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Should I be decreasing Preds?

Posted , 10 users are following.

gladioli30
gladioli30

Not been on here for some time, although I do get a lot of E Mails which I read with interest. About 18 months ago I was diagnosed with PMR, and went through the usual Preds and then decreasing them etc: Last year I was really ill, had alsorts of tests, lost a real lot of weight, and was in terrific pain. I was so bad my family were really concerned. To cut a long story short I had to go and see my COPD consultant, and mentioned I had quite a bit of chest pain, and he started to ask about my prior bout of PMR. I went to my GP who started me of on 15mg of Pred. Within 2 days, like before I was a different person, my pain had gone, and of course my appetite increased. I decreased to 12 - 5 after a month, within 3 days of the decrease my pain started to return. I am now on 10mg, have been back to GP, who wants me to carry on at this dose, as she is not happy on putting it back to 15. I am supposed to decrease in 1mg every month until I am off them. At the moment I am in so much pain it is really stopping me doing much at all. I really would value your comments, as I can't understand why I have to come off them when I am in so much discomfort.

0 likes, 11 replies

11 Replies

  • EileenH
    EileenH gladioli30

    Posted

    Your doctor doesn't know what she is doing and you either need a different doctor who does understand or to educate this one - which without a fair bit of knowledge could be difficult!. 

    The fact you reduced so quickly the first time may be the reason it is so difficult this time. If you still had pain you should have stayed at the 15mg a bit longer and when you reduced it was obviously too big a drop, 1mg at a time would have been better. There is no point in remaining at a dose that doesn't manage the symptoms because then you have no benefits to offset the downsides of pred. This is a chronic illness, you cannot give a short dose of pred and then taper it off quickly, you need pred at ahigh enough dose to manage the symptoms for at least a couple of years, far more likley for up to 5 years, and she needs to learn about it. Tell her you want to be referred to a rheumatologist - if you can't find another GP who is more realistic which is another option.

    Here is a link to a load of links about PMR.

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    You can help with the appetite side of pred by reducing the processed carbs in your diet to zero - get all your carbs from veggies and moderate amounts of fruit. 

    There will be others along to say something fairly similar I'm sure!

  • Tastyron
    Tastyron gladioli30

    Posted

    I'm no expert but it seems you need to see another GP. You should be on 15mg for at least 6 weeks before even trying to decrease. Better informed members will be here soon to give you better advice. 

    Best of luck.

    Ron

  • maid_mariane
    maid_mariane gladioli30

    Posted

    My heavens you really need as Eileen stated either educate this doctor or find a new one.

    I was in the midst of firing my rumi for other reasons than reduction but kept her only because she is awesome at reduction and willing to work with me, and those rumi's are hard to find.

    Her problem is the lack of caring which I will get from my GP.

    There is so much information on reduction especially on this forum. What I have learned is do nothing until you are stabilized and when you reduce slow, slow is best. I even do longer than dead slow by doubling weeks because my body is very intolerant. Just remember going fast and pain is all wrong.

  • Handbrake
    Handbrake gladioli30

    Posted

    Eileen is so right, I think our trouble is that the Drs are obligated to follow the latest N I C E guidelines ( national institute of clinical excellence guidelines) these guidelines use research based evidence to inform Drs on recommended practice. Our trouble is that little research has been done to help us or inform those Drs who have little experience of PMR.

    Like you I was off prednisolone for a month then pain restarted after a course of antibiotics for toothache. I put myself back on a low dose 2mg and told my Dr who sent me for blood check and results showed my blood results had risen again. After a week I'm comfortable and active at that dose. The good news for some is that Bone density scans have recently been added to the guidelines and mine is now booked, however this doesn't help your pain or your Drs reluctance to help you manage your symptoms. You could try going back to your Gp and explain that the reduction plan isn't working and ask to be referred to a rheumatologist. I feel your pain, stay strong we are all rooting for you x

    • EileenH
      EileenH Handbrake

      Posted

      Bone density scans have been in the guidelines for years - they ignore them wo/manfully! MrsO asked for a scan and that must be 8 or 9 years ago now and was told there was a waiting time of a year so she went privately. There is often a waiting time - but they'll say anything to put you off.
  • jeanne333
    jeanne333 gladioli30

    Posted

    You did not state your age, I'm 74 and I want quality of life. I know the side effects of steroids, and I will deal with them as the happen or don't happen. I have pain under 20mg so if I have to stay at that so be it. The doctors want you off, but it is your body. It is easy for me to make this decision, as my time on earth is limited, as I have a lot of other health issues. I'm a walking medical disaster, but I havnt lost my zest for living or my sense of humor, or my taste for 2 to 3 beers a day. Live for today, cuz it is all you have. God Bless
    • gladioli30
      gladioli30 jeanne333

      Posted

      I am 71, and until 2 years ago I was quite active, but sadly all this has changed. Some days I just sit in the chair, not good, and I don't like it, but standing can be very painful. I have printed off some of the comments I have had, and will be taking them to my GP on my next visit, although some comments about changing Dr's might not go down too well. Do hope you go on OK, keep having the tinnies.
  • Oregonjohn-UK
    Oregonjohn-UK gladioli30

    Posted

    You made an interesting comment in your reply - tinnies - are you in Oz or from there?

    I can also only repeat what other have said, if your GP will not listen to you and probably hasn't a clue about the effects of PMR and the need to reduce SLOWLY  - change him/her or get referred to a rheumy.  I too was very active up to the start of PMR but my GP did listen to me and I tell him how I'm coping and control my own reduction by 'listening/reading' my body. 

    Best of luck and don't let the GP force you into anything that you know is not right - it's your body!

    • gladioli30
      gladioli30 Oregonjohn-UK

      Posted

      No Not from Oz, the grandchildren call them tinnies. I will have a go at my GP, but it's not easy swapping when you live in a little village, our GP's are a bit thin I'm the ground. Will have to do something, as I had a day from hell yesterday. Thanks for your concern. I'm from Yorkshire by the way.
    • Oregonjohn-UK
      Oregonjohn-UK gladioli30

      Posted

      Understand your concerns with the shortage of GP's especially in rural areas - I live on the edge of the New Forest National Park but we are quite lucky that we have a fairly large practice.  I may have an edge on him as my GP is much younger than me, and I knew his father!  He does listen and when he has made mistakes owns up, and is very willing to listen to what I have to say.  He's the 'expert' but the problem with GP's is they are 'jack of all trades and master of none'.

      Spend quite a few years in Yorkshire (the old ridings of West, North and East) whilst I was in the RAF.

    • EileenH
      EileenH gladioli30

      Posted

      Where in Yorkshire? There is a superb PMR specialist (Prof Mackie) in the rheumatology department at Chapel Allerton hospital in Leeds - tell your doctor you wish to be referred there. If you are in North Yorkshire Dr Plant at Middlesborough is good. There is also a very good support group that meets in Middlesborough.
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