PMR

I can't find the original message page I joined asking about pred. and eye pressure problems. (I have closed angle glaucoma)

Am on 13th day of pred, 15mg, eye check was fine so that was a relief but eye chap wants to check every 6 weeks.

I take pred. With breakfast 7-8am, I wake around 5am when pain and stiffness start building up but try to hold out before taking pred. Having taken 15mg The pain and stiffness, sometimes weakness take until about 11.to 12 before I start feeling pain free.

The question is should the dosage mask all pain for 24hours.

I am due first blood test in a weeks time and rheumatologist on last visit said I may need another drug alongside pred. I am so loathed to take any more drugs but just wanted to know if anyone else found this immobility in the mornings?

Thanks for reading

DJ

Hello again DJ

If you type "Closed Angle Glaucoma" into the "Search" box at the top right hand side of this page, a link will pop up headed "reducing steroids/32 replies/discussions". Click on that link and scroll down to find your first post and all our replies.

As to your question "anyone else found this immobility in the morning", sadly the answer from most of us will be a resounding "Yes". From my experience, it was mostly a feeling of intense stiffness upon getting out of bed which took a few hours to subside. Some of us have found several ways of trying to deal with this either by getting up really early and taking the steroids with some light food and then going back to bed for a couple of hours, perhaps warmed by an electric blanket in this cold weather. I used to find a warm shower worked wonders although the relief wasn't long-lasting. A delayed-release pill is being trialled which is taken at around 10pm and then released into the body around 2am which it is hoped will ease this early morning problem.

In answer to your question "should the dosage mask all pain for 24 hours, again sadly not for many of us. Generally, most of us find that we have relief in about 70% of our original pain within hours of taking our first starting dose. There are a lucky few who do become pain-free down through the doses but that wasn't quite my experience - others will be along to share their experiences with you I'm sure.

I don't quite understand why your rheumatologist has already suggested you "might need another drug alongside pred" - you haven't had the chance for steroids to prove themselves yet! However, his proposed plan of keeping you on 15mg for a few weeks and then repeating the blood tests sounds ideal. It also sounds as though you will be well monitored with regards to your eyes. So lots of good news there. I do hope you will soon start to feel much better but do come back with any queries you may have as there is always someone around who has 'been there done it and got the t-shirt'

I too am mystified why your rheumy wants to consider another drug after only 13 days on 15mg! out of interest, what rheumatology department are you under - i.e. what hospital Trust is it? Different rheumys use different times on a dose at the start, some also try a slightly higher dose (20mg) if they don't get the result they want with 15 - but you should be looking at about a 70% improvement in symptoms by now.

No - some people are lucky and get a lot of relief quickly, others take a few weeks. A trial of different doses in Italy found that 75% of patients got that sort of level of response within 1 to 2 months to 12.5mg, a lower dose but the idea was to se eif you could use an even lower dose than is currently suggested. The effect does build up though - the quite severe hip joint pain I had due to bursitis took a few months but it did eventually go altogether. Again, for some people it lasts all day, through to the next morning - the antiinflammatory effect of pred is between 12 and 36 hours, depending on the person. For a long time I was taking my pred as a double dose every second day and had only minimal stiffness by the second evening. Others find splitting the dose as 2/3 in the morning and the other 1/3 later works well so they have less stiffness in the morning. That is sometimes suggested by the doctors.

MrsO has suggested a few ways others have also found successful at making that getting going in the morning a bit easier. You will find that if you can get out of bed and start moving the stiffness should improve quite a bit - it's overcoming that initial inertia that is so difficult!! I found gentle aqua aerobics early in the day made the rest of the day much better - and because I knew that I forced myself to stagger to the car to get to the gym!

She also mentioned the delayed release pill - I take that and find that I sometimes wake about 4.30 with some pain and stiffness but by the time I get up it is gone completely. That is, provided I took it at 10pm, if I am late I do notice it all being delayed a bit! I don't live in the UK though so the doctors have other rules to work by. Judging by my experience it is good - but I suspect there will be a fight in the UK as it is VERY expensive compared with ordinary pred.

