Hello all. I am 80 and new here and still trying to come to terms with all that seems to be happening now, I was diagnosed with PMR six weeks ago and started with Pred @ 15mg daily , to reduce 1mg 4 weekly so am now on 14m so far ,so good although the pain in my arms first thing in the morning is not so good . I have been looking at the posts here and they are giving me a positive feel as I can learn so much from you all, ( Im pretty ignorant and naive at the moment ! ) I have been so very lucky as had seen a Rheumatologist ,who actually listened to me ! he said he wants to see me again in another six weeks so he is keeping an eye on me .
Thank you for reading
Seamaid.
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seamaid
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Welcome seamaid and happy to see you have found us and help you on this journey no-one ever wanted to take.
When you can take the time to look at the right hand side of this page and you will see Pinned Posts then Frequently Asked Questions (FAQ's). These posts contain a wealth of information and well worth the read.
Come back at anytime and ask any question, however large or small.
Good morning and welcome to what must be the friendliest and most informative source of information about PMR and related issues.I am a relatively new member,(almost 2 years,) with lots still to learn but if there is one thing that I would love to have known right from the off it would have been about the importance of Prednisolone and the many different effects,plus of course how to deal with them.
One example is that right from the off my G.P. put me on 60mg/day thinking G.C.A. it turned out not to be but I was left on a high dosage for quite some time and this resulted in other issues.(another story,)
One of the major points that I received a lot of help with on this forum was how much my previously active lifestyle would change,this was something that I fought against and lost on numerous occasions. Had I listened,and acted accordingly I would have suffered far less.
So,I wish you all the best but the only advice that I can give you is what you already know and that is to seek help from those on this forum.
Hello and welcome. I don’t think there are many here who arrive on this forum not thinking, “what on Earth is that?”. Luckily now they have put together a comprehensive FAQ section on the right of the screen which is worth reading in a comfy chair with a cuppa. Any questions, do ask no matter how silly they seem. Normally people start with a dose between 15 and 20mg and stay on that for 4-6 weeks. If you are getting morning pain, it might be worth asking about sticking on the 15mg until it gets under control again or even going up higher, rather than continuing reducing. The Pred isn’t curing it, it is just there as a support against the inflammation caused by your autoimmune activity. This will die down in time so the reductions are tailored to reduce ideally with the decrease in inflammation which can be trial and error. What one doesn’t want is a repeated overshoot because of reducing too fast and having to go way back up again. So generally one doesn’t reduce if pain is still evident. Some docs listen to the patient and some like to get them down to low doses as soon as possible which is ok unless the patient’s body isn’t ready. The guidelines they follow are a start and need to be tailored and this can be interpreted differently by different docs. As a patient it is important you tell them how you feel .
Hi and welcome - enjoy exploring what we have to offer and never feel it is a silly question that is baffling you. No silly questions, only silly answers ....
Welcome, it's all been said. Snazzy is probably correct, so question the reduction just now. Happy reading and learning. None of us wanted this but it does improve.
Pleased to meet you, seamaid. I bet one thing you didn't realise you'd have when you embarked on your PMR journey is the mine of information you have received and will continue to receive. There is something for everyone on this forum and support is always available at the end of every question. "You'll never walk alone"! We are very fortunate. I wish you well.
I echo everybody's welcome to the forum and agree that maybe you need to take a little bit more pred for the time being. I also recommend obtaining a copy of Kate Gilbert's very useful and comprehensive handbook ''Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide'' ( 2nd edition)
Hi and welcome to our little gang..... all 14,426 of us!😄 You're going to feel a bit overwhelmed and bewildered, both now and probably at various points ahead too, but as I always say..."There are many worse things we could have been diagnosed with!"
You'll find trustworthy answers and reliable advice here so you'll never be short of support and when you're feeling a bit anxious or stressed there's always someone who can help to reassure you.
Our condition isn't without it's challenges but I've discovered that there's not as much to be scared of as you think... particularly if you educate yourself as much as possible about PMR and the meds involved. So, don't overdo the physical activity, rest when you need to and never rush your steroid tapers.....and hopefully you won't encounter any issues you can't resolve or at least 'manage' more effectively.
