Predisione

Hi Janice, it depends what dose you were on and what you have reduced to. It seems to be more difficult, the lower the dose.

What dose have you been on and what have you reduced to?

The main criterion is "How big was the change?" If you drop too much at a time it can be very difficult - it can feel just like a flare and be very difficult to tell which is which and you can fail to the extent of needing to go back to a higher dose.

No drop should be more than 10% of your current dose - so to all intents and purposes from 15mg you should never reduce by more than 1mg at a time. The 10% rule has been accepted for a long time by top experts. And many of us! Of course, as you get to a lower dose 10% is less and less. At 10mg, 10% is 1mg. at 5mg 1mg becomes 20% - you need 1/2mg at a time by then. And trying to drop from 3 to 2 is 33% if you try 1mg, 17% with 1/2mg. It isn't easy.

Recently a group of us have realised we don't do well even at that rate if we try to do it "overnight" and a few of us have worked out reduction schemes spreading it over a few weeks - all slightly different but basically the same. A rheumy in the north of England has also been shown one of them and has been trying it with his patients. So far no one has failed a reduction, no one has experienced a flare and no one has had any steroid withdrawal problems. We have been able to spread 1mg drops over about a month or so but then we are also able to start the next reduction as soon as we have finished one.

My reductions are VERY slow. I use the following pattern to reduce each 1mg:

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction straight away, no real need to spend a month at the new dose.

Eileen

Thanks, Eileen, for confirming my instinct.

My rheumy was reducing me from 15mg to 12.5 in one jump (we don't have 1mg doses where I am right now). I decided to ignore him and alternate 12.5 with 15 for ten days instead and then see how I feel.

So far so good.

I think it does depend a lot on the person and how close they are to the magic "lowest dose that controls the symptoms"! At higher doses lots of people might manage the 2.5mg at a time OK - I certainly did at the very beginning, nearly 5 years ago. But when I was pretty much forced to drop below the magic level and then had to go back up it was more difficult the next time - and every time I developed symptoms again it got more difficult. I was never forced again - but I was switched to a form of pred that simply didn't work for me, I just developed nasty side effects without any good ones! And had what was effectively a massive flare.

Since then, I started as if at the beginning again and have done it this way - and have steadily reduced 1mg at a time over weeks and never had a wobble at all. Now I'm resting at 5mg for a few months before trying again. Not taht I care two hoots if I don't get any further down! Feeling well is the most important factor.

If you go about things very gingerly from the start you have a win-win situation - you aren't risking being the person who can't cope with a bigger drop but are reducing steadily anyway.

Good luck and finger crossed!

Struth I just wrote a full reply and lost the lot ,lol just want to know what side affects you people experience , and are you sure its the prednisone , , my doc puts my exhaustion down to the polymy.rather than the prednisone , , better leave this now before I loose this lot lol will catch up later when my internet is working , I'm now on my mob .

Know that feeling old nanna! How often have I written a complicated reply - and whoosh, there it was gone!

The side effects I know were due to pred were excessive weight gain, muscle wasting and skin and hair problems. They started after being put on Medrol and disappeared when taken off it.

I had PMR for 5 years with no pred so I knew very accurately what PMR did to me - I gained weight because of being less active. I'd been on another type of pred - very few problems except the weight redistributed, I didn't put much more on. Medrol was hell on earth and the latest is brilliant - every possible pred side-effect that I'd had has gone. Including 35lbs of weight :-)

But there are several things that can be caused by both pred and PMR - I know I had fatigue with PMR, it wasn't any worse with pred and actually eventually went away. No bother now and still on pred. But everyone is a bit different and lots of people didn't feel terribly fatigued before pred and did after. My teenage granddaughter gets desperately tired when on pred, though she is on high doses - it isn't PMR in her case!