You could try having a yoghurt or sandwich by your bed with your pred tablets and take them when you wake at 5am - it is common for inflammatory pain to be more noticeable at night - and then you could cuddle back down under the covers until it is time to get up properly by which time the pred should have begun to work

All the best,

Eileen

Thank you for your replies. The pain is definately not as severe as before taking pred.which is a huge relief but I was questioning if the body could start healing when still fighting pain and stiffness for 4 to 5 hours. before the pred kicks in? I think you are saying the body needs to accumulate the pred and get used to it.

I was rather fearful of taking the pred earlier as worried it may not get me through the afternoon and eveningsn when life returns to normal, kind of!!

Hot showers, swimming and walking I am trying to do everyday as movement is essential or I sieze.

I am also eating masses of sardines and oily fish plus about to start acupuncture. Has anyone found relief from this alternative?

I know I am so lucky at the help and care I am receiving and am grateful for this forum input.

By the way I am female 65 (it started on my birthday!) and live SW London.

Thanks again for your very welcome advice.

DJ

DJ

It isn't simple to answer to your question as to whether " the body can start healing when still fighting pain and stiffness for 4 to 5 hours", mainly because there is no cure for PMR and the steroids are purely controlling the underlying inflammation which is causing the pain, and PMR will go into remission when it wants to and unfortunately not when we want it to. As to how long that "controlling" is going on may vary from person to person and their lifestyle - it is very important to give ourselves plenty of TLC during this time to give the steroids the best chance of doing their job. Many of us have learned the hard way that if we overdo things on a 'good' day, the pain comes back to bite on the next.

It sounds as though you are certainly doing the right things to help - I wholeheartedly believed in my regular intake of oily fish. Of course it didn't cure but I believed it really helped to ease the pain. I haven't tried acupuncture, mainly because my rheumatologist didn't believe it would help, but there again we are all different and what might work for some might not work for others.

PMR has no respect does it arriving on your special birthday. As for living in South West London, you might be interested to know that I run a support group that meets in the Chertsey area - if you are anywhere around that area I'm very familiar with the journey and I think it would take about 45 minutes to reach the venue. I can let you have more details if you are interested.

DJ

It isn't simple to answer to your question as to whether " the body can start healing when still fighting pain and stiffness for 4 to 5 hours", mainly because there is no cure for PMR and the steroids are purely controlling the underlying inflammation which is causing the pain, and PMR will go into remission when it wants to and unfortunately not when we want it to. As to how long that "controlling" is going on may vary from person to person and their lifestyle - it is very important to give ourselves plenty of TLC during this time to give the steroids the best chance of doing their job. Many of us have learned the hard way that if we overdo things on a 'good' day, the pain comes back to bite on the next.

It sounds as though you are certainly doing the right things to help - I wholeheartedly believed in my regular intake of oily fish. Of course it didn't cure but I believed it really helped to ease the pain. I haven't tried acupuncture, mainly because my rheumatologist didn't believe it would help, but there again we are all different and what might work for some might not work for others.

PMR has no respect does it arriving on your special birthday. As for living in South West London, you might be interested to know that I run a support group that meets in the Chertsey area - if you are anywhere around that area I'm very familiar with the journey and I think it would take about 45 minutes to reach the venue. I can let you have more details if you are interested.

DJ

The gremlins attacked when I was typing my last para and part was deleted. I had added after "Chertsey area..." that I spent my childhood and teenage years living in SW London and my son lives in Putney, so if you are anywhere around that area....." etc.

DJ

The gremlins attacked when I was typing my last para and part was deleted. I had added after "Chertsey area..." that I spent my childhood and teenage years living in SW London and my son lives in Putney, so if you are anywhere around that area....." etc.

