What a difference half a mg makes!!

Hi Eileen

I had been wondering if your recent journey back to the UK had contributed to your flare but at least you've cracked it now with the increase - well done and better luck with the next reduction which you might just be able to do more easily, fingers crossed.

I did manage to reduce 1mg monthly down to 5, give or take a couple of flares, but then below 5 has been a different kettle of fish :fish:. I'm sure there was method in my rheymy's madness(!) to discharge me when on 2mgs! I wonder if I'd ever have got to here (1mg) if I had not tried Ragnar's successful method even though mine is so much more painfully slow than his.

As for the doctors putting their thinking caps on........some of them, it seems, can't even diagnose PMR/GCA let alone how to reduce the steroids! :roll:

MrsO

EileenH

Did you ever try Ragnar's method?. It seemed to work for quite a few PMR people.

Remember, I don't have PMR - I have GCA only and really I cannot say how you feel as I just do not know, I have not experienced what people with PMR feel like and I hope I never do - just like I hope none of you ever get GCA.

I have avoided both GP and Rheumatologist over the last 4 months. So no blood tests, no visits just me. I know what my symptoms are and what to look out for and each time I wanted to take a drop, oh the markers were up - blah blah blah and it ended up in a stand-off.

So me, being me, thought 'markers are a guide and are necessary, but how you feel is also essential'. So I have come down from 7.5mg at Christmas to trying 3mg from today. And I have a clear week so its suck it and see time. But I do have 60mg standing by.

I think all this proves is that as we get to know our illnesses and our own bodies better. We are able to control the dosage better.

I still find, when talking to people, that the hardest thing for them to accept is steroids. They blame the steroids for everything and its just not so - yes they have side effects and most of them are livable with or can be coped with one way or another. We are all trying to control the symptoms with the limited medication available at present.

After four years I have come to the conclusion there is no definitive answer to how many, how to drop and when.

The GPs, Consultants et all are doing the best they can for us - but the bottom line is we have to help them understand that whilst we will try and follow their advice - blanket answers are not the be all and end all. We are all different.

We know what steroids can do to us - but we know how we feel without them. And I know I will stay on the lowest dose possible for the rest of my life and if I never lose another ounce or am able to walk no more than two car lengths then that is the hand I have been dealt with.

Eileen, don't suffer, its just not worth it. We get one shot at this life, its not a rehearsal, live it to the fullest possible.

And guess what I am saying not 'Just Saying but 'just stay as well as you can'.

Hi both!

Oh, definitely MrsK! I couldn't agree more! And the same for your sentiments too Mrso.

I'm getting quite concerned though about the number of people on these two forums (the USA one too) where the doctors are just not listening or thinking - or at least that's the way it appears. You are extremely lucky in having both a good GP and a good consultant and I am very appreciative of my GPs in Durham - but will have to make friends with a new one soon as we'll be transferring our permanent UK address!

Even with the guidelines being available online, some of the initial steroid dosages mentioned for patients diagnosed with PMR are mind-bogglingly high. My GP in Durham was only too happy to google things - he never felt it suggested a lack of anything on his part. But beyond that, there seems to be such a lack of understanding of the difference it can make to a patient when the dose is reduced by even a very small amount - and that was my reason for starting this thread. I tried reducing by half a mg on a 2-day dose and alternating old/new - you can't get a smaller reduction than that - and that 1/2mg made such a difference. And at the other end too - at 17mg I was in much better shape than most of the people who post here, whatever dose they are on. But that other 1/2mg has made a massive difference. I'm at the stage of comfort I was before the flare on 13.5mg per 2 days. It's not a massive increase, 4mg/2 days.

What is interesting, too, has been to identify the very first signs of a flare. At least, I think I have worked out exactly what the first sign is! I get discomfort across my sacro-iliac joints and when leaning forward there is the first suggestion of a muscle spasm. Standing or walking makes that sacro-iliac discomfort worse. The next step will be to see if I can abort a flare at that stage - not that I want the opportunity to need to do so, but you know what I mean!

