much longer than I have, that sometimes it takes a few weeks to adjust to the drop and certainly, where there are niggles, a period of using the old and new doses alternately may help to smooth out the transfer.

I spent most of today surfing the web (the weather has been disgusting at altitude with high winds of 40mph plus and no sun coupled with temps of -16C!) and found several interesting publications. One had the following instructions for switching to alternate day therapy from a single daily dose therapy:

\"When switching to ADT begin by modestly reducing the 2nd day's dose and adding it to the 1st day's dose. This maintains the same total dose. If the daily dose is greater than 40mg, reduce the dose on the second day by 10mg and if the dose on the 2nd day is less than 40mg reduce by 5mg. Once a dose of 20 mg is reached the increment should be 2.5mg. The interval between changes in dose is determined empirically, based on the patient's clinical status. Endpoint is when the previous entire 2 day dose is being given every other day.\" (Primary Care Medicine:Office evaluation and management of the adult patient. Govvall and Murray, 2009)

This suggests to me that, even without an attempt at this level to change to ADT, you might in fact have been better with a 2.5mg per day reduction when you started to cut down, sticking to 17.5mg every day until you were sure you were stable with no niggles before trying to go down again. Others on this forum (and my GP) also suggested a week or so of, for example, 20/17.5/20/17.5 and so on before going to 17.5 every day is also helpful in the adjustment.

Once you have started on steroid treatment at this level, there is almost certain to be some adrenal suppression so a very gradual reduction is needed for two reasons: for one thing to stop the flares of the PMR and for another to prevent the body suffering a reaction from the steroid withdrawal being too fast. Since some of the symptoms are the same it is difficult for anyone to know exactly which reason it is that is giving you the weakness/fatigue/sore muscles etc!

Another comment was that \"after as little as 2-4 weeks of 20-30mg prednisolone daily, patients should be advised to supplement steroid intake when under stress or experiencing an acute illness\". So if you are in the process of reducing and you have a long journey, a particularly stressful experience in the family or at work or a cold (or worse), then you need to consider upping the dose briefly to allow for that.

I have found reducing not too bad so far as long as I take very careful note of what my body is telling me. If I have a couple of bad days, I either take it easy for a day or two or (if that's not an option) add a mg or two to the dose for a couple of days and then go back down to where I was before. It hasn't failed yet!

The concensus seems to be that once you get down to a \"physiological dose\", and that is regarded as the equivalent of about 10mg/day (only half of the dose you take is available to the body which would normally secrete 5 to 7.5 mg of cortisol), although there is still some adrenal suppression, the side-effects are minimal for most people and I guess that is where we should be happy to be and then work on further reduction at a very gentle pace.

good luck with your appointment :-)

Eileen

Hello Eileen, That's all very interesting and good to hear different views. I was asking around last year about putting up the steroids in order to enjoy a holiday and cope with the travel better but nobody seemed to go with that one, more \"don't reduce\". Also i had a flare after Christmas, had to go up to 15mg. which was where I was at just a year ago. The reducing too quickly theory didn't quite make sense to me as I had just taken 11 weeks to come down from 8.5 to 7.5 mg. But looking back now I can see it was a very stressful time, husband had a heart attack whilst away from home, which involved sitting in a car nearly 6 hours a day to go and visit him, then worrying about him because he was so keen to show he was as fit as ever so doing too much. Then a stinking cold, then all the cold weather ( yes we do sound like wimps in this country but we're not used to it!), etc etc. So the idea of stress plus even minor ills makes a lot of sense to me.

Incidentally I am finding I can reduce from the 15 mg much more quickly this time round. Already doing alternate 11mg and 12 mg. after only a couple of months and feeling pretty OK on it. I may well try the alternate

day stuff when I get a bit lower, see what the Dr. says.

Wonder how they're getting on in London with their big day?

Thanks for the info, Green Granny

Morning Eileen and Green Granny,

I am going to print and keep all this useful stuff! I don't have much free time and so am grateful to everyone who produces such useful information.

I was on 20mg for just two weeks which my GP described as an experiment as my blood test results were 5 and 1.5 so not indicative of PMR. The relief was amazing. Since 3 February, I have been on 15mg. Not quite as wonderful as being on 20mg but good enough to continue to work at a high level and to be able to sleep.