Eileen

Thanks Eileen ,I didn't think I would get such a quick responce , its a shame your g,daughter need the stuff , I hope she's ok , I try to not take prespriction drugs ,but that's just me , I'm coming up 85 this July ,and I would rather find the food that helps , I had another chest x ray (bloodtest came back said I had an infection some place ,doc said must be urinary problem and I said No lol so xray showed I still had a wet spot on my left lower lobe , , but I didn't give him a chance to talk about more antibiotics lol I was still refuseing fluid tabs.and refuseing increasing the prednisone lol anyway I will sort the "wet spot out myself lol I don't smoke and never did , sooo I will use the ventalin ,do some really deep breathing and get to the bottom of it lol , gee I didn't realise how many people out there are in pain and on prednisone , boy the people who made the stuff must be making a quid hey , hope you all get well soon and enjoy life , x

Thank you Eileen for posting so much great info for us.

I was really happy to get your method of reducing the prednisone. I have made my way down to 4mgs but had a couple of mild flare ups.I'll try your method and see how it works. I have been very lucky so far.

I do have a question about flare ups. I don't get pain except my behind hurts when I sit. My symptoms are general muscle fatigue and stiffness and difficulty sleeping. I also feel I'm not as stable on my feet. Some days walking 1/4 block feels like I've hiked all day. On good days I can walk for 5kms with few problems. Does anyone else have this happen?

Also, I can't seem to shed the weight even at the low dose. What type of pred are you on that is working so well for you.

Thanks again for all your help and be well.

Diana

Is the "pain in the butt" sort of between your "sitting bone" and the top of your leg? That is one of the signs of trochanteric bursitis.

Are those the symptoms of what you call a flare? They do sound very much like what happens as "steroid withdrawal" so using the very much slower version I gave would probably help. It is very difficult to tell which is which.

How often do the bad days come within a couple of days of a good day? It may not be as you walk the 5km that it hits but later!

I am on Lodotra - it is a delayed release form of prednisone, developed for use in rheumatoid arthritis to improve morning stiffness. It was found in a study in Germany that the optimum time to take ordinary white pred tablets for minimal morning stiffness is 2am - who wants to wake in the middle of the night just to take tablets? So they developed a form with a coating that, taken within 3 hours of food, breaks down 4 hours later to achieve the same effect. It is more expensive but my GP here in Italy is not restricted as to what it is prescribed for - and the only other alternative here is medrol which caused horrendous side effects for me.

I started with the 5:2 diet to really get going with weight loss although I had noticed the midriff fat was slowly disappearing once I was on Lodotra. I also restrict my carbs - I don't rule carb out altogether but eat less than about 60g/day most of the time. If I want something carb-y one day I eat it but I eat mainly leaf salads, tomatoes and peppers, less than 100g meat a day and eat fish 2 or 3 times a week. I cook with olive oil - and don't use much butter simply because I eat so little bread. That is also due to the fact that if I eat commercially produced wheat I get a horrible itchy rash - I can eat spelt and kamut forms of wheat and rye so it isn't gluten that is the problem. If someone offers me something made with any of those grains though I will eat it - but I don't get particularly hungry anyway, except when I eat carbs! I also never eat breakfast - I never liked it and it is one of the things mentioned in the 5:2 diet. I must emphasise though that isn't something you should do if you have diabetes - though the low carb approach is OK done carefully (see the Diabetic Mediterranean Diet blog for more about that).

Where do you live Diana? Not many people besides me use kms - and I usually get told off for it!

Eileen ,I have been trying to thank you about the things you said about my spur ,you explained it a lot better than my doc.lol and it pleases me that you contradicted all the stuff I said I'm not iooking forward to the cortizone treatment but if its what the pod.wants then I will , at least I have the DVD to show her , it puts mire light on the subject and no one has explained it more clearly ,thanks again , and to Diana, its klms here in Australia too lol

Yes - I laughed a few years ago on a working holiday: we went to Hongkong, Australia and Singapore. All dive on the left and kms! Ireland is too - you cross the border from Northern Ireland and suddenly the signs change from miles to kms. It felt as if we'd gone backwards and it was suddenly further to Dublin!!

