Varying Prednisolone dosages

Hello everyone! I am recently diagnosed with PMR (December 2012) and am new to this site. My PMR is being managed by my GP who is an absolute gem. I started at 20mg per day Prednisolone and currently am on 10mg per day. My GP phones me at pre-arranged three weekly intervals to assess how I am (general wellbeing, pain, side effects etc). He then decides on the reduction in dosage. I have had a couple of blips along the way (fatigue etc) but generally, I have had no side effects from the Prednisolone and am pain free. I am also taking Alendronic Acid 70mg Tablets and Calcium + D3 chewable tablets to prevent osteoporosis. He has said, on no account, decrease or increase the dosage myself without prior speaking to him. At any time, I can call the surgery, leave a message for my GP and he rings me within the hour. I have never had to do that but it is wonderful to have that re-assurance. A couple of friends have said I should ask to be referred to a Rheumatologist but my overall feeling is - if it ain't broke, don't fix it! I have a GP who is managing my PMR very well and I can call him at any time. If I was referred to a Rheumatolist, I certainly wouldn't have that ready back-up - I would have to wait for the next hospital appointment. My main reason for this blog is the fact that on reading the various blogs, many of you seem to self adjust your Prednisolone dosages which concerns me slightly. Especially as my GP has said, because it is such a powerful drug, not to change dosage without prior consultation. This PMR hit me "out of the blue". I had not been unwell in any way, no stress (we are recently retired and enjoying the freedom that that brings) so I found this PMR thing quite bizarre and difficult to take on board. Fortunately, it has only effected my shoulders and arms. Any comments re the varying dosage would be most helpful.

27 Replies

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  • Hi pjsmum

    I went down with PMR last August and was on 60mg's/day and gradually over the last 6 months reduced to 10mg's/day, when you gat down to this level it is important to have a supply of 1 mg tablets so that in the event of a flare up you can keep on top of it with a modest dose.

    It works for me - all the best!

  • Thank you so much for your reply which I found most helpful.

  • Hi pjsmum, welcome to the site! If you would like a PMRGCAuk info pack, please send an email to info@pmrgcauk.com. It sounds as though you are doing really well and if you are happy with the treatment you are getting from your GP, and it seems to be doing the trick, then no need to press for a referral. One reason we are in favour of referrals is that most rheumies only see the complicated cases and so most research is only done on the complicated cases and so we have very little data on the more 'typical' cases. But that is changing now, with research taking place in primary care, and it is the case that lots of people get through PMR in a couple of years without too many problems. So hopefully, you'll be one of those lucky ones! Those of us who are tweaking the pred dose from time to time tend to be the ones who have been living with this condition for three years or more. Chances are this won't happen to you!

  • Thank you so much for your comments. I found them to be very helpful., I have already registered and received the PMRGCAuk info pack. This seems to be a little known and little researched subject so any info from respected professionals is invaluable. Hopefully I will be over this in a couple of years as, if I'm honest, that is what I am having difficulty coming to terms with, having enjoyed a healthy life to date. Kind regards

  • Hello pjsmum

    Your GP seems to know what he's doing, I wish they were all like that.Where's his surgery??

    My Dr leaves me to manage my own steroid dose, probably because I have been on them for 14 years, I do attend the Rheumatology dept. but only once a year. I have GCA and PMR

    The general rule is to go down very slowly epecially when you reach 10 mgs. even reducing by only 1mg per month. However we all differ in our body's reactions in lowering the drug. So go with your Dr. he sounds great.

    Pat

  • Thanks Pat. Much appreciate your comments. I live in Middlesex. Before becoming a GP, my doctor's interest and subject was Rheumatology so I feel well looked after. He is a lovely man and I feel very confident in his management of my PMR. Kind regards

  • Hello pjsmum

    You are so lucky in having such a gem of a GP - wish they were all like that in Middlesex! Hang on to him! It sounds as though you are doing remarkably well in managing PMR under his care, and to be "pain-free" down through the doses is a real bonus. I wish you continued success on this PMR journey.

  • Many thanks for your kind comments.

  • Your experience seems to be similar to mine! I was diagnosed on Xmas eve; also had pains in just the shoulders and arms (it was really bad at times stopping me moving in bed and also getting dressed/doing hair etc was terribly difficult)

    My Dr is also very good and is helping me to manage the steroid reduction - althogh more slowly than yours ( I started on 20mg and am now on 11mg). I am awaiting results of a bone scan to see if I need supplements - did you have a scan or is your Dr prescribing them as a precaution? I did have a bone scan 17yrs ago so they have a bench mark to go by (at that time my bones were strong and "good for my age" I will be interested in the results!