I am nervous about cutting down from 15mg but, at the same time, eager to get down as quickly as I can. I am stuck on 15mg now until I see the consultant on 1 April but will definitely discuss reducing the dose in April.

I have put on a stone in weight in two months which I am now trying to lose but the desire to eat for England and the freezing weather are not helping!

I have a friend who has been on steroids for 20 years and says she will never be able to get below 5mg and will have to stay on this level for the rest of her life. I will tell her about the alternate day treatment as it could be the answer for her too.

All the best,

Tilly

Hi Tills,

I started on 15mgs in September just 3 days before going on a cruise (I was on the point of cancelling it when the magic of Prednisolone took me from a zombie to (almost) normal in 6 hours flat!). Whilst on the cruise I had a couple of 'concrete overcoat' mornings and upped the dose to 20mgs (only had 5mg tablets so no choice). When I got back my Consultant was quite shocked that I'd upped the Pred and told me in no uncertain terms to get back to 15mgs and stay there! I was so comfy on 20mgs but decided that she knew more about both PMR and steroids than I did, so took her advice. In January she started to reduce the Pred, albeit very slowly. 15mg to 12.5mg for a month, then down to 11mg for a month and since 1st March I've been on 10mg. I have to say that it has been quite easy so far reducing at this rate and I'm having a very good spell at the moment, 6 whole days feeling good! I'm see the Consultant next Wednesday so will be very interested in my blood results to see if they reflect how I feel at the moment. I'm guessing that she'll want me to continue reducing the Pred at the same steady rate although I realize from my school maths that the drop from 10mg to 9mg will be bigger percentage wise to this months drop, so I'm very interested in the ADT approach and will talk to her about it, see what she thinks. 9mg/10mg on alternate days might work better than a straight drop to 9mg. She said that 1 in 3 of her patients get off of steroids completely in a year to 18 months and I didn't ask her about the other 2! All the advice I've gained both from the medics and from this site is to reduce very slowly as this seems to be more effective, it does seem to working from me at the moment. Sorry to hear about the weight gain, its really distressing I'm sure. I had the opposite effect - when I started on the Pred my appetite vanished for the first time since I was born (!) and I lost weight, now as I reduce the steroids I'm having to watch my diet again :donut: !! Keep well. Regards Lizzie Ellen

Hi Green Granny,

You have had a rough time and I do believe that stress and general winter ills have an effect on PMR. I'm seeing my Consultant next Wednesday and I'm not sure what my next drop will be (on 10mgs at the moment and seems to suit me) but will certainly ask her about ADT. She's very open to any suggestions and is keen to hear what I think my body is saying, but in the end I'll take her advice because she seems to have got it right for me so far. What would we do without this site!! Your comment regarding travel and not reducing rather than upping the dose clicked with me, why hadn't I thought of that :? I'm off to Spain on the 2nd May for a couple of weeks so will ask her if it would be better to wait a few days before reducing (I normally reduce on the 1st of the month as its easier to remember). Take care. Lizzie Ellen

Hello everyone

I will be most interested to hear what your various consultants have to say about alternate day dosing since I've now been discharged and won't have the luxury of a consultant's advice! It will be interesting to hear whether any of them refer to the corresponding adrenal gland fluctuation.

I will reach 3 years this week since starting steroids due to PMR and GCA (4 years with PMR).

It's always really interesting to read how differently we all respond to the illness and the steroids. For instance, although I commenced on the very high dose of 40mgs, this was brought down very quickly to 15mgs, via 30, 20, within one month, each reduction depending on normal ESR and CRP. Then I went from 15 to 12.5 in 2 weeks, followed by 12.5 to 10 in 2 weeks. Then monthly reductions down to 5 with normal readings. This is the dose at which the blips occured for me (as with many other people) on 2 occasions, necessitating an increase back up to 10 and finally many months on 5 before reducing again following Ragnar's regime. Now on 2mgs but toughing out some early morning arm discomfort. Looks as though I'll be on 2 for some considerable time. As we're all discovering, like Granny G, PMR doesn't like any illness or stress or trauma to the body, but it's not possible to live in an ideal world! Meanwhile, keep up that high intake of fresh fruit and veggies and oily fish and, hopefully, we will have warm, sunny days soon and will all see the light at the end of the tunnel!