Gee ,I went to Singapore in 1982 ,on an 8day deal , I was ready to come home after 2days lol I was afraid to step off the footpath lol , haven't been outside Australia since , BUT in 2009 I drove around Australia on my own towind a 10 ft caravan and had to come home for my 80th birthday (my kids insisted ) then everything went bad for me , I took a unit (so I wouldn't worry my kids ) my car needed too much to fix up to keep , got rid of that , my van was left on my daughter's farm , , then I contacted pneumonia after stepping out of a bus and tearing a ligiment in my knee , opperation , and seeing specialists they diagonised epilepsy , side affects and such I couldn't take medication then it was more penomia then polymyalgia , so I think back on all that and just wish I had not stopped ,just kept going , and I'm rambleing on again lol but I had such a wonderful time.driving around Australia , so these chats help ne a lot with handleing my problem , I'm thankful I'm nit as in as much pain as others out there , I do count my blessings

I live in Canada (eh!) in a small city about 35kms from Vancouver, British Columbia. Canada changed to metric many years ago.

The symptoms I described I call a flare up because my CRP jumps up at the same time. The pain in the butt may be from steroid reduction but it seems to happen randomly and although I've only had bursitis in my shoulder it didn't come and go so frequently. I'll see how it goes reducing more slowly.

I've never heard of the 5:2 diet but will look it up. Will also check with my Dr. To see about the Lodotra. Never knew there were different kinds of prednisone.

You seem to travel a lot. Do you find it tiring? We have just retired and would like to start exploring and I'm a little concerned about spoiling the trips by not being able to do the things I used to do.

Mrs Mac , I don't travel anymore , I wish I could , that was before all this happened , and yes I too had that pain in the butt , its just the polymalgia , its gone now , and I'm back to 1/2 mg of prednisone , I too didn't know of any different sort of prednisone , maybe a cheaper brand , ? I always ask for the real mcoy lol I'm 84 so have to fight the "stigma " of age a lot of reason I am having trouble , I also get angry with my family when they say , "but mum ,your old now and you have to accept it " but I won't lol on Friday at the doc I had to have my health test with the nurse , you know what I mean , count back from 100 , and write down a sentence with a verb and an adjective in , well that one stumpped me , I said to the nurse ,"gee I might have to google that one lol " she laughed and said she wished her mum would get on the net , anyway I think I passed lol but I still can't walk far and can't get down on my knees to weed my garden , , I'm not in so much pain and just want my life back lol but there is where the age comes in , I just need to accept it , but please take it easy with the drop down of prednisone , I did it slowly , and at least 2or3weeks apart and only by 1mg a time

MrsMac - ah yes - should have remembered that! And Canada is NOT the USA! The travel has been work-related - my husband was in the NHS in the UK but also continued the research he'd been doing before on oxygen transport. The annual meeting was in the US one year, Europe the next and with occasional forays to the Pacific rim. The only place we haven't got to has been your neck of the woods and I want to get there!

I still manage the travel even with PMR - but I don't usually plan expeditions ahead of time. If I feel good and there is a trip that doesn't look too hard work I go. No stairs, no long walks on rough surfaces. I say no if I don't feel up to it. When we went to S Korea I got there and went to bed and slept for about 14 hours, got up at stupid o'clock to get the train across the country and went back to sleep on the train. Then rested at the hotel when we got there - after that I was fine. While a rested my husband went out to explore - and got soaked! Told him it served him right!

It is possible to travel - but the one thing you must learn as long as you have PMR is that you are unlikely to be able to do what you used to do. The goalposts have been moved - maybe not permanently but at the end you are older than you were before. That also makes a difference.

I doubt you will have Lodotra in Canada, it has only recently been looked at in the US. It was developed in Germany so is ahead here. It is also very expensive relative to ordinary pred - they are looking at using it in PMR in the UK but I doubt they'll use it much. They even make a fuss about giving enteric coated!

old nanna - there is no "real McCoy" pred. Ordinary pred is so far out of protection that anyone can manufacture it. It's been around well over 60 years. There may be a difference between the different companies in terms of the fillers and carriers to make the tablets and one sort may suit you better than another. Both enteric coated and Lodotra are special forms with a coating so the pill travels through the stomach before being broken down and absorbed. Lodotra is still very new so still under licence and expensive but not widespread.

I'm not sure 1mg every 2 or 3 weeks is slow! That's positively speeding by my standards!