."There are many worse things we could have been diagnosed with!" I would have contested that 3 months ago Kendrew but agree now. Life is manageable and improving daily.
Welcome too our lovely group, the only thing I’d add is to give yourself time to absorb and digest all this. We’ve all felt naive and a bit scared starting out with pmr, I certainly did. Sounds as if you’ve got a good rheumy too, all good. Best wishes.
Welcome seamaid This lovely group changed me when I was first diagnosed. They're all lovely. David
This is the most informative, uplifting forum you could have found. I’m here reading and learning most days. You’re going to find it so very helpful. Good luck x
In the first few months I always took my pred around 4am - this was in the winter so was very grateful that my OH was ok with my warming my cold feet against him when I got back to bed!
After three and a half years I still take mine at 4am though I don’t get out of bed. It’s set up on the bedside table - alarm, banana, pred in container and bottle of water. More than once I have turned off the alarm, eaten the banana, dropped back off to sleep and found the tablets sitting there later.
I have a 4pm alarm which is next to the dosette box. I still often switch the alarm off and forget to take the pill!!!! Can't even say I was half asleep
Quickie here Ladies (Arflane, Megsy, PMRpro). Am curious why 4am when 2am seems to be generally mooted because it gets in before the night inflamms cycle. Do you take the afternoon dose at 4pm?? Or are you on enteric coated??
I am on plain tablets, no afternoon dose and have just always taken them at 4am. I find there is still enough time for the pred to work by the time I have risen. Fortunately I’m retired and don’t have to get up early for work. If I have. to get up earlier to go to the loo I take it then and turn off the alarm.
No - the 4pm dose for me is an antiarrythmic drug, not the pred. I'm actually on Lodotra/Rayos, a delayed release form of prednisone that is take within 3 hours of a meal or with food at 10pm and then releases at 2pm so you don't need to wake up. It was designed off the back of the research that established the 2am timing. It is 2am for prednisone as that takes longer to reach the effective peak as it must be processed by the liver and that delays things. Prednisolone would be better at 3am as it is immediately active once it is in the bloodstream.
But some people just can't cope with waking at those times so take it as early as they can after the 4-4,30am release of the inflammatory substances which isn't a fixed in stone time, it does vary a bit from person to person. The antiinflammatory effect of pred also lasts from 12 to 36 hours depending on the person - if you are at the 24+ hour end then the pred from yesterday will still be working to some extent when the next dose is due unlike people at the 12 hour end who may well have symptoms returning during the day and may benefit from splitting the dose. And for some people taking the pred early, a couple of hours before getting up for the day, even as late as 6am, is plenty of time to be able to get up without significant symptoms as Meggsy says.
Thank you for that information. Very helpful. I occasionally forget my 2pm dose for over 4 hours and certainly for one or two without feeling any ill effects. Does this mean I am a 16 hour girl?? Sometimes I forget to set my alarm in the night and again the dose is delayed. What are your thoughts on this?? I am on 20 struggling to get down to 19 mgs. I think currently my tapering is going to be a permanent 2 days 19md, 5 days 20mg! And no visit to a rheumatologist for three months... I read about everyone struggling with under 10 and wish I was there...
If you are really struggling to reduce at that level it may well beg the question as to whether this is really PMR but something else with a polymyalgic presentation. Are you still trying to do too much?
Thank you for your comment PMRpro and well recalled! It doesn't feel like it as I don't experience the overwhelming tiredness some contributors talk about on the forum. I do rest when I feel the need and have of course given up work since the end of January last year. My doctor wonders the same thing (as indeed do I) but will take 3 months to see a rheumatologist. So won't know till then.
Hi, Welcome, stick with this site, everyone is in the same boat and we are all going through this, there are so many people who can help you here with a wide range of knowledge who can help with any little thing you have a problem with.
Hi , thanks for posting. I’m 69 had PMR for 4 years think it’s on its way out as down to 2 mg and feeling good. Just keeping taking the tablets and try to enjoy life with positive thinking! It’s a shock at first but you will come to terms with it - this forum has helped me through so much - take care and look after yourself dear
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This lovely group changed me when I was first diagnosed. They're all lovely. David 
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