Feeling a bit down today - after spending 4 hours in hospital this morning after having bone scans, lung function tests, allergy and blood tests, and seeing differnt health professionals, I feel I have completely hit a brick wall.
On the up side, my lung function was ok, and I think my bone density will be ok too, but seeing my cons (the chief professor rather than one of his minions!) didn't do me any good. He wondered if I would be eligible for Xolair and has taken blood for IgE levels, but on my skin prick test I had no allergies come up! So it is highly unlikely I will be able to receive Xolair He is now out of ideas and has said that I am on the most medications I can be without being on daily pred, and that we want to avoid that if possible. I'm already on unlicensed amounts of ciclesonide and am taking tiotropium for asthma rather than COPD (as it is intended for).
I just don't know what to do now - I've suspected for a while that I was on quite a lot of meds, but to be told that it's kinda the end of the road has hit me pretty hard. I'm even beginning to wonder whether I have asthma at all, as my meds won't control it but my lung function is ok...guess I'm just after others people's experiences so I feel I'm not alone
your post rang bells with me. I am also on spiriva despite not having COPD and my cons has also said nothing left except daily pred or xolair.My lung function is also pretty good but he has said it definitely is asthma. I am now waiting for allergy tests (but they can't do them until April apparently!). You have all my sympathy, feel free to PM me if I can be any help or just a shoulder!
Feejay
Yeah, I understand, I'm on 'everything' (cons words) including daily Pred and starting Xolair in two weeks as basically a last ditch attempt to get control over my completely unpredictable attacks. I was told today I need to be patient - hmm, not something I'm very good at!
My lung function isn't so ok and he was talking about my oxygen levels/pressures which I didn't really understand, but I sometimes wonder 'is this asthma' when asthma meds aren't making it better - but then I think, well this cons is supposed to be the expert and I've seen several docs/cons in hospital who don't question it (apart from Dr 'where's the wheeze?'...) and they would have said something if it's not, wouldn't they?
Hi,
I know how you feel, being told they can't do anymore for you doesn't help. I was told by my GP that she couldn't help me and I had to wait to see the consultant, but when I see the consultant they tell me that there is nothing more they can do because I'm already on the maximum and they won't give me prednisolone because I'm on hydrocortisone for my adrenal gland and I might get a burst stomach.
I know why people try alternative therapies now.
Good luck, hope things improve xxxx
I have hit a brick wall...... I have been in and out of hsopital with shoutness of breath that Drs at the time have treated for my asthma. I saw cons today and want to start reducing my meds as he is saying its my VCD thats causing the problem and thats making my asthma appear worse. However \i can tell the difference between an asthma and VCD attack and understnad that when I generally see the Cons on ward rounds its my VCD that it left behind! I just at my witts end. I just want them to try new things but feel thats they arent listening to me!
*Huge hugs*
I know that brick wall feeling, I'm on daily pred and tried xolair but it didn't work for me. Could you try daily pred? At a very small dose and see if that makes a difference?
Em x
I dont absorb pred and drs are saying I dont need it as my lung function is fine and my chest is usually clear by the time I get seen in ED. \they want my off my zafleukast (It never worked but carried on taking it anyway!) all I want it to try a new preventitive inhalor not go on more drugs!
Hi Crazybaby,
I'm sorry to hear you're banging your head against a brick wall. I know the feeling but as the mother of someone with out of control asthma. Has your con. tried methotrexate or cyclosporin or even gold. My daughter was also on overnight i.v Bricanyl and aminophylline via a pump which the hospital gave us and it did buy her some time out of hospital. My daughter had a hickman line in situ because her asthma was life threatening. She had a great Consultant who tried everything including paying for her to go to Birmingham to see Prof. Jon Ayers at heartlands at the brittle asthma unit. I hope some of this is of some help. My daughter was on daily pred ( 40-50 mgs ) since she was 16. I hope you feel better soon. LIZ x
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He is now out of ideas and has said that I am on the most medications I can be without being on daily pred, and that we want to avoid that if possible. I'm already on unlicensed amounts of ciclesonide and am taking tiotropium for asthma rather than COPD (as it is intended for).
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