Sorry for the rude title, the consultant on the phone yesterday wasn’t completely crap- he explained MART to me thoroughly and confirmed I’m on that regime.
However, he said he cannot refer me for biologics testing as I haven’t taken 3 courses of pred.
I have had 3 prescribed in last few months however I have severe psychotic reactions to pred so it’s sadly not an option for me to take, so one of the courses prescribed I was too frightened to take. He basically said unless I take a tbird course I won’t meet criteria for biologics . I explained that by 3 days of pred I hear voices - self harm and am suicidal (only on pred - no psychosis previously)
My question is - as I am clearly unsuitable for pred, is there not a way to refer me anyway? He kept saying a few mental health issues are better than dying of an asthma attack. I honestly don’t want to die from either but if I take pred again I probably will. I can cope with insomnia and feeling low but I was hearing voices and have never had such a strong urge to cut open my veins. My Gp supports I shouldn’t take it again but I feel consultant disbelieved me.
I just wondered if anyone of you knew a way around it please? I can never ever take pred again. Even low doses.
Thank you
Written by
Emzcat41
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If your GP is as supportive as you describe then I would book a telephone appointment with them and ask if they can write to the consultant confirming the situation with regards your mental health while on steroids and that you shouldn't be refused access to biologics on such discriminatory criteria. You can't be the first asthma patient who can't tolerate steroids but whose asthma is severe enough to warrant biologics.
Obviously, you would have to meet other criteria for biologics, not all asthma is the same and so testing will indicate your suitability for this treatment. I'm assuming you have eosinophilic asthma as you believe biologics are a possibility.
If your GP gets nowhere, you can use PALS (every hospital has a Patient Liaison Team) to lodge a complaint about your experience. Any complaint would be more successful if the facts are set out clearly, without any reference to your personal opinions about the consultant (as in your question title). If you go down this road then get a family member or friend to check your complaint before you submit it - a fresh pair of eyes can spot a hole in your case or may suggest a better turn of phrase.
I don’t yet know the type of asthma I’m awaiting tests - but I don’t want to be ruled out just because I can’t take steroids IF I am a suitable candidate because as you say I feel it is discriminatory.
I understand how to write professionally , I just cba for this post tbh as it doesn’t call for it. I certainly wouldn’t call a consultant crap - however in this group I know I can
It's frustrating when consultants don't communicate well, and that includes listening. I note from a previous posting you were going to stop your inhaler so that they could test your eosinophil levels. There are more options for eosinophilic asthma but if you have non-eosinophilic asthma then the phenotype (sub type) will indicate which treatment will be most beneficial.
Non-eosinophilic asthma doesn't respond well to steroids, which are good at dampening eosinophilic inflammation, as the inflammation is caused by other factors.
Once you know your phenotype (ask that question otherwise they may not tell you) you'll have a better understanding about the treatments available. It doesn't follow that biologics are suitable for all asthma types.
Re the complaint - I've seen many complaints in my work and some folk let emotion, usually anger or fear, cloud their correspondence. The phrase that usually hits home is, "I cannot express my disappointment enough" - disappointment is quite a powerful word and is descriptive of one's feelings of being failed or let down without getting personal about the person handling their case.
Once you know your phenotype a chat with one of the Asthma UK nurses who can help you understand what treatments are available.
I also get bad reactions to prednisolone, (My husband calls them the Mad Pills). The very first time I took it, I nearly committed suicide. However this drug has saved my life. I don't know how much you were prescribed, but now when I have a bad go of Asthma, my current consultant has adjusted the dose of prednisone to be much lower, He made the calculation according to my height & weight. Instead of just being told to take 40 or 50mg a day for 5 days. I now take 30mg for 7 days, and the side effects are so much less, and the benefits the same. My GP questioned this, but apparently it is the most up to date way to prescribe the minimum effective dose. So you might want to try again at a low dose in consultation with your doctor. I am sure the Asthma UK nurses could help.
In terms of being prescribed Biologics there are other tests that would indicate that you benefit from them. You should have already been given a FeNo test to see how inflamed your lungs are and if your inhaled steroids are working. If your inhaled steroids are not working, then they need to do other tests as well.
It seems completely arbitary that there should be a cut off of 3 courses of Prednisolone in order to qualify for Biologics.
I would also potentially ask your GP for a second opinion from a different Tertiary consultant from one of the great Lung hospitals, RBH, Southampton, Heartlands, or Leicester. Look at their Bio's to see who specialises in Asthma and Biologics.
I believe the cutoff is actually exacerbations bad enough to need steroids - so you need at least 3, or 4, of those in a year (anything from needing pred to hospital admission for asthma), as well as having the right markers like raised blood eosinophils.
It doesn't seem like Emzcat's consultant either understood this or explained it well. It can be a bit arbitrary but these treatments do work best in specific groups (and I won't deny there is a cost element).
However, as someone with a type of asthma that doesn't respond to steroids, so doesn't get them for flares below admission level even when others would, I would hope they are looking into other ways to define exacerbations. I can understand the need to have criteria, but I find the reliance on steroid use to define a flare a bit backwards, and it isn't helpful in cases like Emzcat's. Though of course there's still a need to balance severe side effects with the asthma benefits for those who do respond to and need systemic steroids.
Also wanted to add that there are about 15 tertiary centres across the UK now if Emzcat is looking into this (for example two more now in London, plus Addenbrookes, Wythenshawe, I think Glasgow and others). I wasn't sure if you were just providing examples, but saying this in case they are considering it and those centres you mentioned aren't close to them.
Also all these amazing top hospitals people keep mentioning......well anywhere is amazing if you fit their box. For more classic asthma, even when it's severe, that's much easier. But for people where it's not classic, these top hospitals are often not that great - so some "shopping around" might well be needed!
I was just providing quick examples of the ones I know. I have been through so many consultants (some dreadful ones included) over the 50 years that I have had asthma. Its definitely true you need to find a consultant who specialises in the type of Asthma you have. ( for other peoples info you can always find their Bio's and published work online and it can be very helpful to know who you want see, even if you only get to their clinic rather than see them in person.) I was referred to my current consultant by another consultant who thought he would be a good fit for me. It's really worked out very well although he does seem terribly young!!!!R x
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No one believes anythings wrong...apart from the consultant
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