Correct dose

Hi Eileen. Thanks for reply. No, I'm neither tall or heavy - 1.73 and 65K. However, I am quite resistant to drugs in general and I am relatively young for PMR (just turned 60) and have read that this can make symptoms more severe. When you say "a bit more" to stop inflammation building up how much do you mean? As you say 1 or 2 mg isn't going to make much difference in terms of side effects. Luckily, I don't seem to have too many side effects - skin bruises easily and cuts easily, I seem to get breathless more easily, a bit of weight on the face - that's about it. However, I do worry about keeping on a relatively high dose of pred for a long time and would like to get it down to "safe" levels but I guess that the PMR will decide when that is going to happen and I have to be patient and optimistic that nothing too serious is going to happen. The situation is not helped by my Rheumy saying "you are going to pay for this in the end" and said I needed to taper by 5 then 2.5 mg per week, which just led to flare ups. Not surprisingly, I don't go to see him anymore, relying on common sense and this forum and my GP who goes along with whatever I want.

I'll look into Bowen therepy. When my GP looked at my knees he said that it was basically tendonitis and suggested anti-inflamitory patches.

Hugh

If he thinks tendonitis - has he considered cortisone injections? Because of the delightful cocktail of drugs I take there are virtually no painkillers I can take so when I had tendon problems/bursitis the hospital suggested cortisone shots. Excellent result.

If you are relatively young - what about me? PMR first struck at the tender age of 51...

It's something to discuss with your GP - good move to ditch an unrealistic rheumy I feel. I dont think I'd worry after 7 months - I've been on pred for over 6 years now and a lot of it at well above 10mg - so way more than you have got to yet. Nothing crumbled, bone density still fine, no sign of diabetes, cholesterol back in normal range, have lost weight (not that you need to, you must be a similar build to my husband!). No pred and considerable immobility is also a risk factor for all sorts of things.

And frankly - who wants to live to 90 and not be able to do anything? If I still had every day in almost constant pain as I did for the first 5 years of PMR I'd be investigating a ticket to Dignitas.

Eileen, I know that you had constant pain for 5 years before you had any treatment.  Ever since you mentioned that in a previous post, I have wanted to ask you - how did you stand it?  How were you able to get through each day?  I can't imagine it.  Hope you don't mind my questions, but I cannot even picture that scenerio.  Thank you if you care to comment.  

I staggered out of bed (or maybe rolled is a better description) and got into a swimsuit and joggers and managed to get to the car and drive to the gym - 5 days a week. A warm shower there started the process and then I did an aquaaerobics class in a warm pool. By the time I'd done that I could move. The steam room was a blissful treat! I also did a couple of Pilates and yoga classes. I actually changed gyms to one further away that had a pool. I never used the machines. I did also go to some "seniors" aerobics classes when I felt up to it - most of them were 20 years older than me! 

I worked from home, I never had to get dressed and to work for a given time - I doubt I could have. I went to an osteopath and to a Bowen therapist every so often and between them they kept all the "PMR-add-ons" under control. That's why I am so enthusiastic about Bowen.

I would snooze in the afternoon for a bit but I wouldn't go back to bed, I was too afraid I'd not get out again! I often sat with my back against a radiator for the warmth on my back muscles. I designed my kitchen with all drawers below counter height so I never had to reach up into high cupboards. The oven was at waist height and the hob extra low. I devised ways of not needing to use the stairs any more than necessary - we had a toilet on each floor and when we moved to a smaller house that only had a bathroom upstairs it was hell! I had a massive flare and was crawling up the stairs on hands and knees, down one step at a time. So I managed to get to our flat in Italy - and there the flare faded slowly as I didn't have to do stairs!

It was after I was allowed to try 6 weeks of pred that I realised just how restricted my life had become - if I couldn't drive there and park in front of the door I didn't go. I couldn't carry things - I reloaded everything into the shopping trolley and took it to the car. I took things in just one or two at a time, heavy stuff was left for my husband. I only shopped at a supermarket I could drive to. Other shopping? Well, I'm not a shoes or clothes gal!!!!!! Not that I could wear shoes except my hill walking shoes - hardly the sort of thing for a party...

The pain was draining - which is why I say, I don't greatly care what pred might be doing to me because I'm a jam today girl. Much longer of that constant nagging pain would have sent me mad I think. I was certainly depressed. I didn't have constant bursitis pain at first, that came later. It was my hands that drove me nuts with finger synovitis so I avoided doing anything like peeling veggies and used frozen food to keep it to a minimum.

But to be honest - it wasn't as bad as I know many people with rheumatoid arthritis have to live with and you do get used to pain eventually, it's just a grinding sensation in the background that you know is there and it becomes a part of life. You do what you have to do - and I put it all down to old age and thought everyone put up with it. I also had a friend with young children who was in a far worse state than me - so who was I to complain?

