I thought I would report back following my 'hip and back' question earlier this week. I had my faith renewed in doctors when I saw a locum doctor yesterday as mine was on holiday. This doctor tested my hip and back and said that it was not PMR related as the pain was only on one side. She is sending me for an X-ray to see what is wrong.
She 'raised her eyebrows ' when I said I had had no tests since my initial diagnosis.
She is now arranging for ESR, FBC, bone profile, and other routine tests. She also spotted that I was receiving no calcium on prescription so I told her I was buying them myself following the invaluable information I was getting on PMRGCA - little plug there! She has now supplied me with Adcal-D3. She seemed very knowledgeable about PMR. I wish she could be my doctor!!
Could I ask now that I am at 10 mg Pred how long should I stay at this level or should I, say in a months time, start a reduction of half a mg and how long should I stay at each stage -assuming my body will allow me.
I feel much better in myself this morning knowing that I am now getting places.
Best wishes to you all and thank you once again for the replies pointing me in the right direction.
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Patricia157
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It's good to know that there are some GPs who are clued up. What a pity she was only a locum. It often seems to me that we know more about PMR/GCA than our GPs and - dare I say it, rheumies! Once when I visited my GP, she had a student observing and asked me to tell her all about PMR which I did, in some detail. So that's at least one prospective GP who knows about it.
That sounds good news Patricia. I was told when reducing under 10mg only go .5mg a month and you should be OK. If you feel OK now you can have a go and see how you feel on 9.5mg.
Oh well done that locum! It seems it isn't unusual to hear from contributors that they have had a better experience with their locum than their usual GP!
You don't say how long you have been on 10mg, but if it isn't any longer than 6 weeks or so, why not wait until the result of your blood tests are in and you can be guided by them together with your symptoms at the time? All being well, you hopefully will then be successful in reducing in just 0.5mg decrements every four weeks or so, at least down as far as 5mg, always depending on how you feel.
We are all different and need to work towards the dose that maintains our particular level of inflammation. I managed 1mg a month from 10 down to 5 but things went very pear-shaped from that point for me so after a hike back up to 10 and fairly fast alternating steps back down to 5mg under the guidance of a wonderful rheumy, 5mg became my maintenance dose for many months. It's all a bit of a case of trial and error: what suits one, of course, may not suit another.
I am convinced that the work done by the likes of Pam, Jean (whom you know) and others throughout the UK who all volunteer to do these talks free of charge and whose Consultants have arranged for them to talk to Medical Students during their training over the past 7 years is beginning to bear fruit.
We even supply them with copies of our DVD.
I have a trainee GP - just moved in next door. He says he now knows more about PMR, GCA and gardening. So when he finishes his training this August and moves into general practice - another one who is clued up.
Yes, sambucca, it often seems the best people to educate some GPs are us patients! I hope your trainee GP neighbour doesn't get confused and start advising his patients on gardening!!
Thank you for your recommendations. I have only reached 10 mg two weeks ago so will wait until September and the results of the various tests before I try going any lower. It will give my body a chance to rest a while at this level.
Many thanks for your assistance.
Keep up the good work. You are all so helpful to those of us who are relatively new to this condition.
Good news for you. Once I got to 10mg I reduced by 0.5mg at a time, and using slow method, mine takes about five weeks to get completely on lower dose. If I feel okay when I get to that, then I start the next reduction on the following Monday. So far, so good. Twice I have stayed on a dose for longer, once when I visited my daughter in New Zealand, and again just recently when I had been doing too much! If you take it slowly, then you are more likely to realise if there's a problem, and can rectify it. It's no slower than reducing overnight, and then staying on that dose for a month, and kinder to your body! And of course, the lower you get, the more difficult it can become, so don't try and rush things.
Thank you very much for your help and suggestions. It is so helpful to us novices to be given your knowledge. It's a shame you had to experience it first! I really appreciate all the assistance you and others have given me.
They were devised by patients for patients and have proved quite successful for others. Several Consultants are using them and you could always talk to your GP about them and then make up your own mind.
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