Was diagnosed with PMR in December

Bones, joints and muscles
1

I had been experiencing, over a period of 18 months, a growing band of pain across both hips and lower back, pain in both groins when walking, problems with my upper arms and neck.

It reached a point in June last year where I was racked with pain and my mobility was reducing to a point where I could hardly walk, sit, lie down without pain.

My doctor prescribed anti-inflammatories and pain killers and referred me to a physiotherapist. It was my physio who raised alarm bells about what was happening and spoke to my doctor and asked her to refer me to a rheumatologist. I then lived on Co-Codamol until October when I saw the consultant. He announced I had osteo-arthritis in all my joints but the problem giving rise to all the pain and immobility was spinal sad Sent me for an MRI. I waited until November for that and then finally saw consultant again beginning of December. All this time life was on hold..... if I took the painkillers could not function mentally or physically because they knocked me out..... if I didn't take them was laid low by horrendous pain and feeling so ill.

To cut a long story short, he finally diagosed PMR when my MRI returned as normal. Within three days of starting 15mg of prednisolone was painfree! A miracle.

I then began researching what this PMR was and was shocked. I am only 59 and have been very healthy to date. ( Apart from oral Lichen Planus for the past 16 tears!)

My physio has given me a programme of exercises and rest, swimming and generally working slowly to get muscles back to where they were at some point in the past.

Have to take, like rest of you, Vit D once a week and other six days calcium. Trying to get myself into a routine with that!

Had to drop my 15mg to 10mg a week ago ( following consultants instructions) and after 24 hours all the horrible pain etc was returning much to my horror. Saw my doc today ( who is now going to manage me!) and she put it up to 13mg telling me the 5mg drop was too great.

Reading some of the posts on here makes me realise I have a long hard road ahead with ups and downs.

Night sweats horrendous and thought I had seen the back of them after the menopause sad Get the occasional day sweat too....... it appears many of you suffer these and is normal? Also have just had my first 'bout' of thrush and I presume that this too is due to the steroids.

I was, prior to all of this, an avid walker......... now down to a mile if I am lucky and doing it slowly and carefully.

Any advice from others who 'walk' and when you found you could get back to doing your 15 miles????? Or is that something which will never happen again for me?

Sorry, have rambled on but am sure you understand how I am feeling, everyone of you having been in this place too.

Any help/advice or being pointed in another direction for info would be very welcome indeed. smile

2

I am not a walker but I am a bike rider. I have had PMR for just over 2 years, I am down to 41/2-5 mg pred alternate days [ have been down to 21/2 for a short time] I am riding the bike or going to the gym daily not as strong as before the PMR but getting there. I am a male and all the woman on this forum tell us men we don't suffer quite as much as women with PMR.

Stay tuned to this Forum it is a big help, there are a number of women that can give you great advise.

The only advise I can give you is listen to your body when working out and reducing the pred. You know best.

Andrew

3

Hello fiftiesgirl and a warm welcome but I'm sorry to hear that it's the pain of PMR that has brought you here - however, you have come to the right place as there are people here with a wealth of experience and information to make you feel at home! :lol:

I'm amazed that your Dr sounds more clued up than your rheumatologist with regard to reducing the dose! :shock: As many others will tell you, reducing from 15 to 10mgs in one go is not to be recommended as you have unfortunately discovered. Hopefully, now that your Dr has suggested you go back up to 13mgs, you will become more comfortable.

With regard to the night sweats, hopefully these should reduce as you reduce the dose.

There are many possible side-effects from taking Prednisolone although thankfully none of us gets all of them and some of us lucky ones don't experience any at all. Thrush is, unfortunately, one of those possible side effects. This could be helped by taking a live yoghurt daily before taking the steroids, preferably organic, and definitely one without any added sugar as that would aggravate the thrush. I have, in fact, taken a live yoghurt daily throughout my few years on Prednisolone, partly because I was unable to take the stomach protection meds given alongside the steroids, so I take it as a natural stomach liner.

As regards when you will be able to return to your 15 mile walks, you will only discover how much you can do by slowly increasing the distance at which you are comfortable - just a little word of warning here though, don't try to do too much too soon or you will find that the inflammation increases and consequently so will the steroids! Everyone is different, but one thing we all have in common is that we have had to learn to pace ourselves and my experience has been to slowly increase to the point where I remain comfortable but it is a very fine line and I have not been able to return to my pre-PMR long distances.

For lots more advice and personal stories, including a DVD (especially helpful for new sufferers) look at PMR-GCA North East Support, where you will find a wealth of information.

Do hope some of this helps to answer your immediate questions and I wish you a smooth and successful textbook recovery from your PMR.

MrsO

4

Fifties Girl. Hello. So sorry to hear of all the terrible pain you had to endure, only because some of the medicals are not up to diagnose PMR.