    Has anyone else any "Bone/steroid" comments or experiences?

  • Thank you for your comments which I found very helpful. I have only ever been diagnosed and treated via my GP. I had one blood test at the onset of PMR (Dec 2012) which came back as "normal" with no indication of inflammation! But I had the classic symptoms of PMR - sudden onset of severe pain in shoulders & arms, being barely able to move. Having prescribed the initial dose of 20mg Prednisolone, the pain virtually disappeared within 72 hours. My GP prescribed the Alendronic Acid and Calcium as a precaution because steroids can bring on osteoporosis. I am desperately hoping I am going to be one of the lucky ones and get shot of this awful illness within the average two years. At present, I am pain free and without any side effects so my life is more or less back on course. Best wishes to you.

  • I have GCA and once diagnosed was given a bone scan. My bones were ok, but as a precaution I was prescribed Adcal D3 and I take two capsules in the morning and two in the evening. I also take Alendronic Acid 70mgs. once a week. I also take Omeprazol to protect my stomach from the side effects of Prednisolone. I was diagnosed in November 2010 and will probably have another bone scan again, I would imagine.

    My consultant Rheumatologist decides on the reduction rate for Prednisolone and I have managed to get down to 1mg. a day, but do take 15 mgs. Methotrexate weekly.

    In my GP practice some of the GPs I have met have not heard of GCA!!!! Quite worrying.

    Good wishes

    Tomasina

  • Hi pjsmum, I agree with all you say and I am fortunate enough to have an equally caring and conscientious gp. Not all doctors are heartless and it would seem that many patients think they know better than them. Maybe there lies the problem. My GP and I discuss my treatment, of other problems as well as PMR, together. It's a case of working together in my opinion. I am glad you are doing so well. Keep up the good work!

  • Thank you so much for your reply. Much appreciated.

  • Hi PJsmum

    You should not start AA unless you have had a DEXA scan which shows that there is a need for it. Many GP's prescribe this powerful drug which can have horrific side effects when it is not necessary. You should also get your Vit D levels checked I reduce Pred by 1/2 mg at a time and do not reduce unless I feel 100%, I have self monitored my condition since day 1 as my GP is useless, he started me on 40mg even though I had no symptoms of GCA. I read as much as I could and discovered the usual starting dose is 15mg, so I reduced over the next 2 weeks to 15mg and went back and told him. Since then I found out about Vit D levels being checked ,Dexa scans and how to taper successfully. Kavidacat, it would appear that I do know more than my GP, as he told me I am only the second patient he has seen in over 20 years with PMR, hence he overdosed me !

  • very worrying... a good job you are able to research yourself and make sense of it all

    A pro active approach and attitude is what we all need

    I am fortunate in that my Dr is receptive and willing to discuss issues with me. I find it best to explain worries clearly - I often take in a list of questions and queries to make sure I cover all I need to in the allocated time! I know I would miss something if I didn't do this

  • I'm so glad you have such a great GP. I was treated a few years ago by my GP (whose mother has PMR) and all went well. I now seem to have a recurrence, although my blood tests were normal. However, the pain is particularly bad, especially when turning over in bed. I see her again this afternoon - mainly to check on my depression, but I'd really like to start steroids before Easter. I stick with her as regards the depression as, as a former nurse, I'm interested in pharmacology and would much rather have regular appointments and phone contact with her than infrequent visits to a different psychiatrist each time, which seems the norm.

  • So pleased to hear you have such a good GP and I would definitely stick with him. I was only referred to a rheumatologist as was not getting pain relief from steroids. One thing I would say, my rheumatolgist said better to check bone density with regular bone scans rather than take Alendronic Acid straight off - one less drug!

    I too got PMR without warning, woke up and thought I had cricked my neck. I was 58 and when I said I had PMR a lot of people said "oh yes my great granny has that", not very comforting if you know what I mean! In fact a lot of people from 40 upwards have it I now know. A huge shock as had led an active life. Took me a while to come to terms with it. It is terrific that you are pain free, and I'd say take as much exercise as you feel comfortable with as this has definitely helped me. However, always listen to your body. Good luck.

  • What a super GP you have. It is so important to have confidence in your doctor and makes such a difference, so as you are happy do stick with him. I had a very good GP who diagnosed the PMR quickly but she left the practice. After that I was unhappy with 2 others, one tried to reduce the Pred too rapidly and the other had little to say. I have now found a GP whom I am happy with and will stick to her.