I hear you, and I've read your reply to Padada and so I've nothing to complain about. First time I saw my Rheumy he said "you could have a lot worse things". I've also had friends who have got cancer and some have survived and some haven't.  BUT, I'm a mountain guide and have always led a very active outdoor life and the idea of not being able to ski I do find quite hard to take. My wife and should be beginning a sabbatical year off after teaching for over thirty years (and I never had away off through illness) and now all of our plans are on hold. So, it's easy to feel sorry for oneself, but I do try and resist this. 

My GP is pretty trigger happy when it comes to cortisone injections (he gave me an enormous one when he first diagnosed PMR). He's injected my right shoulder once with great results and injected left one twice, not so good, but this one was knackered before PMR. I'm not sure about the knees, which were also not good before PMR (I was told by surgeon that I need knee replacement but was too young at the moment). My meniscus is worn out but recent problem does not feel like this - more of tightness behind the knee which makes full extension difficult. For the last few years I've had to take strong anti-inflamatories (inflamac) each time I skied, but I won't be able to do this whilst in pred. I was told that if one already has a problem with a joint then PMR will tend to settle on this weakness.

I'll try and follow your advice: take whatever pred is necessary, not worry about side effects too much, remember that I had various aches and pains before PMR, and stay positive.

"recent problem does not feel like this - more of tightness behind the knee which makes full extension difficult"

I've hear d a few people say the same - but haven't any answers I'm afraid.

I've not skied at all for the last 3 seasons, didn't do a lot the previous season. I missed it terribly at first - we moved here partly for the skiing. But slowly it hurts less - funnily enough (I have a strange sense of humour) my husband had a hand op last season and had several follow-up appointments with the surgeon in A&E/ER. Believe me, a couple of hours spent there watching the procession of blood stained trolleys filing past and the hopping halt and maim coming out is enough to put even the most fanatical skier off! There are other factors too - most of my (equally fanatical) skiing neighbours have dropped out - partly because of the hordes of poor skiers who come on holiday and make the pistes really not very safe. I blame carving skis myself - they all think they can ski. They can't.

I'm too old and not expert enough to want to go off piste - and we don't have a lot of off-piste here anyway because the avalanche risk tends to be high and snow depths low. I wouldn't like to expose my neighbours in the Bergrettung to more work. They really do have enough eejits to cope with - summer and winter.

So we have our favourite huts that we wander up to and sit in the sun and watch - it isn't as good but we've been there, done that. Acceptance is good.

I think my knee problems are probably tendonitis where the muscles attach behind the knees. Skiing does seem to put particular strain on the knees like nothing else. I did actually ski in Zermatt last week, partially to see if I could. I coped OK, but it was mainly powder which is kinder on my knees. My legs and knees were OK the next day but then they seemed to react and got quite bad in the following days. This is when I upped my dose a bit. You said that one needs to get inflamation under control otherwise it might develop into a full blown flare up. It's a strange beast this PMR and it seems that  one needs to develop a fine tuned reaction to one's individual case.  I also have had several hand ops - for Duputren's contracture.

It's true that carving has increased accidents, because people ski too fast and cut across slopes without being aware of who is around them. So I now wear a helmet, avoid crowded days and most of my skiing is off-piste anyway. I do have the satisfaction of many years of good skiing behind me but this would have been the first year when I could have choosen when I wanted to ski rather than fitting it in between other committments. I am optimistic I will be able to do something, and I do have some ski guiding commitments to fulfl, so I hope I will be able to find some way of coping.

Helmets are de rigeure hereand have been for a long time - whereas at one time you could tell the tourists by the lack of helmet even they wear them now as they get it as part of their hire package these days!

Unfortunately, there are very few less crowded days now on my "local hill", Kronplatz. The top is perfect for groups of mixed ability as all levels of run fall away from the peak. And they are wide runs - very inviting for practising big carving curves and teaching. You used to be able to go out on the first gondola and have a good hour on empty pistes - no longer, as ski schools stagger their starts and one starts at 9.30 so parents are up there as early as they can to get in a run with the kids first. Being on the south side of the Alps also means an unacceptably high avalanche risk by my standards and being close to it means you are painfully aware of the deaths of locals which do happen a few tiems a year.

However - I never skied post the arrival of PMR without knee supports - not because I think they'd stop knee damage because they won't unless they are the metal/carbonfibre variety but because having warmer knees definitely help.

