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Help - Treatment Steps - very upset and scared

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Hi all,

This is further to my post earlier about the Spiriva inhaler really.

I've spent the evening stewing over the consultant telling me we are running out of treatment options and feeling really angry and upset and.....quite frankly.....scared.

I've had a look at the BNF treatment steps and it would appear that from what the consultant is putting me on and suggesting for next moves I am on step 4 and looking step 5 in the face.

I know there are people on here with really severe asthma who are on a lot of treatment and would really value some advice on how to cope with this ramping up of my asthma.

Being honest I have seen a rapid deterioration and increasing loss of what was good control over the past 8-9 months and the treatments don't seem to agree with me - to the point that even for the slightly better control I can't tolerate them.

How do you come to terms with this and can anyone suggest some treatments I might be able to take? I have tried Theophyllin which gave extreme headaches and Singulair which kind of sent me off my head with the vivid dreams and sleep disturbances.

Any ideas or words of calming wisdom for me anyone?

Fee

*edit - had to correct spelling mistakes to make sense!

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3 Replies

Hi Fee, think u could do with a chat too someone about your questions... looking things up sometimes help but it can also trigger loads of questions and overload off information,

at the clinic do they have respiratory nurse you can talk too, also there is a number on this website to speak to a nurse,,,, the nursewill use information that you will help you understand things a bit better. Dr aim to get best response for their patients and may seem heavy with the medicine in order to get some normality of daily activities

HI Fee,

Easy for me to say I know, but don't stress about it too much, stage 4 is where I'm at but don't think about that, but you sound like you really do need to have a long chat with someone, the nurses at AUK are a good start, but is there a possibility that at the hospital where you work, someone with a bit of knowledge could help? or maybe they know someone in another who you could chat to either in person or on the phone.

Addendum: Doc may seem to have gone over the top, but gaining control is probably his main aim, and then once you settle down, you can always try stepping down which is what they like to try and do if possible anyway

Hi Fee,

sorry to hear you're not too well. My daughter had a Hickman line inserted because of poor venous access and eventually when she had been on all the usual drugs as well as Cyclosporin, methotrexate. and gold she was put on 12hr i.v bricanyl and aminophylline. Thase were given overnight and I had to be taught how to draw up the meds as well as use the pump but it did help her. I don't know if this is something your cons. could consider.

I hope you feel much better. Take care. x x

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