And yes, MrsK - I've also noticed this terror of steroids, from patients and professionals. I also agree with you that steroids are being blamed a lot for PMR symptoms and effects. It's such a strange disease, it moves and changes all the time. But a couple of threads have been discussing various pains and ailments - rib pain, itching and eye problems spring to mind - which I'm sure are part of PMR, seem common amongst our groups but are never mentioned in any of the guidelines. I know Elliot has his survey going on - I haven't contributed because, frankly, I can't remember some of the things accurately enough after 6 years! Nothing to do with PMR brain or steroid brain, just plain too long ago! Another thing is irritability - BAD during the flare, nearly all gone with a higher steroid dose, so nothing to do with the steroids. I remember someone else mentioning swearing being a part of her PMR too!! :oops: MTX seems to be very popular as a trial - but sorry, blood tests every few weeks, NO DRINKING, not a nice drug at all - and being a bit fat and maybe, possibly, one day, a hip fracture, does seem a better quality of life to me!

So we need a meeting somewhere with patients having a big amount of input. I never get time to ask questions/provide info to the GP who is experienced with PMR, she's always in a mega hurry whatever appointment you get with her. The one who will listen and discuss irrespective of following patients has been on his jollies the last twice I've been - obviously paid too much :lol: And I won't even mention the consultant I got...

One day I'll get to the doses you two are at - it's not quite a year yet and I'd achieved the equivalent of 6.75mg/day which I thought was quite good! Question: is it harder to get the dose down if you were untreated for a long time????? The risk of non-treatment of PMR resulting in GCA does seem quite high, I was lucky (though, in retrospect, there was something that I'd worry about a lot more now)

cheers from a roasty-toasty northern Italy to a \"threatened by a mini-hurrica

Hi again Eileen

Re your concerns about some initial steroid dosages being \"mind-boggingly high\", my physio has recently told me that his grandmother (who lives in Italy!!!) has been diagnosed with PMR and put on 40mgs of steroid. In answer to my query he said that she doesn't have headaches, eye problems or jaw problems and I have really tried to get through to him that this dose is way too high for PMR. As he was going over there for a short holiday, I referred him to the North East Support site and the Guidelines in spite of which I now hear that she has put on so much weight and feels so uncomfortable trying to walk to the shops that she has more or less taken to her bed. He said the language barrier makes it difficult for her in dealing with the doctors. I'm a little surprised that he didn't manage to sort something out when he was over in Italy. She did apparently follow up the tip to take live yoghurt before this high dose. It makes me wonder just how many poor people without computers and therefore being unaware of this site are suffering needlessly from the side effects of such an unnecessary high doses. We are indeed blessed.

As to \"Is it harder to get the dose down if you were untreated for a long time?\" this has been one of the million dollar questions in my mind for 4.5 years! We would have to come across a few other people with exactly the same experience to possibly come up with an answer. Certainly, in my case, a few months of great difficulty and pain when trying to walk and without a diagnosis and treatment, as you will know, led to a further 3 months in bed. As the incredibly high blood tests markers slowly reduced and I was out of bed and then out of the wheelchair, the rheumatologist said \"I don't know what you're doing but keep doing it as these blood tests are slowly showing reduced inflammation\". At around the 9 month stage he discharged me and answered my query as to what I was suffering with as \"some severe rheumatic, inflammatory condition\" ....Nooooo!!!

As to \"the risk of non-treatment of PMR resulting in GCA\", I certainly fell into this category but the question here was did a change in BP medication from a beta-blocker to an ace inhibitor within 3 weeks cause the massive head pain, jaw pain, vomiting, weight loss and return of all the body pain because undiagnosed PMR was already lying dormant in my body? The new rheumatologist thought it a possibility but said \"we'll never prove it\"!

Eileen, we have loads of unanswered questions, another being how does someone like Mrs G unfortunately contract PMR for the second time years later but then find the journey to recovery so different from text-book the first time to flares etc this time - the same body but quite different experience?

Cheers for the news about a forthcoming mini-hurricane and monsoon here - do hope you're joking. Think I'll go for a quick walk now!

