Be careful out there

I do not want to make you all paranoid and suspicious but feel the need to warn everyone to be aware. We are all trying to get used to the new site and know that there are some teething problems - some of the safety featuers of the old board are not part of this one as yet.

While things are still new I think that we all need to be careful who we give our contact details to.

This is a public forum and anyone can post. Last year we had some problems with people who posted many things that later proved to be untrue and it caused lots of bad feeling and upset. So just take care.

In addition I am aware that many of us are on high doses of some medicines. I myself take four drugs at unlicenced doses. However all have been sanctioned by my consultant.

Please Please ask a doctor before you up a dose that you read about here or see that someone else is on - what suits one person does not always suit another.

I have found the board an invaluable source of help this last year. We all want to be able to access the support, help, friendship and understanding of others that the board offers but we also need to be careful as well.

Den

7 Replies

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  • Hi Red Den

    i think that is very wise and very true

    thanx for being so caring and looking out for us all

    hope ur well and have a nice relaxing day

    hugs

    mary xx

  • Den

    Pleased you have mentioned this I am in a similar position to you and therefore dont mention my doeses, as do not wish anyone to be misled.

    we should always be guided by what our our consultant, gp or nurses states. If you are in doubt these should always be your first port of call for changing anything related to your medication.

    I am sure we are all sensible but sometimes desperation to feel better can make you want to try anything.

    Caroline

  • Well Said!!!!!!!!!!!!!!!!!!

    Well said Den. I just wanted to add that unfortunately messageboards and open forums have been known to attract some people who are not genuinely as ill as they say they are. Each of us react to our illnesses very differently for one person to have to take an inhaler is a major step and makes them feel there life is restricted. For another person they live daily taking numerous meds and nebs etc neither makes one more ill than the other. We in no way want to make people suspicious of each other but after last years experience and knowing the untold damage that did to people who were genuinely ill. We have to be very careful. Of course on the other hand there are always the ones out there that amaze the Dr's because of there uniqueness of syptoms, reactions ability to recover etc.

    These boards have been set up to help each of us through a difficult illness to live with and for some people this illness can be fatal. Living with that fact is both unnerving and scary. These boards are therefore very valuable and not a plcae for competition as to i am more ill than you type conversations. It has been set up so that those whatever their circumstances need support and help to cope with life as we face it daily. Also many of the asthmatics on this board are not your typical asthmatics in that they have tried with limited success the many forms of treatment out there.

  • Thanks for the warning Den. Of course with the ability to be able to message each other on this site that warning is doubly important. It is deffo worth remembering that the ""normal"" rules for internet safety should be observed even somewhere as friendly as AUK.

    Bex

  • thank for the reminder Den,

    people can be so friendly and you can forget about safety. It is easy to forget that others can use information that you post to make things up or exagerrate.

    rusty

  • Thanks to you all for replies I debated long about this post before deciding to go ahead. Its just about being aware this site has several problems that mean we do need to be wary - you could say you were any age, gender, severity etc. Sadly there are people who will exploit the frendship offered here for lots of reasons.

    But don't get too hung up about it all

    Den

  • Absolutely spot on Den. Your post has my full backing. We must all take care here and whilst I've found the forums helpful in times of need and made friends here as well, I think it's very important than as we offer each other suppport and advice it's also vital that we treat people as individuals and hammer home that most of us are not medically qualified. In the past I have offered my own experiences with others but have always made sure that I make it clear we are all different and suggest people talk to their GP, Con or Asthma Nurse before doing anything. I always think that although support and shared experince is very reassuring, it can't replace good old-fashioned medicine from people who know what they're talking about!

    I also think it's a shame that there was bad feeling and upset on the forum not so long ago. I don't feel I can comment too much because in truth, I'm not too sure what was said or what really happened. I just think it would be a travesty if people felt they couldn't post here anymore.This forum has always been a friendly place to me and there are good people here!

    Stay well everyone.

    Much love, Fluffy. x x