House of Lords Debate PMR & GCA: Tuesday 31 March 2011

MrsK. Good morning ! This morning I have scrolled the Debate held at

the House of Lords.regarding PMR. There is a lot to read. So, I am going to read it a bit later on, when I will be more awake....You are always such a busy Bee....and so dedicated in helping those patients that manage to find their way onto this Forum. I take this opportunity of thanking you and EileenH, and so many more of the Ladies that give their time to keep the information about their esperiences with this PMR condition, on record. I would NEVER emotionally have survived the havoc that this beastly unwanted illness can bring into one'life. When I was struck with PMR, I thought my life was over. Now, 8 months later, I feel so different. ALL DUE to the invaluable information I gathered on the Forum. The tenacity shown by some of you Ladies, into the aim we all have, to get better, is an inspiration. I try to keep away from doctors, as much as I can. Found them mostly not adeguately informed about the whole scenario of this illness.From reading about the esperiences on this Forum, I have been able to organize my own plan of decreasing the doses of Prednisolone. I have a calendar, and mark my daily dose, day by day. I am now on 6 and 5 mg on decreasing process. It seems to be working ! Touch Wood !.....When I reach 5mg per day, I shall go and ask the doctor for Blood tests. Keep an eye on ESR :roll: Thank you again for helping me so much, in coming through this tunnel of pain and despair. Love and good wishes to all that are on this difficult journey. If I am improving at age 87, so it is possible for you younger ones ! Keep on ! Love :rose: Granny Moss. xxx

Have saved the debate to read later but a first whip through has brought back all my horror of steroids. There are so many conflicting opinions.

Sometimes we hear that long term use is very detrimental; but at what dose? Then some say that the body makes its own cortisol at a similar level to that of a 7mg dose so no need to worry when you get under 10.

Then some of us gain weight( I don't ) some get moods ( DO! ).

My friend with the husband who took Pred. for 11 years says \" never mind we are not going to die young now.\" Well, no, but I'm still rather enjoying life much of the time and I'd rather die of an illness than the treatment, please.

I thank my lucky stars for my GP when I read some of the horror stories.

BettyE - yes, the effects of steroids can be awful. But so can sitting in a chair in constant pain and unable to live a normal life.

My reading of the debate suggests to me that the lady concerned was put onto high doses of prednisolone and not monitored on a regular basis by a GP who also ignored the evidence of his/her eyes and failed that lady as a result. Of course, it is also possible that she did not go to him asking to be looked after but happily took her pills \"cos the doctor knows best\". We cannot know. Steroids should not simply be handed out months worth at a time and no follow-up carried out. There are statements made in that debate which I find questionable.

I also do realise that I - like many of us here on this forum - have a very different background from the vast majority of the general public, including members of the upper house. I would have been asking what was going on at a much earlier stage - when she started showing \"Cushing's\" signs as they are signs which should be alerting the doctor responsible to something being wrong.

As we've said so often before - there are 80 plus side-effects of steroids. No-one gets them all. Some people get none. Some people are dreadfully unlucky and get some of the worst. We are taking longterm steroids, yes, because that is defined as taking them for more than a few weeks with a rapid taper. However, there are many many people all over the world who are on higher doses and for much longer periods of time than we are generally going to be on them. The desire is to get us to 5mg/day - at taht level the side-effects are really few and far between when you take the entire steroid-taking population into account.

Think about what you said at the end - \"I'm still rather enjoying life most of the time\". How much of that enjoyment is because of the pred you take? I can still remember the 5 years pre-pred and how much I wasn't able to do, how much pain I had on a daily basis - and the depression. I won't go into the 6 months immediately before being given pred which were even worse - but much longer of that and I would have been suicidal. For 18 months I have had my life back in every sense of the word, There are bad days - but they are few and far between - and there are things I still struggle to do - walking any distance, in particular. I was on my way down to 5mg and it went pear-shaped. I'm reducing again and the hand joint pain rears its head each time I go down. It wasn't there at all at 10mg and I'm hoping it is more steroid-drop rather than the PMR synovitis coming back. As long as you and your doctor are playing the game according to the rules you should not end up in the state that lady did. Looking at the patient and doing the right bloods doesn't take much effort - just a bit of brain and conscientiousness.

Don't feel too bad about the steroids,

Have a nice weekend,

EileenH

Eileen, you are a great comfort. I just wish we knew how to filtre out all the misinformation that is around. I tried to do without the steroids and at first there were benefits but they were short-lived and in the end I came down on the side of less pain. but I do think patients are entitled to more info on the subject. We are all able and willing to do some of our own investigation. We have the tremendous support of this forum but I do wonder about those who do not have those advanteges.

Many of my contemporaries do not have the confidence to use the internet. I am more than happy to order their books etc. no Amazon et al but I would be very ary of looking up health questions for anyone.

I do fear that before long it will be assumed that patients are computer savvy. It is already the case in many spheres. On the other hand, those of us who do have the benefits of web sites and forums ( a ?) might just make the professionals a little less dictatorial and all-knowing. Swings and roundabouts.

Thanks again for all your input. BettyE

BettyE

I do know where you are coming from and my heart aches for the people out there who are struggling along. No internet at all and no support.

But there is a new National Organisation PMRGCAUk and there are some support groups, one of them is, yes you guessed it, PMR&GCA UK North East Support, and on that website there is a page for contacting support groups and self-help groups in England, Scotland and Wales. None yet in Northern Ireland.

The aim of PMRGCA UK is to set-up support/self help groups throughout the UK.

There are no paid posts in any of the current organisatoions, we are too small and too new - but we will get there on day. Without Volunteers, however little they can contribute in time or money. we would be going nowhere.

Mrs O reported an initiative in her neck of the woods and we are watching with interest.

In the North East we cater for snail-mail people as well as those internet savvy, but there are only four of us. We also cater for out of or area people, who do not have a support/self help group where they are located again both snail mail and email.

We look forward to the day, when each city or town has a support/self help group and that we have managed to get some research into cause and cure, but mainly friendlier medication.

It won't happen in my lifetime, but we will try and keep on 'carrying the candle' as long as we can and then hopefully pass the light on.

In the meantime, we have each other on here.