Pred has worked for me except a dull neck ache for most of the day which I can cope with and get on with life and stiffness in hips, neck and shoulders first thing in the morning which is relieved by a long, warm shower and Pred kicks in later in morning.
I expect my GP will suggest reducing but with the benefit of yur experiences - woud you advise to reduce to 12.5mg or stay on 15mg for another few weeks as it is working for me? Or reduce to 13mg? Other suggestions welcome. Friends say just do what the doctor says but I feel with PMR ist is good to know what works for others.
Thanks
Cassie
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cassie1208
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The Bristol Group recommend six weeks at 15mg, six weeks at 12.5mg then one year at 10mg. If you are OK at 15mg after six weeks there is no reason why you should not try to reduce. My rheumy wanted me to reduce after three weeks and it was a disaster.
I never really got rid of the pain around my neck and a really warm shower is fantastic.
I was at 15 for four or five weeks. I don't think you should start to taper until more of your aches have gone, and when you do, be very careful if you notice an increase in the pain. I suspect 2.5 might be too big a drop if you continue to have slight discomfort.
I started in January with 15 mg Pred and my doctor after three weeks told me to reduce to 10mg. I said I thought that was quite a large drop following what I had read on this forum. The doctor then said try 12.5mg but you can't believe what you read on the Internet. I tried 12.5, which resulted in a flare and had to go back to 15mg for another few weeks. It is hard enough as we all know, in the early stages, to deal with this life changing condition, without the right support.
I then, following this forums advice, reduced slowly to 13.5, 13, 12.5 etc and have had no more flares.
I rather lost confidence in my doctor as the doctor has never given me any advice or any tests whatsoever, merely handed out the Pred in the various quantities at my request. Maybe my suggestion annoyed the doctor.
A locum doctor I saw in August, when mine was on holiday, arranged for all the blood tests to be done, without me asking and also put me on calcium (Adcal).
I bit the bullet recently and asked the practice manager if there was another doctor in the practice with more 'in depth' knowledge of PMR as it is a long term condition but the reply I got was 'they all treat the condition with good results', but I have the right to change my doctor.
I have just changed my doctor but have still to discover whether the new one will be any better. I live in hope!
I sincerely hope that you wIll be able to discuss the various issues with your doctor. Certainly the help and advice on this forum is from people who have experienced the condition. I wish you all the best.
Thanks- early days but I feel my doctor is good - she put me on Adcal from day 1.
Useful suggestion re cutting down in small amounts.
I was wondering if asked your doctorfor a selection of 1mg, 2,5, 5mg so that you could listen to your body as to what you needed.
As you know appointments are hard to get especially if you want a specific GP so if I cut to 12.5, then needed 1mg that would mean going back to GP again.
I have had 5, 2.5 and 1 mg Pred for some time. I have been able to request them online to my surgery as required. I purchased a pill cutter but haven't had to use it yet. I am now on 9.5 per day - ( 5, 2.5 and two 1 mg.) perhaps just sending a letter to your GP would be enough to get a prescription for the lower doses. It's worth a try rather than waiting for an appointment. My surgery only supplies enough medicines for a month but I have slightly more of the Pred to suit my reduction requirements.
Now I am below 10 mg I am reducing by only 0.5 mg each time.
Thanks for you advice - good idea about a letter. This will be the first time I will see my GP after diagnosis 3 weeks ago. It seems strange to family that I should request what I reduce to and different mgs of pills as it is traditional for us to do what the GP says. but I agree with you that we have to listen to our own bodies and take control somewhat as to what we need. So it will be good to go in there next week with suggestions for the few weeks ahead.
I think you are doing really well and I hope I do the same.
My lady GP seemed to know a lot so we will see how it progresses.
This website is so, so good! What would I do without all your help in these early stages.
Still have neck ache but positive today and going swimming for just half an hour.
Good luck with your reducing - I expect I will be in touch again after next week when hopefully I will have a selection of mgs- I dont fancy that pill cutter!
I have responded before and thanks for all your advice.
Started on Pred 15 just over 4 weeks ago. Pain under control except when I dont have a lie down in the afternoon when my neck has a dull ache which is relieved by half an hour lying flat.
Thinking of reducing to 13mg next week or 12.5mg - which do you think is best? Maybe for 5 weeks? Then reduce again?
The thing I am having to get used to with PMR is that I dont yet realise when I am overdoing things especially when visiting family and being busy, then after I am exhausted for a couple of days - I really will have to learn to pace myself as you have all advised.