Do hope the Launch is going well today for all those wonderful people who have travelled so far for our cause. I'm wondering if it will get any TV news coverage, especially as recently publicised sufferer, Dorothy Byrne, is a producer for Channel 4, and she did comment in her article that she would be there today.

Best wishes to you all.

MrsO

Hi Mrs O,

I keep reading about Ragner's regime and each time I mean to check it out, then something else leaps into my (often foggy) brain and then I forget. So, before I forget yet again I wonder if you would be kind enough to remind me where I can read about this regime? You must be delighted to have been discharged and I hope you continue your journey back to good health without any setbacks. I'm keeping a close look out for that light at the end of the tunnel!!

Keep well

Lizzie Ellen

Hi everybody!

I didn't mention it before as I thought I'd already written quite enough and didn't want to give anyone verbal indigestion :-) but there are a few groups doing research on PMR (in the USA, Italy and Germany) who are of the opinion that there is what is called a \"HPA deficit\" involved, not only in PMR but also in chronic fatigue syndrome and fibromyalgia and that it is possible that all 3 syndromes may be different expressions of a similar problem.

Put simply, the \"HPA deficit\" means that there is something not right about the way the hypothalamus, pituitary and adrenal glands are functioning - and these glands are the control centre for the rest of the body and control, amongst other things, the production of cortisol. Some of these scientists/medics consider the steroid treatment for PMR etc to be not so much a blanket means of reducing inflammation but more a \"replacement therapy\" in the same way that insulin is given to diabetics or thyroxine to someone who is hypothyroid.

It occurred to me that if you look at the steroid therapy from that point of view, I think it should take away a bit of the fear so many people seem to have of taking them. It also would account for the difficulty that seems to arise when you get to 5-ish and find it almost impossible to get below it. If your body wasn't producing cortisol properly before (or maybe not responding to what WAS being produced, which it is isn't clear), then you are in a similar position to someone who has been diagnosed with a malfunction of the adrenal glands and who has to be on a maintenance dose of steroids for life.

I'm not saying that we will never get off steroids but since most of the consultants we see are not well informed about PMR they expect us all to respond the way most other patients do to tapering the steroid dose. As I've said before, the consultant I saw refused to accept that all my symptoms disappeared within 48 hours, most within 24 hours and seemed to want it to be some other form of arthritis.

I repeat, too, my ESR and CRP were not just normal but low. The literature says that as many as 20% of patients who are diagnosed with PMR on the basis of clinical history and response to steroids have normal blood values - that is 1 in 5 of us will have been told by someone that \"it can't be PMR, your blood tests are normal\". I was also told I was too young - the literature I have found also suggests that younger sufferers have different presentations. And we often hear of women going to the doctor again and again with vague pains all over, tiredness, depression and being told there's nothing wrong, your blood tests are fine. They become the \"heart sink\" patients, are fobbed off, give up and curl up in a corner. I think that this syndrome of PMR is grossly underdiagnosed.

A lot of people on this forum have mentioned their PMR started soon after an accident or other form of stress. If their cortisol production was dodgy anyway but was adequate to keep them going under normal circumstances, it may have been that the stress tipped them over the edge, so to speak, and the PMR surfaced. I had had symptoms for 4 years and I changed my lifestyle quite dramatically to keep going as long as I did and it was after moving house, driving a couple of thousand miles and having a transient global amnesia all within the space of 6 weeks that I was in so much pain I came almost to a standstill. I know others were far worse than me - many couldn't get out of bed at all. Also, like most other bits of our body, adrenal function also gets poorer as we get older, so it is logical that PMR would appear eventually in far more people.

I wish I still had access to Medline and things to be able to read more of the publications I've found - even more, I'd love to sit down with the chap in Southend or the ones in Bristol who are doing research on PMR and have a brain-storming session with them!!! I'd like

Hi Lizzie Ellen

Go to page 4 of the forum and scroll down to \"Increased Pain when reducing steroid dosage\". On page 1 of that thread you will find Ragnar's regime especially recommended for reducing below 5mgs.

Also to read his story, go to pmr-gca.northeast.org.uk and click on \"Our Stories\" where you will see his experience.

I'm rather rushing this as dinner is ready but let me know if you're not successful.

Thank you for your good wishes, although I would have been happier to have stayed under the consultant whilst trying to get down from 2 to 1 etc. Perhaps he got fed up with me!