I was struck suddendly last July when one morning I woke up with the terrible pain never experienced in my life before, and my husband called 999, ambulance. The paramedic said that they would not take me to hospital, because my heart etc. was normal. I said to him : Young man, if you do not take me to hospital this minute, I shall do something really drastic to end this pain, and that should then be on your conscience fo the rest of your life !.....Ho, he said, come along then...When I arrived at A&E, they were wonderful.The doctors, nurses, run around and took ECGs Temperature, blood samples, and after about an hour, I was taken to X rays. ( I hadn about 10 !? X rays...even had to open my mouth wide, for throath X...and then the doctor said: Come along, girl..(am 87...) You are not going home tonight...Up in the ward you go...and the next morning I was given 20mgs Preds. and then went home without any pains at about 2.30pm....I am now on 7mg Preds and able to do a bit of this and that, but learning not to overdo things. On this site you have a brilliant team of \"girls\" that have personal experience of this malady, and will be of great help at any time you need reassurance. Wish you well. Granny Moss

5

Hi fiftiesgirl,

Good that you have discovered this forum.

I too am a newbie here, having only just posted my first topic. I too have had the same experience as you when my doctor lowered my dose from 15mg to 10. After initially started on 20mg which wiped out my pain, my transition from 15mg to 10 has been a disaster.

This morning I have upped my dose back to 15mg to try and get rid of a crippling pain I have in one of my legs and buttock.

As others have said, it seems that we have to just listen to our bodies and dose ourselves accordingly.

Best of luck with trying to beat this horrible condition.

gilly.

6

Hi fiftiesgirl, Sorry that you are joining us but welcome nevertheless!

This site is very useful about reducing the steroids, I guess most of us, and the medical profession, want to come down too quickly - but easy does it seems the best advice. Also many of us know when to keep the dose the same - or even up it a little - perhaps when we have a particularly busy or stressful time coming up. Even holidays.

The other thing I would say, having always enjoyed walking a great deal, is that it seems to me best to vary your exercise - not do anything for too long. Short spells of walking, or whatever rather than long repetitive goes. And if you're having a \"bad \" day for whatever reason, it can be best just to rest up a bit. Sometimes bad days come out of the blue for no particular reason that one can see - but then one feels OK the next day! :D You jus need to tell people that it's an off day. trouble is one looks disgustingly healthy with PMR :shock:

Let us know how you're getting on, Green Granny

7

Hi Fifties Girl

Your experience with PMR very much matches my own - I had it for 2 years before I was diagnosed and in May 2011 will have been 2 years on pred and am only now down to 7.5 mg and this morning I woke up with terrible pain in my right lower back and can hardly walk and also across my sternum and neck and shoulders for no reason whatsoever it is soul destroying as you think you are getting there then go back to square one.

I want to get off the pred so much but I can't imagine not taking it as the pain is so bad.

Hopefully now you are being monitored by your GP you will have a better experience of reducing the pred. Sorry that my experience sounds bad but hopefully yours will be better.

8

Just want to say a huge thank you to those of you who responded to my post and who took the time to welcome me :D

It has helped tremendously to know that there are others out there going through this too because it can make you feel alone and isolated.

All your comments have helped me so much and I now feel much calmer and more rational about this disease...... need patience to go forward!

9

Hi guys - welcome! I'm just back from a nearly 3 week holiday in the south of Italy with a work colleague of my husband and I won't go into any details here but just repeat the main point from posts from several threads in the recent past:

DON'T EVER REDUCE BY MORE THAN 10% OF YOUR CURRENT DOSE.

This isn't just pucked out of thin air. A couple of medical textbooks for rheumatologists give this ball-park figure. It is one thing to reduce from 15 to 10mg a day if you were given the prednisolone for an acute problem - such as asthma or other inflammation. If you have been on steroids for any length of time you CANNOT reduce the dose in the same way and it must be done much more slowly if you have been on them for more than a few weeks. And, into the bargain, your steroids have not cured the PMR, they have made the symptoms liveable with. If you reduce too much or too quickly the inflammation will resurface and you will be back to square one - and the next try at reducing will probably be harder.

cheers for now, keep us posted!

EileenH

10

Hi Eileen and am glad to hear that you had a good holiday.

Now, I'm going to be awkward! :lol:

I feel concerned about telling everyone \"DON'T EVER REDUCE BY MORE THAN 10% OF YOUR CURRENT DOSE\".

The general aim is to reduce the dose to the lowest possible one that will keep the inflammation under control and thereby also reducing the possibility of side effects.