    Initially I was monitored by very frequent blood tests and consultations until the results were normal again(took 2 months). After that I had a blood test before each reduction for a while and when finally the blood tests dropped well into the normal range I was put on three monthly check ups. However at each consultation my blood results are checked and a dose reduction programmed agreed with a very flexible timescale. I was also told - do not reduce if you have an infection, stay at least 2 weeks on each dose, longer if necessary and do not reduce if you have any doubts at all. Phone if any problems or concerns. Hence I only self adjust within strictly agreed limits and so far always downwards.

    Hope you continue to keep well.

    PatM

  • Thank you for your comments. Much appreciated and very helpful.

  • Hi ,your GP sounds a bit like mine, only thing is i lost mine for 6 months as he was away on a course, but he rings me and has even rung me on a sunday night when he has seen results on our hospital website, like everyone says , keep a watch on yourself and take the Alendronic Acid tablets, i couldn't take them so i have an injection of a drug called Denosumab twice a year so its a few les tablets to take.hope you get sorted soon.

    best regards Mick

  • Don't take AA tablets until you have the results of a Dexa scan as you bone density may be good

  • I have suffered from PMR for over 6yrs and i am still having severe pain especially in my right thigh and shoulders. I have been reducing my prednisalone only to have flair up and then having to increase them again. Your doctor sounds like a saint, I have been left to deal with my illness alone and only get help when I can't cope. I an now 73 yrs old and some days feel more like a hundred, I can barely walk in the mornings and in the evenings. It sounds as though you are getting the best treatment possible and I wish you well cynbil

  • Thank you so much for your comments. I realise I am very fortunate in having a caring GP - there's not too many of them out there these days. Also, I feel fortunate in that the PMR which was diagnosed last December, only affected my shoulders and arms. I have been able to be pain free on the reducing Prednisolone and hope that this continues. Until the PMR hit, I had had a reasonably healthy life, retiring from full time employment last March at the age of 69. So PMR was a bolt out of the blue. I wish you well.

  • Hello pjsmum my you do have a super GP, I am also quite fortunate that I can speak to my GP, I was diagnosed at the beginning of February and started on 40mgs as blood count was 50, I am now on 17mgs reducing to 15 and waiting on todays test results. Over the past few days I have had a really funny twitchy type feeling in my jaw which the practice nurse tells me happens with steroid reduction. She checked with the Dr and if I feel I am not happy and it continues they will fit me in right away, I exercise too and have saunas and steams regularly. Hope you continue to improve. I do not have a rheumy either. Good luck

  • Hello to pjsmum, I,m trish 29, I've had PMR for nearly 8yrs with some better times.Reading all the comments on the blog I feel envious of all of you who have a good medical team. Yours seem to be acting fast. I am with a new gp after having a dreadful flare-up in January due to having had the norus-virus and he is now sending me to a new rheumy .I feel that I've never had blood tests done frequently enough considering how long I've had PMR. I,ve had many attempts at getting down on the steroids and you feel pleased with yourself for getting down and then get deflated when another flare-up occurs. Tapering down on steroids is a good idea as I was made to come down to fast in January and couldn't get out of bed until the new gp came out and made me go up on the steroids yet again, I'm now between 13mg-15mg depending on my pain level and day to day routine .

    Everybody is different and PMR affects people in different ways. Good luck and I hope you continue to I improve. Trish 29.

  • Thank you for your comments. I am learning so much from other people's experiences and realise that every single patient is different and has their own problems and issues., We all have to find our own way through this awful maze that is PMR. I had a reasonably healthy life, retiring last March 2012 at the age of 69. My husband and I are enjoying retirement and the freedom that that brings - when, out of the blue, comes this PMR - bizarre - I hadn't been unwell in any way, quite the reverse. It has only affected my shoulders and arms and for the past few weeks, I have been pain free which is wonderful. My GP has said it is possible that "it" will burn itself out in a couple of years - never to return - I hope so. Best wishes to you.

  • It's very interesting to read your stories - thank you!

    I've been diagnosed PMR just two months ago by a GP, who (after blood tests) gave me a recept Prednisolon: first one week 20 mg, then 10 mg/day. I've "practised it" - and feeling quite well now. Don't know for the future, but I have to trust to the GP... and if she does'nt call me - so I must call her - don't know when.

    Anyway: so good to read about your experienses, ty!

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