You are doing very well so keep it up and you never know you may just be the one who let's us know they have recovered after 12/18 months and reaches the end of that tunnel. Lots of luck.

MrsO

Hello Eileen

You've raised a topic here that has always been on my mind - why is a test not carried out to find out the state of the adrenal glands especially when sufferers who have been on very long-term steroids find it difficult to reduce below 5mgs?

It is well known that the steroids suppress the adrenal glands and thus their supply of cortisol. Therefore, the theory to which you refer of a possible depletion of cortisol prior to illness and diagnosis would surely lead to further depletion by long term steroid use.

I'm sure such a test is available as the granddaughter of a friend was hospitalised a few years ago to investigate her adrenals after long-term steroid therapy due to a bowel problem prior to having a colostomy.

One other query - there is a belief that our adrenal glands take a long time to get back to their normal cortisol production even after stopping steroids. My consultant informed me that the steroids do not shut down our adrenal glands altogether from making cortisol and when we reach 7.5 or 5mgs, then that is the normal daily amount made by our adrenals. I trust his statement, otherwise our bodies would be unable to cope when taking oral steroids below 5mgs if there was no natural cortisol available to make up the shortfall.

I fear that it will be many years, if ever, before a cure is found but the least we can hope for is that an alternative drug with less major side effects will be discovered from the present research being carried out by Professor Dasgupta . Meanwhile, thank goodness for the steroids!!!

MrsO

Hello all There was so much on here today I printed it off so I could read it in comfort !! I too am very interested in the Adrenal glands I didnt know anything about them until my Dr was worried about my salt levels going very low and if it had continued for another blood test she was sending me off to see a specialist but it then improved When I looked it up I found out about adrenal glands cortisol and fighting stress etc I was on 5mg after Xmas when I was very stressed in the bad weather and trying to cope with my horses and thats when I ended up back on 15mg I am now on 12.5 and doing fine ( fingers crossed) feeling a bit more energetic (dangerous not to overdo it !!!!) my drs plan is 1 month there then on 10mg and no idea after that I am very interested in the alternate day theory but dont think I shall mention that until I reach about 7.5 Thanks Eileen for all the information you are giving us I hope Lizzie Ellen you are as I was when I had the first bout of this off steroids in 2 years Never had very high bloods but as soon as I was on steroids very low all the time I only have rough records from then as it was 2002 !! 20 mg for 2 weeks 15mg for a month 10mg for 2 months ( holiday and Xmas ) 7.5 for 2 months 5/6 alternate 1 month 5 mg 1 month 4 mg 2months ( holiday )3mg 1mth 2.5 1mth 2mg 6mths then 1mg for about 6 mths This time my bloods have been eratic up and down so dont really know what to expect from now on !! My Doctor always says not to reduce if I am going on holiday or anything hectic is going on but hasnt mentioned upping the dose to cope with it Green Granny you have certainly had a terrible time so I am pleased to hear that you are now doing well Im very interested also to hear what everyones consultants say and I also would like to have an adrenal function test if I start to have problems again WHEN I get back to 5mg but can also see the theory behind taking 5mg forever as you would take insulin All very interesting Yes we are having beautiful sunshine Ellen even though its still very cold and my horses were sunbathing today and are starting to moult so spring is on its way but no Daffodils because of all the snow !! Thanks as always to Mrs K and Mrs O for all their help they give Havent heard anything on the news today wish I could have made London tomorrow Hopefully more research will now be done Best wishes to all

Hi Mrs O,

Thanks for the info regarding Regnar's regime. I'll have a look at it later today and print it off (another useful tip picked up yesterday!) and as you say, more use when you get down to 5mgs which is some way off yet, so will tuck it away for later. It would be nice to think I could be a classic '12/18 months and you'll be over it' example as promised by the Doctor when she first suggested PMR but I'm not holding my breath! The Consultant is far more realistic I think. If I can carry on the way I am I'll be satisfied. For 7 whole days now I haven't suffered the mind numbing fatigue that is so hard to describe to anyone who hasn't experienced it. The aches and stiffness I can cope with, but my brain turning to treacle and wanting to curl up in the corner of M&S under the 'summer cargo pants' rail and sleep forever is more difficult! But of my goodness, doesn't the sunshine help 8) Just wish it would warm up a bit. Keep well, and thanks again for the info. Lizzie Ellen