MrsO

Mrs O - you couldn't make it up, could you? :lol:

I'm of the opinion that it should be made exceedingly difficult for anyone who doesn't \"do\" the local language to move places - it's fine going shopping with a dictionary but being ill is a whole new ball game! We, however, had practised that in advance! Very successfully, I might add.

I'm also quite amused at the idea that I have a better idea of your weather forecast than you do! Sky News here is so much better than in Gb - we don't get the adverts in the same way, they are posh-ish international ones and the gunge ones are replaced by posts of news items that are not usually part of the main news. Mind you, they still seem to have no editors paying attention to what is being written or broadcast - an endless source of amusement :roll: :lol: !

Hope the walk was nice,

Eileen

Hallo Eileen and all

Glad to hear that you ( Eileen) have sorted your flare by micro adjustments to the Pred dose. I think we are lucky if we are left to organise our own levels ( within reason ) Responses and reactions are so variable I don't see how our doctors can expect a one size fits all approach to be successful.

Re starting doses ( that 40mgs sounds horrendous ) the thinking has obviously changed in the ten years since my first episode when I was on 30 for 4 weeks,25 for 2 weeks, 20 for 11 days, 15 for 10 days. After that it was slowed down but apart from a couple of glitches on the way down to 10, progress was smooth and I finally took my last dose 3 years after starting. This time ( Feb 2008 ) my starting dose was 15 ( same doctor ) but progress has been much less smooth and adverse reactions, of which I had none back in the 1999-2001, have been a serious problem. Can they be related to the lower starting dose? Why did the thinking change?

When I first posted on here my remarks about steroids were not appreciated I was forgiven, though when I apologised for my OTT comments. ( Thank you ) At the risk of bringing the world down round my ears again I must say that those who, like me ten years ago, have not had adverse reactions are the lucky ones.[quote:8c92df1f8d] I've also noticed this terror of steroids, from patients and professionals.[/quote:8c92df1f8d]

All I can say is that if you fear for your sanity you might be forgiven for feeling terrified. Yet that has now passed and I seem to be making progress. No accounting for that, either. It is very unsettling and I am never confident that I can trust this drug. I am not the optimistic confident person I used to be and, yes, I do blame the steroids even while I am grateful for the relief from pain.

I was able to reduce from 15 to 9 in two months but am now going much more slowly, at 0.5 mg per month reduction and have to consult again when I reach 7.5 next month witha view to going even more slowly. I did have a bit of stiffness going from 9 to 8.5 but it resolved after two or three days. I was grateful for this forum at that time where I read that others also had to give themselves time to adjust. Thank you all and may all your reductions go well. BettyE

Hi Betty,

First of all - the terror bit. I do really get the point about the psychological effects of steroids but, as with all the side-effects, mercifully by no means everyone suffers from it. The terror I'm meaning is the desire to avoid steroids at all costs, whatever that means for their on-going quality of life. The end effect is that some patients - and doctors - won't even try steroids or if they do try to reduce far too quickly. As a result, the symptoms return and then seem much more difficult to get rid of. I absolutely agree that if you are one of the people who has bad mental reactions to steroids that there is a ground for that fear. But if it's a case of putting on weight or having peach fuzz but being able to live - I'm afraid I'll always take the weight or hairy downside.

Second - I'm beginning to wonder if what is needed is a really good dose of steroids to get the inflammation under control and then take a few weeks to drop that dose as far as possible but quite fast until the first niggles reappear. Then not immediately say \"that's the steroid reduction doing that\" but go back to the dose above where you had no problems and stay there for a while before attempting to go down again. My idea starting this thread was to show just how sensitive we can be to the dose change - no-one would suggest that a 1/2mg change would cause pain due to steroid withdrawal would they? The initial drops could be in 2.5 or even 5mg steps with an immediate return to the upper dose as needed but then the drop should never be more than 1mg as you proceed.

