Tripped up...

OK I am just really looking for some ideas, not really medical diagnosis, but maybe some ideas on where I go from here.

The situation as it stands is:

Over the last 2 years, my asthma just seems to have gotten more and more aggressive and I even got to the point where I was being admitted or seen in A&E at least 2-3 times a week. I really was suffering and I got to the point where 40mg prednisolone was my dose for nearly 2 months. I hated it. I was then changed from Seretide 250/25 Evohaler to the Symbicort 200/6 turbohaler. I have also since been started on home Ventolin and Atrovent nebulisers and Bambec.

Things started going forward and things were quieting down a bit, I was happier and spending less time being used as a human pincushion or guinea pig.

Then over winter things just took a turn and now I am back in a similar situation, I attend A&E at least once a week and am admitted for periods of time at least once a month. I do have a consultant, but never seem to have the confidence to explain what is happening to me and I am really scared because I struggle a lot and am often in lots of pain or overtired because I just can't sleep because I can't breathe or I am constantly getting upset.

My meds as they stand:

Ventolin inhaler + 2.5+5mg nebules

Atrovent inhaler +500mcg nebules

Symbicort 200/6

Singulair 10mg

Pred 25mg (trying to reduce by 5mg a week)

Bambec 20mg

Co-codamol 30/500

Beconase 50mcg

Loratadine 10mg

Sodium Cromogrilate eye drops

Sertraline 150mg

Seroquel 100mg

Zopicolone 3.25mg

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Hi 1 winged,

Sorry youre really going through it.

That is a heck of a meds list.

I know what you mean bout consultants, some of them are so unaproachable & seem to think themselves better than the patients they are supposed to help. Not all though.

Anyway, i found i just clam up & dont ask anything in past.

For me, writing list of questions helped. It stopped me thinking, i wish id asked that. Also, i was surprised to find the consultant was not unapproachable. In fact, he was very good. He answered my questions, addressed my concerns & spent some time explaining aspects of my treatment. I must admit, he wasnt resp consultant, but a consultant i have had many dealings with over many years.

Re the 30/500 co codamol, they are pretty good pain relief, but side affects are sometimes not good.

These tabs will cause drowsiness so added to your present cond, not surprised you feel near end of tether.

Remember, the consultant is there to sort your health probs out.

I know you dont see him all the time, but please ask him about your meds, etc.

You never know, he may be a nice bloke (or woman)

Im sure others will be able to offer lots of advice, take care & hopefully you will be able to gain control again

Howie

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If your in that situation you should be seeing your consultant at LEAST monthly, if not more! If you see them this much you tend to build up some kind of relationship with them and feel less timid. Also i know you said your under a tertiary consultant but with that many hospital trips you should be seeing them more too! They won't know if you've been in so it's up to you to make appt's. Are you not scheduled in at least annually? I would ring up the centre explain the situatuion and i'm pretty sure they will see you. Also you never mention a hospital based asthma nurse? They are amazing and will see regularly and are much less scary than doctors! If you don't see one regualry that's definitley the next step!

x

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have never been offered to see asthma nurse, but do see practice leader in asthma at my gp. hes lovely and i see him often and he gives me good advice and even hugged me once cos i was upset. will have to see consultant more often as there really is something not right here

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Hi

Just a thought have you been tested for aspergillus? My blood test just came back positive for this and candida (yep never thought you could be allergic to thrush!!!!) Am now on anti fungal itraconazole and keeping fingers crossed it helps chest. Have been tested before with negative results so was very surprised.

Also after too many years to think about have changed from preds to dexamethasone. Was needing stupid doses (120mg) to get any relief from pred which was ridiculous.

Hope you feel better soon.

Edit: Sorry I have not even addressed how upset you are! I have been dealing with this awful disease for 40yrs and I still have times were I cant cope with one more admission, one more hosp apt, one more neb, its prefectly normal. Is there anyone you trust you can take to your hosp appt for support?

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support

i am so sorry to hear u are having a difficult time and struggling for answers...

from a support point of view i have found that the people on here are very supportive and the asthma nurse adviceline is good too (number on to left of page (08001216244)

also, i attended a local support group run by british lung foundation, wasnt overly impressed by it, but was okay, maybe worth trying in your local area ?

maybe, opening up to your asthma nurse an consultant about the way your feeling and concerned will help and they can support you?

in the past for both asthma relation problems and other situation i have had to deal with, i have written to Samaritans, they were helpful...

hope you find the support you need, and answers to your questions.

chin up

x x x

[Annista]

Hi 1 Winged. My asthma is nowhere near to being as bad as yours so I don't feel I have anything constructive to add to what others have posted. I just wanted to send you hugs and support to help you to deal with your situation.

xx

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Thanks all for your kind words of support and suggestions. I went to see GP today and he has started me on Phyllocontin (Aminophylline) 225mg. I am really hopeful that these new tablets may help me so much.

xx