By the way - don't think I don't understand. For 3 years or so I skied no bother at all, just a bit less and spent much of the winter here. Then we moved here permanently and the first winter was great. At the end of the next winter I tore a knee ligament which healed superbly and the following winter I skied again but the weather and the snow were both rubbish. Then the PMR hit really big time and I developed achilles tendonitis due to a mix of a quinolone antibiotic and Medrol - my own fault I suppose as I didn't check for what the GP and the pharmacist had missed. The first winter I couldn't ski was very hard. I'd probably go back but there is now a big confidence issue to deal with. I'm fed up with skiing alone, my husband won't come out with me, and I'm a bit wary anyway. Most of the neighbours have given up too - it seems to be less attractive to the locals because of the increased tourist traffic. Ah well.

Were the multiple ops on the same fingers or different ones? My husband's op was for Dupuytrens - his little finger but it hasn't improved it a lot, it was quite complicated the surgeon said, and David is refusing to have another go.

It't encouraging that you were able to ski and I guess with better luck  and different social circumstances you might well still be skiing. Last winter I started to use kinesthetic tape which seemed to work quite well and friends swear by it, but I will try using neoprene supports to keep them warm as well.

My first hand operation was on my right hand, on the little finger, ring finger and middle finger and palm. After a few years I needed a second operation on the same fingers, which worked well for middle and ring finger but the sugeon was not able to straighten the little finger because of too much scar tissue from first op. I was told that this was also very complicated.

This spring, taking advantage of being off work for PMR I got my left hand operated on as my little finger and ring finger were quite bad - I was finding it hard to type. A good result, with both fingers now quite straight, but it was more work on the palm which is still a little numb but coming back. I am lucky in that in Lausanne there is a clinic which specialises in hands and the women who operated on me each time is very experienced. Unfortunately she is retiring soon which is a shame as I expect I will need another op on one or either of the hands in the future. My view is that these operations were well worth it, as living with these bent fingers is a real pain. The only problem I have now is that my little finger on my right hand gets caught when putting gloves on - all quite minor compared to PMR. I don't know how your husband's op was done. Mine was with my arm numbed and although not pleasant was OK. Once the anaesthetic wore off I did not even need pain killers.

Thank you for your reply Eileen - very kind of you to share your personal experience.  I was very interested in your statement about 'not greatly caring what prednisone migh tdo to me' because the nagging pain could have driven you crazy.  Yes.  I am still wrestling between pain relief from the prednisone and worry about what it is doing to me in the long run.   

After a recent flare (my real first flare) I am reminded that the pain and stiffnes that comes when my prednisone dose is not high enough, simply makes day to day life unbearable.  I hope I can get my attitude adjusted and simply not worry about future problems and enjoy the pain relief that the prednisone gives.  I am working on that adjustment. 

 

There is a hand specialist here but apparently the tissue in the palm was very difficult to work on - it is at least only his pinky and the major problem was getting his wallet out of his pocket ;-)  Yes, same procedure as you had and mainly palm problems but he hated it so is very unwilling to go through it again. He did have considerable pain though.

There is nothing like a flare to remind you what life with PMR and without enough pred is really like. 

Oh,Eileen, you do make laugh. I loved the bit about the wallet!! We look out for the moths in my husband's wallet! I am not meaning to make light of your husband's hand problem.

I do - so you can keep me company! It's a very neatly crooked pinky  - shame he uses a mug for his tea instead of a posh cup  but it is a bone china one...

Yes. My mother -in-law sometimes goes on about my brother-in- law's crooked pinky. She thinks he was born posh!!!! That makes me laugh.

Hi Padada,

You can see from this thread that you and I are wrestling with the same problem of pain relief versus long term harm. Fortunately, we have the sage advice of Eileen to help us. It doesn't help that many doctors seem to be paranoid about long term effects, but I guess these are more worrying to them than the pain and problems that PMR  can give.

What do you think caused your recent flare? What kind of dose were you on? I'm around 13-15 at the moment and trying to get it right and I hope that by following advice to taper nice and slowly I will avoid a flare. I think I may be one of the third of people that Eileen wrote about who do not respond very well to prednisone, which is why needed high doses in the first place. Even on 30 mg I was pretty stiff and sore for several hours in the morning. For me a big breakthrough was taking my medication several hours before I get up and that was working well until recently when I have been having more problems. I think this may have something to do with a lot of traveling, sitting around a lot on planes and cars, or it's just that the PMR decided to raise its head. 

Hello Hugh,  Yes, we are both wrestling with the pain elief versus long term harm issue.  I would suspect that others are too.  But when a flare occurs, the pain relief suddenly takes priority over the side effects for me.

My first real flare was caused by having to host my husband's family reunion.  That meant a week of getting the house ready for house guests plus all that goes with having the acutal party.  At that time I had tapered from 15 mg. down to 13 mg and was mostly pain free and had less fatigue so I was able to do more (and I overdid).  A common story for PMR people it seems. 