This is what I understand by \"titrating\" the dose, it's done in other things to keep a very close eye on the dose needed. Of course, for most people this all supposes you have an interested and competent GP . Those of us who are on DIY care can try that sort of thing. A common theme I feel I note is that the doctors are overwhelmed by dealing with it - is it actually the wrong people we see? When I first started working in the NHS there was this very unpopular field called geriatric medicine - it is still there in some ways but you now see a \"stroke lead\", a rheumatologist, a neurologist if it might be a dementia, depending on what your symptoms indicate, and that means we are generally seen alongside a lot of much younger patients - or ones who are apparently and obviously suffering much more. If you have rheumatoid arthritis you can SEE the problem. We don't LOOK ill most of the time - and therein lies a lot of the problem.

When we say we can't get up the stairs except on hands and knees it's not taken seriously by the friend who comes to the gym and sees you in the pool but doesn't know that to do that you had to then go home and sit (or lie) down for a couple of hours. Before I was diagnosed I could get up and shower and dress (just, as long as I was quick enough to get my pants on before I stiffened up! :roll: :oops: ), then I had to sit over breakfast for more than an hour to be able to even think of doing a bit of ironing, and that had to be done in 15 min bursts with a cup of tea (that I couldn't hold) and a sit down inbetween. Walking further than a few hundred yards was not on - well, luckily I hate shopping anyway! I used to stand in tears trying to do the washing up because I couldn't hold things, I couldn't even hold a phone to my ear becaue of the bicep pain. My husband couldn't understand why I went to bed at 9pm - it hurt less than sitting. But even he still doesn't get how much it affected (and affects a bit) everyday life, how both my arms hurt from top to bottom, biceps, elbows, wrists, thumb joints. I'm a professional freelance translator - all typing. I have little sympathy with anyone who whinges about RSI and gets time off. You're freelance? You type, whether it hurts or not - or you don't get paid! (He had an outbreak of infectious RSI :roll: in his department at the time, they just wanted extra holiday,

Thanks, Eileen for a very thought provoking response.

[quote:39e20a8ddc]I'm beginning to wonder if what is needed is a really good dose of steroids to get the inflammation under control and then take a few weeks to drop that dose as far as possible but quite fast until the first niggles reappear[/quote:39e20a8ddc]

Might that possibly be why my first episode was text book. The pain relief was 100% in four hours. I thought it was magic.

In April 2008 when I had reduced to 8 from 15 in nine weeks ok I was put on 20 for 7 days when I had an emergency reaction to Alendronic acid and/or penicillin ( given for possible chest infection though I am pretty sure the wheezing was the AA raction ) and told to go straight back to 8 after a week and stay there for six weeks. That sounded a bit much but I was reassured at the hospital it was ok and so it was. The trouble started when I reached 4 @ 0.5 per month. Pain returned so back to 10 for a eek on doc's instructions. Had to give up after 6 days I felt so ill so was put back to 5. All ok until I reached 3@0.5 per month. Then felt desperate again and GP tapered to nil in 5 weeks at which point I swore never to take Pred. again which is where I joined this forum. All the rest is somewhere on here. What worries me is whether this will all repeat when I get to lower doses ro was it all triggered by the AA/Penicillin episode? Would I have done any better repeating my 1999-2001 schedule starting on 30 instead of 15?

[quote:39e20a8ddc]but then the drop should never be more than 1mg as you proceed.

[/quote:39e20a8ddc]

That should have been at the beginning of the paragraph.Can't make it play!. Lunch time. Best to all BettyE

Eileen, as you can see, this has been referred. It says it has an email or website address in it. I was not aware of entering any such rhing. Hope it gets through to you as it tookme quite a long time and is not provocative as far as I can see. BettyE

Me again.I thought about it over lunch and I remember using the \"at\" abbreviation which may have raised email alarms.

Great things computer, just not very bright. BettyE

Hi Betty - looking forward to reading it! If all it was is an at abbreviation it'll get here sometime. Now if we were warned that simple use of shortcuts is enough to delay we wouldn't do it would we? If I want to give someone a link now I just say what to google - much quicker! :lol:

Eileen

Hi all

I am not taking steroids for my PMR, as many of you know, but surely the rate at which you can reduce the steroid dose is really dependent on the rate at which your PMR disease progresses and there isn't a one size fits all solution. This may be an oversimplification but if your PMR is going to burn itself out in 2 years you should be able to reduce your original steroid dose by about 50% after 1 year and completely by the end of 2 years. If your PMR is going to take 5 years to go the reduction would have to be much slower or am I missing something?