Obviously the recent postings on here where Drs have advised patients to reduce from 15 to 10 in one go is way too large a reduction for almost anyone. However, whilst there are some sufferers who will have difficulty reducing until their level of inflammation is being kept under control, there are many others who are able to reduce successfully from, for instance, 15 to 12.5mgs (as was my experience) and that is more than a 10% reduction. Why, therefore, should everyone \"NEVER REDUCE BY MORE THAN 10%\" - to do so would surely mean that some sufferers would be taking an unnecessarily painstakingly slow approach (with an unnecessary risk of side effects) whereas they may have reduced successfully.

As we have found so often on this forum over the last several years, everyone reacts differently and certainly no one size fits all! Some of us are lucky in that if we have blood tests showing inflammation that corresponds to our pain levels, then we have a marker as to whether to reduce or not.

I don't mean this to come over as being awkward as you always give valuable advice but had to get it off my chest!

11

Hi Mrs O!

Sorry - should have added \"at any one time\" I suppose. If you drop by 10% over a period of 3 weeks and are fine you can then go on and try the next drop. That's not a \"painstakingly slow\" speed by any standards is it? Rick also commented at one point that 10% was the recommended drop at a go but some docs thought 20% was OK. Certainly, 20 to 15 shouldn't pose a problem - after all, most starting doses are 15mg according to the Rheumatologists Assoc. recommendations and when you take steroids short term for other conditions you would have been given 5/10/5 mg/day, maybe for a week or two at each dose. However, once you have been at 15 or so for a month or more you are into a different ball game, with the twin complications of weaning your body off the steroids AND trying to make sure that you don't allow the PMR symptoms to return.

Do you remember I posted about a study where they looked at how long patients took steriods for and long term outcome? About 25% were off steroids within a year, 50%-ish in 2 years and the rest took much longer or remained at very low doses (below 5mg) for years, even life. There was a quite high rate of relapse in the first group, meaning they went back to the high doses again and started the reduction again which wasn't seen in the second group. Even in studies where they have used so-called \"steroid sparing\" drugs, the overall amount of prednisolone taken is not reduced significantly by speeding the weaning off steroids - it's often balanced out by a return of the PMR, necessitating longer treatment overall.

I, too, dropped from 15 to 12.5 with no real difficulty. But the number of discussions we've had about how to go down shows the 10% rule of thumb is not unreasonable: taking the old dose/new dose on alternate days for a couple of weeks is, in fact, doing just that. In dropping from 15 to 12.5 by taking 15/12.5/15/12.5 for a couple of weeks you are halving the drop for that period, instead of it being 17% it is less than 9%. If you were fine you can add the rest of the 17% drop by trying 12.5mg every day. If not, you'd stick where you were a bit longer.

It's all about how you look at it - you can fiddle about cutting pills if you have ordinary non-enteric coated ones to adjust the dose or you can take the total dose over several days and rearrange the dose on consecutive days. But to go from taking any dose every day to the next dose down every day just by saying this week I'm taking 15mg every day and next week it'll be 12.5mg every day is a considerable drop - as loads of people have found and the reason we have talked so much about Ragnar's method and all the other versions of reducing the dose.

I don't think you were being awkward at all - but you have reminded me to be more careful about making sure I am clear in my explanation or justification for a comment. :oops: What is clear, though, is that there needs to be an emphasis on making sure you are fine at a dose before trying another reduction - otherwise you may be taking the steroids but still in pain because the dose is too low which seems to me to be pointless.

The thread MrsK has started with Zali's comment illustrates that very well - either you accept that you have to take them and stop acting scared or accept you can live with PMR on no treatment and then there will be no risk of steroid side-effects. Bear in mind that the treatments for many diseases are associated with longterm side-effects: if you have cancer that is cured by chemotherapy or radiotherapy there is an increased chance of other illnesses at a much later stage, often even other forms of cancer. But you wouldn't say no to the original treatment because of it.

EileenH

12

Hi to both of you

I dont think one size fits all really

With my first bout of PMR I now see that I was reducing quite fast 20 to 10mg in 6 weeks then down to 1 mg within another year During this time my bloods were around 3 on both and I had 3 years free of PMR before it came back but I dont think that was any sort of relapse as i was fine in those years I had spent about 6 months with throat infections and doing far too much physically before I got my 2nd bout

This time Im quite different my bloods were going up and down and the reductions have been the same As apart from coughing non stop !!!! I am feeling pretty good so am going to reduce at a snails pace its .5 every 8 weeks from my nearly 3.5 now because this seems to have worked for me from 5 with no problems (YET!!) and I hit a wall going from 5 to 4 last year

Our experiences differ so much I think the answer is if one system doesnt work try another

best wishes

Mrs G

13

Hi Eileen

Thank you for that response.

