More \"maintenance\" ?

Well Green Granny, if you're being stupid, then so am I :weird: I've always been under the impression that I was aiming to get off the Pred, albeit very slowly. Having said that, my Consultant has indicated that about a third of her patients never get off steroids completely and my GP friend says he has several patients who have been on 5mgs for years. But I didn't think we were actually aiming for a 'maintenance' dose! I sailed through the (very slow) reduction until I hit 2.5mgs - and oh boy my body did not like that extra little .5mg reduction. In the end, with all the anxiety surrounding Jake's operation I decided to stop the reductions until I was feeling better. I'm still on 3mgs, thinking of upping it a bit as I hit a really bad patch once Jake started to recover (I think you handle these things at the time and when its all over, just fall to pieces :wah: ). Anyway, I digress (as I often do). I'll be interested to hear what our regular experts have to say regarding a maintenance regime. Take care.

Love from Lizzie Ellen

Let me start by saying I haven't seen the leaflets. However, this morning I posted at length (nothing new there then!) over on the American forum which some of you also read to try to explain to someone why the doctor keeps trying to reduce the pred dose. It occurred to me at the time that it might be useful again and I copied it! I might be wrong but I think it applies here and I will add a bit to it. I warn you - it's long, but I don't think it is difficult to understand. If you know how to, I would download it and print it out. Once you have read it - ask any questions you like and I'll try to answer them.

I'll try to explain the thinking behind the pred reduction:

When you are diagnosed you are given a dose of pred that will almost certainly deal with the amount of inflammation usually found in PMR and steroids are the only way of dealing with it at present. Nowadays in the UK the recommended amount is generally 15mg, occasionally 20mg per day. In the past they used much higher doses and even today some doctors still do. It may even be that it is difficult to get it under control at first. A higher dose will do it quicker, I had a lower dose (15mg) and it took a few months before all the bursitis had gone, the muscle pain went quickly. Studies have been done which have shown that the 15-20mg level is enough and obviously means that the patient is exposed to less artificial steroid than if they are started on 40 or 50mg which are used in other diseases where steroids are used to combat inflammation. I'm thinking there of asthma or flares in Crohns disease and so on. However, there the pred is used for a short period of time, as soon as the inflammation there is reduced the steroids are tapered very quickly and stopped.

In PMR the inflammation is being caused by an underlying disease process which hasn't yet been identified and all that can be done is treat the symptom - the pain and stiffness caused by the inflammation - by reducing the inflammation. So you give a dose of pred high enough to get it under control - and if steroids didn't have any downsides you could stay on that dose for a long time and feel great, ready to springclean every day! However - steroids are not vitamin pills, they have more than 80 recorded side effects. Some are relatively unimportant but others are much more significant and a few even life-threatening. That doesn't make them bad drugs, all medications have side-effects and even ordinary OTC painkillers can be very dangerous if not used carefully and correctly (quite modest amounts of paracetamol can kill by damaging your liver, for example). So the aim is to get you reasonably symptom-free and then try to reduce the pred until you find the lowest dose that will keep YOUR symptoms under control. That will obviously depend on how severe the underlying disease process is. The disease is still there but you are not suffering. In some ways it is like diabetes. The body doesn't have enough insulin to deal with the sugar you are eating so you become ill. If you give medications to boost the insulin or make what is there more efficient you are no longer sick as a result. The diabetes hasn't gone away, if you stop the medication you will be ill again. With PMR if you stopped the pred - the PMR pain will return pretty quickly.

So it becomes a test - give the patient a smaller dose of pred, is the patient still able to function and be in no pain? They're OK, leave it a few weeks and try another reduction. Are they OK? Yes - rinse and repeat! No? Pain is back, OK, we need to go back to the dose they were OK at and rest here awhile before having another go. The dose that keeps you happy and able to function is the right dose, if a smaller one means a return of the PMR symptoms, it is too low - for the moment. In many patients, about 75%, the disease process causing the PMR will die away after a few years - anything from 1 to 4 years. This is what is called remission. What is causing the diseas

Hello Green granny

No I thought the aim was to become steroid free but my Doctor also said that she had patients on 5mg forever I think she was trying to break me in gently when I had my blip last year !!

I thought it was bad enough having PMR twice let alone having it forever !!

Just got to 2mg now and now have to decide how I get to 1mg !! I really wish they did .5 They are so small they disintigrate when you try to cut them !!

Mrs G

Hello Eileen

You posted this while I was writing mine ! You type a lot faster than me !!

That is very clear and a very good explanation and I personally feel it deserves a place where it could be seen by everyone when they join the forum It could certainly go somewhere like that on the other forum

Mrs G

Thanks MrsG - half of it was already written and saved on the computer! It's all saved so if anyone wanted it put anywhere else it isn't a problem.

Have you got a proper pill cutter from the chemist? We have one because David has developed a very complex dosing scheme for his Warfarin which means his INR hardly wriggles - unless he has to take antibiotics but he just ignores that :roll: :wink: - and he has to halve tablets to do it. In fact he had two and has kindly donated one to me. They are superb for cutting tiny fiddly tabs - there is a bit of crumble but very little and practice makes perfect!

Glad you enjoyed your bedtime reading :lol:

Eileen

Thanks Eileen, that's very clear and I think sums up what has been said on this forum, as I understand it, for a long time. I suppose for me it is the figures mentioned - 5 - 8 mg as being absolutely fine that puzzle! You will correct me if I've got it wrong but it seems there's no real certainty as to when we can be fairly sure that possible unpleasant side effects stop, and also when our own adrenals start to function again - so I just wonder why these particular figures are apparently OK?