It is hard for me to taper down also.  It took me almost a year just to get down to 13 mg.  And now I am back up in order to stop the flare inflammation.  It can be discouraging.  But I have been reminded of how painful PMR is without prednisone.  I tried a strong prescription pain reliever during the flare and it did nothing to stop the pain. 

Today is my 3rd day since I increased my dose of prednisone and the pain is lessening finally.  It is still discouraging to have a set back like this, even though I know what caused it.  Thank you for sharing your experience and I hope we both can taper with success in the future. The way that I got down to 13 mg was using the Dead Slow Nearly Stop method that Eileen has posted for us.  And a reminder not to be too active during the taper - take it easy and rest as much as possible. 

Hi Padada,

It sounds as if you and I are in similar places and thanks for sharing your eperiences.

I think that the reason I have had to increase my dose is that I overdid it going skiing (which is a lot less noble than you doing your husband's party!) I too was down to 13mg, went up to 15mg for a few days and today up to 17.5mg. I'm not in great pain, but my legs and knees are a lot more sore than they were.

My wife asked me a question that the knowlageable people like Eileen may be able to answer - is the general pattern of PMR to start with the most severe symptoms, needing relatively high doses of prednisone, and then gradually die down until it goes away or only a low maintenance dose is needed, OR does the PMR tend to go up and down, even if the general trend is downwards, presuming one is tapering slowly and not overdoing it?

I guess my wife wants to know the most likely outcome as much as me as it affects both of our lives.

Yes to both I suspect.

When you are first diagnosed it is almost always after some time with symptoms which have usually got worse over that time, although some people wake up one morning and can't move without pain. Of course, that doesn't mean it wasn't creeping up on them, just they hadn't noticed. The cytokines that cause the inflammation are shed in the body every morning, about 4.30am. If you are not taking pred then you would imagine that that level of inflammation may build up over time and that is what causes the increasing symptoms. Certainly there are people who have reduced their pred dose and subsequently developed a flare over a period of a few months - and when the symptoms have progressed from being a bit stiff, through niggles to something rather more obvious eventually their doctor has said "Oh yes, your ESR/CRP have been rising slightly for a while". 

As for the activity of the underlying autoimmune part - I think it probably cycles with periods of more activity with partial or even total remission in between. The most common cause of flares is reducing the dose too fast or too far - that's been acknowledged for a long time. A flare can happen too, one would imagine, if you manage to reduce to a comfortable dose and then the autoimmune bit reactivates, there is more inflammation  and you get symptoms again even without reducing the dose. And of course, you start on a highish dose to clear out all that accrued inflammation and at a dose that SHOULD be enough for most people - then you reduce to find YOUR dose. It is perfectly possible that you miss identifying periods of low activity of the autoimmune disorder on the way down anyway - and then perhaps hit a period of low activity that lets you get to a very low dose, even off pred altogether and then, wallop, back it comes. No-one seems to know - no-one has studied it that I know since there is no way of monitoring the activity of the disease other than the ESR/CRP and they should be low all the time the pred is more than enough to manage the inflammation.

In other autoimmune disorders there are things that are known generally to cause a flare - in lupus for example, being out in the sun is enough for some people to develop a flare! Or overdoing it - I know one young woman who knows that as long as she sticks to the rest/nap she has planned for every afternoon that she will do fine and manage on the given dose of medication. If she gets cocky and thinks she can manage without, she may be OK for a couple of days - but then she will start to see disease activity in the form of swollen joints and so on. Even having that rest but persistently late as when travelling or if the childcare that allows her to have that nap goes AWOL for any reason she can have a flare. She knows very accurately what causes a flare for her so what to avoid. But she's worked hard on this - and has written books and a blog about living with lupus as well as giving lectures.

If we paid as much attention to our bodies as she has to hers maybe we could identify what makes things worse for us. I knew in the early days, even once I was on pred, that if I washed windows or anything that required that sort of action, or did the vacuuming, I would have a flare of pain/stiffness. That is far better now - but vacuuming still has to be kept to a minimum. That's my story and I'm sticking to it. But it DOES get a lot better - I can do far more now than at any point in the past.

I also know how to manage things far better now than I used to and I do consciously avoid certain activities - it is worth paying for a cleaner to do those things. Carrying heavy things is guaranteed to cause trouble. Getting cold doesn't help - it reduces the blood flow even further and I did struggle to ski when it was very chilly - no skiing without sun helped that. Some people notice a difference when they don't eat as many anti-inflammatory foods, others when they eat too much sugar and highly refined carbs, Some do far better by spitting the pred dose, or merely taking it at a different time - expecially people who don't respond quickly to it. Maybe if your mornings are less good but the evenings better, taking part or all of your pred dose before bed might help that - and taking the pred dose at the right time for YOU (not your neighbour or your rheumy) does make a big difference. It can pay to experiment a bit.