Have just returned from a very frustrating appointment with my GP. He appears to be much more concerned with how the pred reduction is going than the PMR itself. Although I have reduced from 15 to 10mgs in about 5 months, it is becoming harder each time as I appear to have fairly severe withdrawal symtoms. Thank you Eileen H for your very useful post on pred reduction. at least I am aware that it is withdrawal and not the dreaded PMR flare up. Because of this site I was able to tell him that after I get to 9mg I will be reducing by 1/2mg a time. Those of you who have got clued up doctors, hang on to them!
Gabriella
Hi Gabriella
Sorry to hear about your Dr I have said time after time that I am very lucky with my GP
With both my bouts of PMR she has said that though their aim is to get you below 7.5 ( when they dont worry about side effects as this is supposed to be the level of steroid our bodies produce naturally ) she has always said I must listen to my body as Im the only one who knows how I feel So that is how we have played it on a basis that I have a blood test then see her every 2 months ( now Im on a lower dose monthly before that ) and then we discuss how to progress
Im glad you are feeling more confident after doing some research and feel you can take control of your reductions There are several people on here at the moment who have been made to reduce too quickly and have had real problems
Do let us know how you get on
Mrs G
Gabriella
Do you have a good relationship with your GP?
Sometimes it can be useful to book a double appointment and talk things through and explain how you feel, that you have read the BSR Guidelines on the diagnosis and treatment of PMR. You can ask him, why he is more interested in getting you off the steroids, when they are the medication which is helping to get the inflammation down to where you can live a reasonable comfortable life.
On average GPs have about 10,000 patients so in a 3 person practice that is about 30,000 people.
My practice is a 4 person set-up and they only have three PMR people and 1 GCA person (me). I consistently see only two of them and as they say, all of us have been on a learning curve.
It could be he needs reassurance and is on a learning curve.
By the way, did you have a referral to a Rheumatologist when first diagnosed or was the GP on the ball. If the latter that at least was good, as some GPs don't recognise it at all and people have a struggle to get a diagnosis.
Good Luck in the future and take care of yourself.
No I have never seen a rheumy, and my doctor was excellent re the initial diagnosis. Says he had another patient with PMR who insisted on reducing the pred at their own pace, so now he has two patients who are managing their own reduction! I hadnt realised how many patients a doctor has, and although I do get on with mine, I have known him a very long time, I think he may be a little past learning curves and looking forward to immenant retirement.
Gabriella, after a horrendous initial 'blip' by my rheumy of all people :roll: and my doc trying to sort it out, I am now more or less being 'allowed' by my rheumy to take it at my own pace!!!
I am going down only by 1 mg a month at the moment and have reduced from 20mg to my current 14mg. Things will be different once I reach 10mg because of the no reduction more than 10% of the current..... have already mentioned this to my doc to prepare her!
Fantastic info on the PMR-GCA North East site and for that I thank them :D
If I had not been directed to this forum by my doc and met the wonderful people here who have been brill at 'educating' me in my PMR and steroids I would have been lost....
I now feel that when I speak to my rheumy ( am seeing him more than my doc at the moment) I speak from an 'educated' point of view and have the facts to hand ..... well allowing for 'steroid' brain that is :lol: :lol:
So wishing you well.....
Have just returned from a very frustrating appointment with my GP. He appears to be much more concerned with how the pred reduction is going than the PMR itself. Although I have reduced from 15 to 10mgs in about 5 months, it is becoming harder each time as I appear to have fairly severe withdrawal symtoms. Thank you Eileen H for your very useful post on pred reduction. at least I am aware that it is withdrawal and not the dreaded PMR flare up. Because of this site I was able to tell him that after I get to 9mg I will be reducing by 1/2mg a time. Those of you who have got clued up doctors, hang on to them!
Gabriella my Doctor was the same last week she made me feel guilty because I was only down to 10 from 15 since Nov 2010. She took new blood tests and wants to see me tuesday to discuss where we go from here lol
Gabriella - your GP cannot be much older than me (most of the medics I was at Uni with have retired at 60 or even younger before they lose their wonderful pensions! :wink: ) so he should be able to learn a little bit still. Of course, whether he wants to is another matter.
sparklin - I am on 8.5mg/day, after being put on steroids in July 2009! The first lot was reduced to zero in 6 weeks :roll: , full return of symptoms and I had to start from scratch again. Then I either had a flare or tried to reduce in too big a step and had to go back from 7mg/day to 10mg. It was ore difficult to reduce the first time and even more so this time, more than 1/2mg at a time just doesn't work. There is evidence that yoyo-ing make subsequent reductions more difficult - and that is what happens when a doctor tries to force patients to reduce when not ready.If the PMR is still active - you can't reduce the pred below the level the PMR needs for control. What you need from here is a competent rheumy who knows something about PMR - Southend would be an excellent option for you with Dasgupta's team. He IS Mr PMR!
Eileen
Sparklin
Take a look at Ragnar's reduction programme, its on the northeast website, under Our Stories and most people who have tried it - have had some success.
Worth a look.
Eileen do you know why the starting PMR dose is now usually 15?
In 1999 I was started on 30 and the progress and outcome was much better than this time. Not necessarily related, I know but I do wonder.
