Sue320

Hi I went to heartlands hospital to see dr mansur after being referred by Cheltenham hospital I have been on 40 mg of prednisolne for 2 years also salamol beclametasone inhaler 200mg montelukast 10mg seretide 500mg twice twice daily calchichew d3 and alendronic acid once a week. And 5mg of nebuliser solution

When I went to heartlands they prescribed me bambec 10mg two tab twice a day and uniphyllin continus 200mg two tablets per day.

My chest is so tight still constantly wheezing taken blue inhaler 23 times today. Walked half a mile as I don't drive and couldn't breathe, can't go into hospital as have children with special needs

Ct scan shows presence of airways reactivity and my FEV1 is 2.51

walking is my main problem going upstairs is agony I leave it as long as poss before I go upstairs

Is there anything I can do I'm only 35 yrs old and I'm scared

Some people have suggested a wheelchair but I don't think my asthma warrants that but dont know if it for the best as i cant walk far at all without being breathless and coughing I don't claim any benefits just want some help and advice

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  • Hiya and welcome :-) the guys on here are awesome, so someone should hopefully reply with some useful and productive advice :-)

    All I can say is that I really sympathise - 40mg pred for 2 years must be a nightmare :-( I've been on 30-40 since feb petty constantly, but we're wanting to reduce to a maintenance of 20mg. Not been on it nearly as long as you, but it drives me up the wall, so huge hugs!!! I am 25.

    Hopefully the new medication heartlands have you on will help, is that a specialist respiratory hospital? It's horrible when you think of all the different medications you're on and still don't have the control you need to have a decent quality of life.

    I just wondered, as you have a neb, whether there is any chance of using it at set times during the day and/or before you go out/upstairs etc? Is there any other treatment options they are considering?

    Regarding going into hospital and having children with special needs, do you have anyone who could look after them for that period (though it would be so hard for you). Just sounds as though you are trying to run on empty!

    With the severity of your asthma, I am sure you should be able to get some help with dla and other benefits, perhaps a cared etc who could help you?

    I am sure I m not being very helpful, but these are just a few things which occurred to me from reading your post.

    Hope things improve, Laura x

  • Hi and thanks for replying yes heartlands has a dedicated special brittle asthma unit I am using the nebuliser approx 3 to 4 times a day which is all the dr wants me to use.

    I am just scared on what the future holds I don't know what to do I'm permanently coughing and the headaches I get make me feel dizzy

  • Hiya, really can sympathise, I was diagnosed with brittle asthma 2 weeks ago after going through a really tough time. Won't bore you with all the details lol. But understand about not knowing what the future holds!

    I am under a normal resp cons, who has a few ideas up his sleeve yet. It sounds as though you are at the right place though and that they are working hard to allow some degree of control! Have they tried you on anything else but pred? I'm assuming they have.

    Take care

  • Yes they have put me on bambec tablets and uniphyllin tablets but consultant can't say when I can come of pred as my asthma is very much out of control his words not mine.

    I hate not being able to do all the cleaning in one go I am having to rest every 10 mins

  • Hi I went to heartlands hospital to see dr mansur after being referred by Cheltenham hospital I have been on 40 mg of prednisolne for 2 years also salamol beclametasone inhaler 200mg montelukast 10mg seretide 500mg twice twice daily calchichew d3 and alendronic acid once a week. And 5mg of nebuliser solution

    When I went to heartlands they prescribed me bambec 10mg two tab twice a day and uniphyllin continus 200mg two tablets per day.

    My chest is so tight still constantly wheezing taken blue inhaler 23 times today. Walked half a mile as I don't drive and couldn't breathe, can't go into hospital as have children with special needs

    Ct scan shows presence of airways reactivity and my FEV1 is 2.51

    walking is my main problem going upstairs is agony I leave it as long as poss before I go upstairs

    Is there anything I can do I'm only 35 yrs old and I'm scared

    Some people have suggested a wheelchair but I don't think my asthma warrants that but dont know if it for the best as i cant walk far at all without being breathless and coughing I don't claim any benefits just want some help and advice

    Hi Sue, it sounds like you are doing it tough at the moment. Whilst I dont have the pressures of children to care for (ironically my lungs are so crap I cant have them..), I can empathise with how you are feeling otherwise. When I hit 35, my lungs went really belly up (I've always had asthma though). Im now 40, use a mobility scooter, have to carry a nebuliser everywhere (and also use it at least twice a day). My FEV1 at best is 1.16, and I have a sleep assessment next week to see if I need night time ventilation. I only claimed DLA this year just after christmas. Im a qualified nurse, and had to give up my job, but pride had stopped me claiming for a long time. The reality is, it has enabled me to get a blue badge, and to use the money to purchase a mobility scooter. I dont like it, but it has made life much easier and less physically distressing. I wonder if there is someone you could talk to about it? A lot of areas have a disability rights place, with advisors you can talk to, they are really helpful and supportive. Its worth noting that DLA has now changed to PIP in some places as the changeover has started and the criteria have changed. I completely understand your fear of the future, as I have it too. My small airways flow was 22% three years ago, and its now 11%. I dread where its going. I've learnt to just try and live for now and not let my mind start leaping into the future, I literally make a conscious effort to stop those thoughts.

    Perhaps think about if a friend had described her difficulties as you have here to us... would you tell her the support of a wheelchair wasn't warranted? It is a big psychological leap, (I fought it like hell) but it really could make life more tolerable for you.

    When is the consultant at Heartlands reviewing your new medications? Has he arranged blood tests to check your theophylline levels? (unipyllin). Levels should be checked a week or so after starting to ensure they arent too high, as there is not much difference between a therapeutic dose and a dose which can cause problems. Im only on 60mg twice daily for this reason, but some people are on more than you - individuals respond to it differently.

    I hope that the referral turns out to be a really positive thing for you over the long term. Seeing a consultant at a specialist hospital has made such a difference to my care.

    take care,

    Lynda x

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