I can't get over how my frozen shoulder pain has gone or as people here have said - was it the early symptoms of PMR? The shoulder consultant didnt mention it and just gave injections. physio and pumping saline water in to the shoulder to relieve it but nothing worked.
Cassie, only you can say what is best for you. The better you feel, the safer it will be to reduce. If you still have residual aches and pains, like most of us do, I would advise reducing rather more slowly than you would like. (I have had to do that.) You'll be better off as you will avoid a possible flare that could lead to having to take more pred in the long run. I can't speak for others but when I've asked similar questions the general advice has been - slower is better, smaller steps are more likely to be successful. It is tough, though. Good luck to you, whatever you decide, and please let us know how you get on.
Cassie, I agree with what HeronNS has said. I found out the hard way that reducing from 15 to 12.5 was too much for me, so then tried 13.5 using the forums slow method. I was actually 10 weeks at 15mg but my husband was poorly and I had more to do. The recommended reduction is no more than 10 % and that would be 13.5 from 15. It is very hard at the beginning to get your mind around to coping with your new lifestyle but hopefully it will get easier for you.
I have found that when I am reducing I look at my diary for the week ahead and decide which days are busy and take the higher dose and lower on the quieter days.
I have had to slow down the reducing pattern at times if my body reacts or I have a busy schedule - like looking after my grandsons. The main thing is to listen to your body as we are all different but certainly taking it slowly is the only way.
I have now used the pill cutter with great success on the 1 mg tablet. I leave the unused half tablet in the cutter so I don't lose it. Don't cut the coated tablets.
Thanks for your advice and it will be a good idea for me to choose a quieter time to reduce- last weekend I was so tired when I got back after looking after my grandchildren but I didnt realies how hectic it was at the time only when I arrived back home did it hit me -yes it is hard when you are used to helping out to recognise that I cant do anywhere as near what I did before, especially when people say that I look well.
Anywhere after 1 month on pred I feel the shock of it all is settling down now and I am sleeping better at night, I am managing to swim 3 times a week but ever so slowly and for only half an hour at a time. So I remain positive as I dont want to be defined by my condition - thats where this forum comes in as people understand about everything PMR.
I will have to get a pill cutter and a good tip to leave the half in there.
The pill cutter I got was from Superdrug and called ' Pillmate Pill Cutter' . Boots didn't have one that day but this one works well. I do Aqua aerobics and yesterday tried Zumba Gold. I managed the half hour session but ' rested' afterwards having coffee with my friends. Later I caught up with paperwork and doing easier things. I certainly slept well last night.
You are doing really well by swimming three times a week, I am not sure if I could have done it in the first few weeks but then I was nursing my husband.
My family have at last come to terms with the fact that I can't do nearly as much as I used to do and my grandsons aged between 8 and 11 are quite happy to play board games. They like to beat me. If I take them out on my own, I sometimes get them to run around the field to let off steam, while I supervise. They now know they will get a treat later if they are good. Grandmas can do that!!
Good luck and hope things go smoothly for you. Let us know how it is going.
Thank you I will have a look today in Boots-before PMR struck I was swimming 5 times a week - I feel I have to carry on as it will help with the weight too and I have a chat too - its ok in the pool its just thinking about it before!
I have explained to family about PMR but there is so much going on when we meet - I will have to choose a quieter time! Torn between going in to details and not wanting to make a fuss!
My grandchildren are very good and they did have a treat with magazines - used to call them comics and they are expensive and they only want the free gifts! Still as you say thats what we are there for and its great.
I was advised by my Rheumy to follow the guidelines from the Royal College of Physicians (other organisations are available ), see: rcplondon.ac.uk/guidelines-... which I have done to the letter. My Rheumy said to contact me if I had any problems and the GP hasn't been in touch for 8 months, but I have got everything else I need from this forum, which is terrific. You cannot ignore your GP, who sounds as though he is, at least, engaged. However, I suggest you check the set of guidelines from a professional body like RCP and address your queries either here or to your GP. I was in the same position as you and tapered down to 6mg which is where the mini-flare up started. Quick as a flash - and with help from Dorsetlady and others - I went back up to 8mg and am now stabilising for a while before reducing by .5mg every 4-6 weeks. What's the hurry after all? Good luck and my (non-professional) advice is not to rush it, like I did.
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