I understand that many people may not come off steroids totally, but 5-8mg does seem a high figure. Most of our doctors seem hell bent on us being off ASAP! And I suppose most of us are hoping to come right off - though at a considerably slower rate than most doctors.

Your explanation is certainly worth printing out especially for anyone new to PMR and its problems! So thanks again.

Mrs G - it sounds as if your GP sort of agrees with a larger dose being acceptable long term, whereas mine has only talked in terms of 1 or 2 mg.

Anyway what good progress you're making! Pam

Hello Eileen

Yes we have got a pill cutter so I will practice a bit or the maths of getting to 1mg will be too much for me !! I do keep a diary sheet with my pills as I had worked out my own reduction system like Ragnars to get this far

Yes Green Granny my Dr says they dont worry too much about side effects at 7.5 mg and Im sure she said if you are under this I didnt need further Dexa scans She is trying to get me off them but when I went from 4 up to 15mg again I think she was preparing me for the fact I might have this forever and 5mg would be acceptable We will wait and see

Mrs G

An expertly put \"dollop\" nonetheless, Eileen.

I've got so used to having the' luxury' :wink: of being able to do 'snakes and ladders' with the doses over the last few years when necessary and am going to feel 'up the creek without a paddle' without that 'luxury' if/when I reach zero because being completely off the steroids, if the worst should happen, the only way back for me could be 40mg again :roll: Not that I'm being negative :wink: .......but I'm sure I've become addicted to this little round white thing that's been part of my breakfast for so many years! :lol:

Thank you Eileen

I had been working away (although brain still foggy) on an explanation and lo and behold you have done it.

I have downloaded it and will be doing the usual.

I really feel we must have been meant to meet up

Mavis

PS I have asked for a copy of the 'Yellow Leaflet'.

Hi Eileen

I had another go with the pill cutter this morning and managed not to waste too many tablets so will perservere as that will be mpre useful at hopefully this lower dose

As Im on another throat infection Im having a rest at 2 for a while As I seem to get about 4 throat infections a year I might ask my Dr about Better not mention it to Italian brother in law ( he is ear nose n throat ) or he will have me on the next plane to sort me out !! I did once arrive for New Year many years ago with cough colds the lot and he was treating me with drops of something he was writing a thesis on !! but he did sort me out in a few days ! are all Italians hypocondriacs ??

Hope you are having a good day

Mrs G

Hi MrsG - Italians hypochondriacs? Whatever makes you think that!!! :roll: :wink: Judging by what we saw at our friends at Christmas they could create unlimited strains of antibiotic-resistant bugs all by themselves! The son (a junior hospital doctor) had a cold and had to go to bed :roll: , mummy wanted daddy to go over there and fetch him home as he'd be far too ill to drive the 30 odd miles and feed him antibiotics! He had a \"fever\" - so needed all manner of whatever to bring it down. The fever is there for a reason - to kill the bugs! You only need to bring it down if it is getting high - whatever! The claim was flu - but it was the usual \"flu\", he was fine the next day.

In fairness though - they, like the Germans, do use some herbal stuff which can be excellent!

Have you tried reducing by taking the new dose on just one day the first week and then increasing the number of days per week one day at a time, or even less? That is the other alternative if the broken pills is a pain - you need to make sure it is firmly positioned and press firmly. If you are a bit reticent about the press it does tend to crumble. Of course, it's typical that the pill you need to cut is the smallest in size as well as dose!

cheers, Eileen

Yes all the family here think Italians are hypocondriacs since we have had one in the family for 25 years !!

They seem to see Specialists at the drop of a hat and were amazed that if you have high blood pressure you werent immediately sent to a Cardiologist !

I did read somewhere that the ratio of Dr /Patient in italy is 6 times as high as in UK ? I think it would need to be !

I did quite well with the pill cutter this morning and have 12 out of 8 tablets so if I can manage that I will carry on as it will make it easier at this low doseage Not going to do anything till throat better and after bloods and Dr in a week or so I have learnt a bit of patience at last !

Mrs G

You should see the A&E dept here in the winter - heaving with Italians who've fallen over and \"need\" an x-ray! During the H1N1 scare the Italians down south were turning up at the hospitals demanding to be tested for flu - no contacts, no symptoms, just hysterical. I have to make it very clear here that I am NOT an Italian - if I say it hurts, it DOES. I had quite a run-in with the male charge nurse on the ortho ward when I broke my leg who wouldn't give me the pain relief the consultant had written up - until I clyped to the doc that he wouldn't give it me. I gather he had quite a lecture about treating everyone as Italian (this is South Tyrol, not Italy except by passport but loads of tourists are Italians) :roll: :lol:

Eileen

[quote:e88ff83ed4=\"Green Granny\"]Started a new thread as this is a slightly different query.

I've just been sent the very good yellow leaflets produced byPMRGCAuk. Lots of good stuff but, to quote:-

\"Gradual reduction to maintemance dose of 5 to 8mg per day(may take several months).\"

I have never had the idea of a maintenance dose for PMR - I just thought that one kept on reducing slowly, and comfortably, until one reached a point where symptoms, hopefully, had vanished. Am I being stupid or misunderstanding something? :? :?[/quote:e88ff83ed4]

Green Granny when I first got PMR last November and went to the doctor she said \"after a few years the pred dose will decrease but she also said i will be on a low dose for life :grrr: