The comparitive experiences have been an eye opener. None of this is gleened at the doctors office. No suggestion of pamphlets, no helpful printouts regarding support in New Zealand. Nor could i visualise what was going on in my system. Then low mood in the mornings as i began to taper and up to 12 hour bad times starting 2:30 am.
Mainly my focus is whether i can reduce pain. It sounds tricky at best finding the right level of prednisone. We were on the right track then the flare. I am wondering if we look at the pain cycle if there is a time of day optimum for taking Pred. to reduce the effects of inflamation.
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Sunny465
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Welcome. Actually there isn't a lot of information in the UK either, what knowledge most of us have is either from this forum, or the charity PMRGCAuk web site or various other sites after googling (other search engines are available). It's a little known or talked about condition. Depending on whether you have GCA or PMR you can get information of the treatment from British Rheumatology site or patient.uk site has information leaflets aimed at patients and doctors. A little while spent searching will give you plenty of reading.
We on here can give you help on your day to day problems, there is a wealth of info from many patients.
Your initial dose should be big enough yo have reduced most of your pain, not 100% gone, but enough to allow you to carry on a fairly normal life. If it doesn't then maybe you need to speak to whoever diagnosed it.
The idea is then to reduce slowly until you find the level that controls the inflammation. The PMR or GCA is not cured by Pred, but the inflammation caused by either of those illness can be controlled.
Recommended time to take Pred is early morning, with or after food. However the cytokines that trigger the inflammation are produced around 4am, so some people take their Pred around 2am so that by the time it is fully in their system (about an hour or two) it ready to fight the inflammation.
There are some members from NZ on here, so hopefully they will respond.
As a matter of interest where do you live, interested because my daughter lives on the South Island, near Methven on Canterbury Plains.
Please come back with more questions, comments etc, and good luck.
I was very interested to read your response, in particular with regard to some people taking their prednisolone at around 2am each day to help control the cytokines that are released at around 4am each day. I would like to try this method as my current level of Prednisolone is 9mg and, to be honest, is not alleviating my symptoms as well as on previous higher doses and mornings are a struggle, so this method may help me. As Prednisolone has to be taken with or after food, I was wondering what is the least amount that I could get away with and any suggestions as to what this could be. Your help, as always, is much appreciated.
You can probably manage with just a glass of milk or a yoghurt if you don't have gastric problems.
But if your dose of 9mg isn't working as well - it is far more likely that you have reduced just slightly too low. For now that is - it doesn't mean you won't get lower later. But you need what you need - there is no getting away from that!
Do you really want to wake in the middle of the night? Or are you one of these lucky people who can go straight back to sleep? What about trying about 2/3 in the morning and the rest later in the day Then the effect may carry over to the next morning without upsetting your sleep.
Thank you so much for your response and your advice, I really appreciate it (this forum is amazing, as are the people who participate)
I am one of those lucky people who can get up in the middle of the night, then go straight back to sleep, but I am going to first try your suggestion to take 2/3 Prednisolone in the morning and the rest after lunch to see if it helps. I was initially put on 40mg Prednisolone for GCA and PMR in July 2015, following the Rheumotologist taper programme down to 9mg by March 2016, then had a relapse and was really unwell for 6 weeks before going back to 20mg. Have reduced by 10% each month and all OK until hitting 9mg where I know it gets tricky. I am desperate to stick with the tapering programme as my Rheumatologist wants to add leflunomide, which I am really reluctant to take having read some of the awful experiences of some patients and it's equally awful side effects.. nausea, breathlessness and hair loss, plus twice monthly blood tests to check for liver damage as if there isn't enough to worry about 🤕
Unless your rheumy is a certain gentleman in Chertsey I would resist the leflunomide yet. It isn't 2 years since you had GCA and to be down to below 10mg by now is actually pretty good going. I hope he isn't one of these types that believe GCA should go away in under 2 years. It very often doesn't. As myriad people on this forum will attest, DL included. I really don't know where they get the idea from!
No, my Rheumatologist isn't the gentleman in Chertsey and thank you for your advice. I am going to stick with the Prednisolone for now and, as you say, it isn't 2 years yet.
PMRPro gas got in before me, with almost identical response, so I won't repeat.
I will add that neither of the two suggestions worked for me, but as I was lower in dose I'm now convinced it was adrenals being particularly lazy and not GCA pains.
If 9mg is not controlling things at the moment, then maybe you are at the point that is just below or boarding on your optimum level for the time being.
It's not an exact science, as we know everyone is different, and so we all have to do a bit of experimenting with our doses to get the best for US - but as PMRpro says "you need what you need"
Thank you so much for your response. I am going to try the options that PMR Pro has suggested to see if it works for me. Knowing from this forum how some people really struggle with these chronic and unpredictable conditions, it is hard to know whether your own personal journey is the norm, or not, and that you just have to stick with it and ride out the storm. Thank goodness for this truly amazing forum.
I live in Palmerston North, in the lower North Island. From memory you can see the Southern Alps from Methven where your daughter lives. I was initially looking for support online in NZ. Then I found this site. Your information is gratefully received.
Last week as the weather has been warm, i had a sense of well being on a track with slopes and steps. I was careful day one and two. My strength improved I thought. But with an able bodied person it is easy to forget not push our luck on pace and duration. It is easy to forget when we are talking and having a good time. When it appears I can warm up and not feel stiff and sore in the afternoons, I want to continue. Five days of this and oh my gosh.
One doctor said do whatever exercises you like. You can't do any damage. Another said exercise is good. He mentioned there is a tramping club that goes for 3 to 4 hours. I would dearly love to but at this stage I need to get a life first. I thought these were cruel comments that suggest mind over matter. Or plain lack of insight into the nature of these pain cycles, Pred. levels and whatever else that is variable and suitable for each person.
Re: Mobility. Too much too soon or the all or nothing approach is not good for me. Back to my 'baby steps' I'm guessing.
I have noticed some online descriptions of PMR pain and stiffness focus on the neck, shoulders, hip girdle areas.
Can pain behind the knees also be a feature of PMR? I suffer as am very stiff in the mornings. Wobbly legs after i sit even short periods. Knees and hips have started to click again. Difficulty standing. All this went away in the first two weeks when starting Pred. in November 2016. And then the other issues trying to get the Pred. right at breakfast since tapering began too fast too soon in January.
Yes, this might be the case that pred. levels still too low up from 7mgs for 30 days now on 10mgs for last six days. I believe the cytokines could give me a break if i could apply the circadian model. Take the pred. at 2am I am willing to try.
Modified Release Pred. could be an option. The GPs I have spoken with aren't responding either way for PMR treatment in the night.
Before i was diagnosed with full on symptoms I have thought there was a pattern re pain: time of day, poor sleeps, not to sit to long nor on feet too long unless moving, and not to be in bed too long. Mobilising in the night has helped.
I will have a look at the book by Kate Gilbert - A survivors guide to GCA and PMR. And then you mentioned The Spoons Theory on the web re life style.
Yes beautiful view of Southern Alps from daughter's garden, in fact Methven is centre for skiing at Mt Hutt.
GENTLE exercise is good, like Tai Chi, Pilates, Yoga, and Nordic Walking is good for wobbly legs! But not too much, which I think your tramping club would be at the moment. An hour maybe, but certainly not 3 or 4! The main problem is that your muscles do not recover as well as they did pre-PMR, pre-Pred. If you think about it, if your blood vessels are blocked in anyway, such as the enlarged cells in the vessel walls caused by PMR or GCA (clue in the name Giant Cell Arteritis) then the blood, oxygen, energy is not getting to your muscles as it should. Unfortunately Pred can also cause muscle weakness.
I had GCA not PMR, so my hips and knees were not affected, but I think others have mentioned pain behind knees. When you start Pred it takes away almost all pain initially, unfortunately as you reduce 'normal' aches and pains of life return!
If you have a lot of pain early mornings, you could try the 2am trick, it all depends on if you can be woken at that time by alarm, and then get back to sleep without problem. Another option is to split your dose, say 2 thirds morning,1 third bedtime, then the evening dose is enough to get you started in the morning. Sometimes it's a matter of trial and error and finding what's best for you.
A split dose 2 thirds at breakfast/ 1third pm bed time is worth a try. Re blood vessels: it makes sense to me. Restricted flow/exchange and muscles caught out.
PMR or GCA is not like most illnesses, take a course of tablets for a few weeks or months and it's cured. There is no cure, but the inflammation caused by the underlying illness can be controlled.
Lots of us are never sure what caused the underlying conditions of GCA and PMR, but having them means that your immune system is not working properly and allows certain cells within your blood vessels to grow too much - hence the Giant Cell in GCA. That causes inflammation in your blood vessels and means that the blood and oxygen does not circulate around your body as well as it should, so you get aches, pains, stiff muscles and fatigue.
The only thing that control that inflammation is Pred, it does not cure the problem, but it keeps it under control. Usually PMR and GCA go into remission, but that can take a number of years, around 4 seems to be the average, sometimes a lot longer. The initial high dose takes control of things, and then you have to taper slowly enough to keep the inflammation under control, if you do it too quickly you may go below the level of Pred that works.
However, whilst we are reducing Pred (because you don't want to take more than necessary) you have to ensure you are taking enough.
The usual plan is to reduce every month but, and it's a big but, what looks achievable on paper, in real life it's very often not! As I said most people have started at a bigger dose, and therefore the inflammation at that level is well under control, the art then is to reduce SLOWLY provided you have no return of symptoms. Some doctors don't seem to get the 'slowly' bit! If you reduce too quickly, whether that time-wise or by dose you are likely to go past the level of Pred that can control your inflammation.
If you remember the mantra-do not reduce more than 10% of your existing dose - it will stand you in good stead. So at 50mg that would be 5mg, at 20mg -2mg or 2.5mg. Obviously once you get below 10mg, that will be part of a 1mg tablet, so most people find that cutting them in half (so long as they are uncoated) gives approx 0.5mg
Try and read as much as you can about your illness, the uk charity PMRGCAuk.co.uk has lots of information. You can find a link if you go to the home page of this site and scroll down, it's on the right hand side.
There is a book by Kate Gilbert - A survivors guide to GCA and PMR on Amazon - either hard or e copy, just type in GCA or PMR. The North East branch of PMRGCA also has lots of info, link from main charity webpage.
You do have to do your bit as well though, just because you feel better, you are not back to normal, you still have the underlying disease there. You have to learn to pace yourself, that means resting. Your muscles are not as resilient as pre PMR, so when you exercise - gentle, Pilates, yoga, Tai Chi all good, no strenuous workouts! You need to let your muscle recover, and that takes longer.
Take more time planning, don't try and do half a dozen jobs all at once, or all on one day! Take any offers of help, even though it may go against the grain at first. Life can return to NEARLY normal, just in a slight slower lane maybe.
Look up 'Spoons Theory on web, it's not about PMR but it will give you an insight into how to adjust your lifestyle.
I would also like to complement Dorset Lady for this thoughtful summary. There isn't a day when I don't remember the chronic pain I experienced at the onset of this autoimmune disease. Thankfully the pain is well under control, but I worry about its return.
Your pain should be kept under control once you're on the Pred, but as always that relies on you not trying, or being advised to, reduce too quickly. Plus you doing your bit, and not trying to do too much just because you feel better, and I think that's very difficult at times. When you feel good it's easy to say I'll just doing another 10mins of gardening, walking or whatever, and sometimes that 10mins is just too much.
You can never say the pain won't return, but this time you'll know what it is, and more importantly how to cope with it.
Appreciate the clear revision DorsetLady thank you, as ever.🌹
Hello Sunny465 & Welcome 💐
I think DorsetLady has given you some wonderful advice & information. Thank You DL 🌺
You don't say what dose of Prednisolone you are on currently or what time of the day you are taking it? The standard recommended plan is to take the full dose in a morning before 9am but for some people that doesn't work so they try splitting their dose.
Let us know where you are upto & what dose you take.
Am also from New Zealand & if it wasn't for the people on this site I would have thought I was insane. Have had the run around from doctors all the 3 years & 4 months of PMR & am now only dealing with the nurse who renews my pred. prescriptions. NOTHING else has been offered or talked about so I understand where you are coming from. No support groups, although I see there is one for ME/CFS sufferers & Arthritis NZ has something on their website, however, it is NOT Arthritis. Doh!!! Can't work that one out.
Ask all your questions here, as much research & experience has been gained by others.
It is because historically it was though to be an arthritis/rheumatological disorder - that is the sort of symptoms it produces. So patients went to that sort of doctor. It is relatively recently that it has been decided it is probably a vasculitis like GCA, it isn't just coincidence they overlap. It is also rheumatologists who tend to look after autoimmune disorders so that hasn't changed it much either. However, there are now vasculitis specialists in centres of excellence and some GCA patients do manage to be seen at one. THEN, I have heard, it is a very different kettle of fish!
Yes, when I first started to read up in November it was very much under the umbrella of Arthritis Foundation NZ. - as are all autoimmune disorders at the moment.
So if the overlapping of info. isn't being shared then difficult to to clarify. If Im seen as presenting as one thing on line and in theory the PMR box, then who will bother to connect dots. Or is it a case of updating the info that points to treating a form of vasculitis.
Yes, trying to nut it out Rosajur. yea same if it weren't for this site. Insane alright. Several years ago in our local community newspaper someone listed an interest in creating a PMR support group. I thought WHAT IS THAT? ??
I wonder if the Citizens Advice Bureau would have a group support contact. Maybe it is my turn to put the idea out there locally.
There are only charities and support groups in the UK because someone decided there was a need. Nothing comes from nothing...
About 10+ years ago (or so) there was one support group in the east of England and a charity in Scotland. The website now called patient.info had a forum for patients and that was it. Five women "met" on patient.info and one of them had already pulled her hair out looking for info about her rare disease GCA and, because she knew how to go about it, was thinking of setting up something so others wouldn't have the same problems she had had. They got together and set up the northeast of England PMRGCA charity - because that was where this and a couple of the other ladies lived. The Scottish charity was a great help at the time. Sometime later the national charity, based in London, was also formed. The northeast charity already had a PMRGCA forum and then this one was set up by the national group. There is also a separate charity in the northwest of England
The northeast charity has produced a DVD and a booklet about PMR and GCA and the effects they have on us and send out a comprehensive members pack. But they can also be bought by anyone in the world who wants them. They have also supported research in various ways - and all of them have lobbied for better treatment pathways.
You'll find links to all the charities in this post on the patient.info site:
It does require a lot of commitment to do all this and there was an attempt to get a forum going in the USA/Canada but there probably weren't enough people to get past the initial tipping point where it takes off. The NE forum had serious server problems - and has become a shadow of its former self but it is growing again. This one and the patient.info forum are extremely active with members from all over the world.
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