In my own case, I am now 12 months into my PMR and whilst my mental attitude is much stonger, and am not going to be beaten by this, my symptoms have barely improved since the early extremely painful inflamatory phase was spent. If I was on steroids I believe I would be struggling to reduce the dose significantly which seems to be the problem others on this site are having. I also find that if I exert myself physically it can take a week or more to get back to where I was before and this may be why some of you find the need to keep increasing the dose.

Together we will beat this.

Regards

Bob

Hi Bob

Good to hear from you again.

There is no cure for PMR - the steroids simply reduce the inflammation and keep it under control. It will burn itself out when it wants to and not before and even then it would appear that in many cases it simply goes into remission.

Although various snippets of information state that the disease burns itself out in 2 years, that is so not the case. I was told 18 months to 2 years by my rheumy but when I reached 2 years the goalpost was moved to 3 years!

I spontaneously recovered from undiagnosed PMR without treatment after 1 year 3.5 years ago..........it returned a couple of months later together with GCA. I know of a few people who have taken steroids and their PMR has burnt out after one year and then there are others like several of us on this forum who are taking quite a lot longer.

We are all very different in both our symptoms of PMR and our response to steroids. There also appear to be moderate forms of PMR and more severe forms. So there will never be the cut and dried answer that you are seeking unless future research comes up with a cause and a cure...we live in hope!

Yes, certainly, as you have found, if you over-exert yourself physically you will unfortunately pay for it and a very big part of our learning curve is knowing how to pace ourselves.

Keep fighting it!

MrsO

Hello all

With my first bout of PMR I think mine probably went away after a year I was on 20mg at first but went to 1mg in 12months with bloods of 2 to 3 and stayed on 1mg for a further year with regular blood tests

I was fine for nearly 4 years I think before it came back and as I have said before it has been a bit of a roller coaster !! I am tryng 5.5 from today but keeping a very open mind on it My 2 years will be up in Oct

Early in the year when I had to go back up to 15mg in Jan from 4mg in Dec I still felt as though the PMR was very active and would be having a few paracetamols first thing before the steroids kicked in now ( fingers crossed ) I feel the PMR is having a rest I just feel different I can see that .5 would make a difference but I think PMR fluctuates and at another time you may have succeeded

I have had one achy day last Fri and I had spent a lot of Thur on a long lunch and afternoon with friends so perhaps its the sitting around that makes me worse

I have done quite a bit over the weekend but dont feel the slightest bit guilty about a good rest afterwards I am going to go very slowly with the steroids and a few bad days will mean I will up the steroids

Best wishes to all

Mrs G

Bob the Builder

We run two support groups in the Northeast and have male members.

We also have an exclusive email support group for men.

Non of them are able to do without steroids. Most of them have little or no side effects from the steroids, not like the female members. They play golf, still ride bikes, still go walking and still active. They are able to take a drop quicker and with less bother than the females. But as much as they have tried they cannot do without the medication as low as it is.

Most of them seem to recover within two to three years. But some have had one or two relapses.

Conclusion in the groups is that its all down to hormones. That they have not had babies, were employed, but being all old fashioned men,(not new man) who did no housework, looked after families etc. Had wives who looked after them and some still do so.

On the other hand, the women are still trying to look after their husbands, if they still have them, still acting like carers, still want to be involved with their grandchildren, still do the majority of housework.

Bob PMR does not progress, it has a mind of its own, nobody can tell you when it will go, stay away or come back. There is no known cause or cure. The steroids are only there to relieve the symptoms.

We we wish there was friendlier medication and a cure.

Our mental attitude is no different to yours, none of us \"wants to be beaten\" by anything. Sometimes you just cannot win.

Its not that we are 'struggling to get off steroids', we are struggling to get down to the lowest dose possible to keep us at a bearable pain level and to regain a reasonable life style. No, not the one we had before, that will only come when PMR decides to go away all on its own.

I am happy that you can manage your pain without the medication and will be pleased when you can post that your PMR has gone away.

But, Bob I am really questioning do you have PMR?