However, with regard to adding the words \"at any one time\", I did drop successfully from 15 to 12.5 all in one go. I then continued to successfully reduce by 1mg a month (all in one go) right down to 5mgs with prior blood tests showing normal markers before each reduction. Below 5 proved to be a sticking point for me.

The sticking point for Ragnar was also 5mgs (a common stumbling point for many we now know) which led him to trial the slow regime of reducing at the old dose, new dose on a sliding scale (something like 5/5/5/4.5/5/5/4.5) over a couple of weeks until finally reaching 4mgs, and so on, eventually successfully getting off steroids in this way. I have taken his advice and followed his regime though even more slowly, taking something like 7/8 weeks to make each 1mg reduction and then remaining there for 2-3 months down to my present 1mg dose. This really seems to trick the body into not noticing the reduction in the artifical steroid.

Perhaps people like him and I have been lucky to be able to do each drop all in one go on a monthly basis successfully down as far as 5mgs. But the fact remains that there are others like us and even some people I know who had textbook recoveries in one year without relapse.

I really just wanted the new sufferers on here to be aware that a straightforward recovery is possible.

I still stand by my view that not one size fits all and there may be a different sticking point for each individual.

I agree that there is no point in trying to reduce whilst still in pain. However, on one occasion although I was in pain, my blood test markers remained at normal so I stuck it out and it worked! Perhaps the adrenal glands were catching up with the production of their natural steroid.

If anyone tries to reduce from the higher doses (15 down to 10) by 2-3mgs at any one time (normal blood results permitting) and any steroid-withdrawal pain doesn't subside after up to a week or so, then they can easily revert to the old dose for a few weeks before trying again to see whether the inflammation is then under control.

I'm sorry that this post has got a bit longer than I intended but I hope at least it comes through making some sense to everyone!

MrsO

14

MrsO - honestly, we're saying the same thing - 1mg a month after 12.5mg is less than 10% at a time. Above 12.5mg a month you are at a dose that is generally more than you need to control the PMR, once you get to that, a 1mg at a time decrease will mostly be fine, more may not. Since enteric coated pills come in multiples of 2.5mg, that is what people tend to drop their dose by, on their doctor's instructions. With no warning to alternate the old/new dose for a week or so. Or, even worse, by 5mg at a time.

What I'm keen for people to understand is that it isn't a failure to do it slowly, to go back up a bit if the pain returns and then try again. On the North American site there are many people who are taking a steroid dose that is obviously less than they need to control their PMR in their desperation to \"do without the drugs\" in the belief that they are cured having taken steroids for a month or two. Yes - you CAN get off steroids, but you are more likely to be successful if you go about it very slowly and it is not the end of the world if you have to stay on a very low dose for several months, or even longer. The only true measure of whether you are on the right dose is whether you are restricted in your quality of life by pain or stiffness - all the blood samples in the world won't tell you that. And for those of us who don't have abnormal blood values to go by, the reduction process needs to be matched to the result. You can't tell me that the dose I am taking at present can be dropped on the basis of my blood results - even when I couldn't move without crying, my bloods were normal.

I still stand by the statement that a drop should never be more than 10% of the current dose - however you do it. It isn't going to extend the process to infinity if you drop a mg this week and another mg in 3 weeks time - if you dropped 2.5 mgs overnight and spent 2 weeks in pain you might well be told by your doctor to up the dose by 5mgs as that is the standard recommendation by many rheumatologists if you have a flare. The use of the extended regimens like Ragnar's are only means to achieve this reduction by NOT dropping more than 10% at one fell swoop.

EileenH

15

Eileen - I'm sorry but unless I'm being very dim I don't think we are saying quite the same thing! :?

When I read your first paragraph, I consider myself very lucky with the way my Consultant handled my reductions and in the way my body responded. Due to being diagnosed with both PMR and GCA I commenced on 40mgs. I was on all enteric coated tablets and advised to reduce (\"with no warning to alternate the old/new dose\&quotwink from 40 to 30 after 2 weeks, to 20 after 1 week, to 15 after 1 week, to 12.5 after 1 week and to 10 after 2 weeks (20% reduction). Unlike you and a few others on the forum, the inflammation markers in my blood tests were high at diagnosis and responded immediately to the steroids, returning and remaining at normal so the monthly blood tests were a good marker of the situation. I then remained at 10mgs for a month and then continued monthly 1mg reductions to 5mgs using a mixture of coated and non-coated tablets.

The consultant agreed that my blood was highly sensitive to inflammation which made it easier for us to know what was steroid-withdrawal pain and what was inflammatory pain. I can understand that it must be a little more difficult for people like you who \"don't have abnormal blood values to go by\" as it can prove a very reliable guide for people like me.

So my above experience has been that it is possible to reduce successfully by reductions of more than 10% \"in one fell swoop\"!

MrsO