Were there unwanted outcomes on 30? If so how do the GCA people manage? It surely cannot be cost. Pred. is pretty bod standard and long out of\"copyright\", surely?
Now we are being told that ( \"old\" =65 ) people should have no more than half a pint of beer a day. and not whatever the previous limits were. Not sure how that translates into scotch.
Do they just make it up as they go along, perhaps?
Probably a stupid question, but here goes. If steroids reduce inflamation, wont the crp and esr blood test results be influenced by the fact that you are on steroids?
I thought I was the only one who hates looking in the mirror. Absolute hell is the hairdressers where you sit and look at yourself for at least half an hour, and sometimes a jolly lot longer.
Gabriella
Betty - I think it is as a result of trials with various doses and they have found that for most PMR 15mg will do the trick and if not 20mg will. The concern is to keep the total steroid dose from beginning to end of the treatment as low as possible - so obviously the lower the starting dose, the lower the total dose will be. Yes, the pred is dirt cheap so it isn't a cost question - pred is the only answer at present for either and for GCA the high doses and resultant problems are more acceptable because - primarily - of the risk of loss of vision in GCA. PMR may be a pain in the ass but it doesn't have such a dramatic endgame. The higher the steroid dose the worse the side-effects which is why there are the attempts to keep the dose down and the push all the time to reduce, reduce, reduce.
I have this suspicion that the use of the higher doses in the old days possibly had a better longterm outcome at the time because the inflammation was bashed over the head more thoroughly at the outset. It parallels with my belief that there are a lot of us with something half way between \"standard\" PMR and the usual presentation of GCA where a higher dose would actually give a better result but there is no easy way of telling who is who. ESR and CRP don't always work - mine have never been up but I think I have elements of GCA (but then again, about a fifth of GCA patients with the full-blown version have normal values of ESR and CRP). I think MrsK has recently mentioned that CT and MRI scans can be used to identify arteries affected - but that isn't offered routinely for diagnosis. Maybe it should be.
Half a pint of beer isn't a lot of Scotch! However, a solid intake of alcohol in the form of gin and champers didn't seem to affect the Q.Mum too much - she imbibed rather more than the equivalent of a half of beer! Making it up as they go along? How could you think such a thing :wink: :roll: - but I do know that the five a day fruit and veg thing is just a number and there is no evidence for any specific amount and it varies from country to country.
Gabriella - that's exactly the point. As the inflammation reduces, so should the ESR and CRP so, for anyone with raised markers at the outset, they can be used to see if and how the pred is working on the inflammation. Some of the beter doctors check them and tell their patients whether trying a drop in dose is a good idea: i.e. they check before and after a drop and then again a bit later to see if it has stayed stable, if so, the next drop can be tried. Some people can tell you that their blood values are going to be higher by the pain they have - others have the pain and no raised markers.
I can cope with the hairdressers (if nothing else I can take off my specs :wink: although I prefer to use contacts so I can see what the hairdresser is doing) but the hotel rooms with a mirror in the bathroom that you can't avoid coming out of the shower or sitting on the loo are the most demoralising to me. You can hide a fair bit with clothes :wink: :lol: And BTW - no such thing as a stupid question. If you needed to ask it you needed to know the answer. The only thing would be a stupid answer!
Eileen
Hello all
Half a pint of beer !!!!!!!!!!!!!!!! What scientific experiment did they do to come up with that magical figure You can imagine them going into a Rest Home and testing all the residents with different amounts of alchohol to see what happens !!!!!!!!!!!!!!!
As you said Eileen several tipples a day didnt seem to hurt the Queen Mother My friends father died recently at 87 with no previous illness and she knows he got through a bottle of Whiskey a week and she said she is happy to go in the same way
I do get fed up with one day being told Red wine is good for you then bad for you then the same with coffee !!
I would think they had better things to spend their money on than these silly ideas !
Mrs G
Oh. Hooray, Mrs. G., for the Queen Mum and your friend's father.
Who are the benficiaries of these non very scientiific recommendations?
Pity they don't put the same \"research\" into some of the dugs that are being pushed.Commercial Cofidentiallity I believe it's called.l
Happy weekend everyone.
Hi all,
Many moons ago, when I was a student nurse, we gave our elderly patients a daily pint of Guinness and made them egg-nogs laced with brandy or whiskey:wink: .....we were tested on our egg-nog making by MATRON....who was somewhat of an expert !!!
They all enjoyed them thoroughly and suffered no ill effects, other than an increased tolerance of their illness :!:
Perhaps not seen as totally PC these days, but they all appreciated it at the time :lol:
Love to all, Pauline.
The evening before David went to theatre for his thoracotomy (in a heart unit as they weren't sure how much the aorta might be involved) everyone scheduled for surgery the next day was visited by the drinks trolley! He asked if this was normal and they said yes - it was the most effective way of saving them having to scrape patients off the ceiling when they were panic stricken about surgery. :lol: They had also had a drinks trolley on his oncology ward, filled with donations from grateful patients and their families - but his consultant disapproved strongly being TT :? . However, it didn't really matter while he was on chemo - I knew he was REALLY ill when he didn't want a beer :roll: :wink: :lol:
Eileen