DJ - as MrsO has said - it isn't simply a case of allowing the body to heal as if from an injury. You have to use the pred to manage the symptoms and wait patiently (or otherwise) for the underlying disease to go into remission. That may be sooner - for some people it can be within a couple of years - or later, I have had symptoms of PMR more or less continuously for about 8 years now I'm afraid. About a quarter are in the 2 year group, about half go into remission in 4 to 6 years. I'm obviously in the remaining quarter!

You can manage the symptoms in various ways - only pred achieves the result you have experienced of most of the pain and stiffness improving. You get a better result if you also manage your lifestyle - not doing things that aggravate the muscle pain and fatigue. People with autoimmune diseases require a lot of sleep and rest. Overdo things and you will know about it the next day or the day after and it takes much longer to recuperate than normal. There are one or two other things that are made worse by the PMR and also result in muscle pain and referred pain (often like sciatica).

It's a case of trial and error often to work out what works best for you - but it is true that being able to move in the mornings makes the rest of the day better! And you can achieve an improvement in that by taking the pred that bit sooner so they have started to work by the time you get up and by using the heat and gentle stretches to get going. Then you need to pace yourself for the rest of the day. The pred takes about a couple of hours from taking them to starting to work, the more inflammation is there to deal with, the longer the dose will take to work, whether it is from the outset of taking pred or each morning. There is no virtue in taking too low a dose and saying "I'll put up with the pain to get off pred sooner" - it doesn't work like that.

As time goes on you will learn to recognise when you are doing too much - and will learn to stop. Listening to your body like that is more productive than saying I will do all I can today - you get more achieved in 2 half days where you aren't exhausted than one whole day where most of the last few hours are affected by pain or fatigue.

Eileen

I feel that your doctor is making the classic mistake of thinking that PMR can be tackled in the same way he would use for other conditions requiring steroids short term. Asthma attacks, chest or respiratory infections and even 'flu (in some cases) would be treated like this, but PMR is not a short term condition and cannot be treated similarly.

I do hope that you are able to get some help from a different doctor. PMR is a long term chronic condition and should be treated as such.

Catie

EileenH and MrsO

I presume Netfret is answering Dottie13 comments as I think my rheumatologist is telling me the right things and has stressed it's minimum 18months when I appeared impatient.

Thank you for your response and I am so surprised when talking to friends at how many people seem to have had or have PMR. Before steroids it was classes as rheumatics and people just had to get on with it. how lucky we are with modern medicine I feel.

Good tip today, sweet potatoes are excellent for immune system so will sprinkle with rosemary and tiny bit of olive oil and pop in oven!!

I live in Barnes so very near Putney and would love to meet up a in a few weeks time when I have given pred.a good time to work.

Thanks for support.

DJ

Hi again DJ

Sweet potatoes - yes, a great food which I substitute for white potatoes most of the time. They're even better than white for diabetics so can therefore lower the risk of steroid-induced diabetes.

Barnes is a lovely area and not so very far away from Chertsey for our meetings (except for last Thursday when it took us 2 hours to get home to Ashford from our son's home in Putney - apparently due to an Oxford Cambridge Varsity match at Twickenham). If you should decide to join us at one of our meetings, the next one is scheduled for 8th January followed by another on 26th February.

Sorry, yes was answering Dottie's post and got rather muddled!

Catie

Catie

At least you can blame the steroids - I haven't got that excuse any more so I guess I'm just left with plain old Anno Domini! :D

Shirleyxx

Good morning to anyone who may pick this up!

I wanted to share my rather silly mistake with you all as am not sure what will happen but am sure someone must have made the same mistake at some stage?

I woke up thinking the clock said 7am and took my 15mg with yogurt only to find on looking closer it was only 1am!

Woke 8am and am completely pain free as though nothing is wrong with me, a most glorious feeling. I even feel like getting into tennis gear and going to play!

Any ideas as to what happens next??

It's now 9.15am and I,m off to church, maybe the Great Almighty has given me a reprieve!!

DJ