XOLAIR

[Matti21]

Anyone been on xolair for a fair amount of time and decided it's not for them and stopped it. I've been on it 2.5 years, no improvement with symtoms and feel its a lot of money for little if any difference. Just wondered if there are others out there like me. Thanks

[TheOriginalSim]

I've been on it year and a half now. Thinking of coming off it too but only down to the fact it's making me feel more worse than it is better. There's only 20 people on it at my hospital and only 3 people have come off it in the last, one because she was pregnant and the others because it was too much of a hassle. It's the uncertainty that is the worst because you don't know how you're going to react to it until you come off it

[Matti21 in reply to TheOriginalSim]

That's the scare tactics the nurse uses on me but as a nurse myself I know I'm worse than ever in my life and they don't know the long term effects. I find only one respiratory nurse believes me when I say I'm coughing up blood and even taken pictures to be told by the other not you worry maybe a burst capillary. It was my GP who arranged x ray and I've a CT scan tomorrow. X ray indicated pneumonia so I was treated for this but I feel the lack of support from my nurse and a consultant that should be retired, two weekly trips for 4 jabs, long term unknown effects but I'm starting to believe I've never been as ill since I went into this. Yes 4 courses steroids a year, infections however its no different now. I don't know if you're the same I don't know how many r in it but it's not a city hospital but large town in the north east. Thanks for replying, hope someone comes along who has come off, for their perspective, it's made no difference to my asthma at all.

[angievere in reply to Matti21]

So sorry to hear this Matti. Would your consultant allow you to come off it for a trial period? Although it's your decision ultimately of course. Best wishes.

[Matman in reply to Matti21]

As (I believe) it's a fairly recent drug, I'm guessing that data is limited to the relatively short-term clinical trial period. Did your Treatment Team not provide an 'expectations forecast' / plan when treatment was first started, that set out what kind of improvements should be seen, plus the expected time scale for the 'hoped for' improvements in your condition? Was there / is there no benchmark review dates to assess progress or decline?

Don't know whether it's a problem of funding or poor training in this country, but people on drugs (or any sort of treatment for that matter) deserve to be managed in a much more vigorous and disciplines 'scientific' fashion, rather than simply ignored unless they shout loudly.

A real worry is that, in some cases, the absence of better monitoring and supervision might be a consequent of trying to appease drug companies who, in some discrete fashion, are contributing equipment, training resources, discounted drugs etc, and must not be 'upset' by negative feedback (that might stand as a black mark against their drug) in case they stop contributing.

I'm not saying that this is the case as far as the drug you're taking is concerned, only that it is something I worry might happen when general funding across the board is under pressure.

Consider getting your concerns listed and communicated 'in writing', so that they are 'on record' and cannot be ignored. (Make sure you get a written acknowledgement). Include what you want to happen to alleviate your concern, i.e. don't just state your grievance, advise what you want done about it, e.g. one or more specific tests you've identified, a change of meds or whatever it is you feel you need.

If you're not sure what 'action' you should be asking for, consider first going to see a Private Consultant. (Research Private Consultants who specialist in your 'condition' online before you chose one who - ideally should have an an impressive Bio plus no obvious affiliations that might work against you). The typical cost for a Private Consultant's Initial Visit seems roughly to be around£350 (but check in advance). £350, while not cheap, is within many people's means (what's more important than health to spend money on?). As you may well know, the 'bigger' private treatment costs tend to come 'after' you've seen the Private Consultant - for example Imaging and other Tests can cost a 'packet' when done privately. Some Private Tests (e.g. Some Blood Work etc ) are not always so expensive - though you do end up having to see the Private Consultant a second time in order to discuss the results, and would be charged for that second Consultation too - so (if this approach makes sense to you) the plan would be to avoid that, and aim to only see the Private Consultant 'once'.

To save time and - hopefully - cost, make clear - in advance of your Private Consultation 'in writing' - what you want from the consultation, e.g. Advice on what Tests / Treatment you should be considering, also list briefly the symptoms that are worrying you and all the meds you're on (include copy's of any recent Test Results). Restrict your Letter to one page of A4 or less, otherwise the Consultant may decide that you're going to be too 'difficult' a client to please, and may decline to see you. The idea is to avoid a second Private Consultation visit by arming the Private Consultant (up front) with as much info as possible before you enter his / her office for the first time. (Obviously, *don't* reveal that you will *not* be having any Tests / Treatment the consultant suggests done 'Privately'). Take a Short Checklist with you when you go to see the Private Consultant so you don't forget to cover the top 5 Points you need guidance on. Tell the Private Consultant to write only to 'you' (NOT to your current physician / consultant) with his / her conclusions / advice. A Private Consultant is (theoretically) working 'exclusively' in your best interests and is not partly guided by a Nationwide or Local Authority Health Budget. Therefore what he or she suggests should be the very best advice you can hope for.

Once you have the letter, before deciding whether or not to show it to your current physician, decide if what's said in it will help or hinder you in getting what you want. If you conclude that it will help you, send your physician a copy of the letter, then make an appointment with him / her and take a further copy with you (keep and don't part with the original). Discus the Private Consultant's Letter with your physician / consultant and use it as 'leverage' to get the Treatment you need / want. Some people go as far as seeing a couple of Private Consultants and using the resulting 'letter' that they like the sound of best. Letters from Top Private Consultants who hold or have held prestigious positions should carry more weight than those from Consultants with little in the way of a Decent Bio, though you may be quoted a higher fee for going to see a Top Consultant (so check the consultation cost first).

[Matti21 in reply to Matman]

Thankyou for taking the time to write such a comprehensive and accurate reply. I will re read it later and again it is exactly what I would usually do. Thankyou

[Steven9818 in reply to Matman]

Omalizumab has been available for nearly 20 years now. There is a lot of good quality data supporting it's use/efficacy.

[TheOriginalSim in reply to Matti21]

Mine worked at first for the first year or so. I'm at a city hospital and have the opposite I find that the doctors don't listen but the nurses do. I'm on the same dose as you which is a rare find but sounds as though it's not doing anything with you so probably best to come off it. Hope you get the reply you were after

[Matti21 in reply to TheOriginalSim]

I'm sorry news to this but did reply but in seperate box. If love to know what you decide as I'm a nurse myself and feel worse than I did before but it's like you say it's the uncertainty that's all that's keeping me on it.

[Matti21]

Thankyou for taking the time to write such a comprehensive and accurate reply. I will re read it later and again it is exactly what I would usually do. Thankyou

[Steven9818]

There must have been some improvement after the initial 16 week trial period or they would have stopped it then. In saying that, if you feel it is of no benefit then you are perfectly entitled to stop it. But discuss it with your consultant/asthma nurse first. If you decide to stop it the effects last for a couple of months so it may be a while before you know for certain whether it was of any benefit.

[Matti21 in reply to Steven9818]

My asthma nurse keeps saying I'm better like she's not listening to what I'm saying. When I coughed up blood it was don't worry it may be a small capillary. I'm hoping to have a review with her senior to mention a change and if possible change of consultant as no one listens. I take pictures on my phone of sats, peak flow, blood or brown phlegm. That's why I'm considering stopping it. This never happened in my life ever. I had quite regular infections and Prednisolone but never went to A and E as a nurse managed my symptoms but in the future might ring ambulance so it's recorded. I get more help from my GP. Thanks for the response.