I have severe asthma which doesn't respond well to conventional treatments and has been getting more brittle month on month. I've had 2 x 10 day hospital admissions within 3 months and was very close to needing ventilation on the last one.
I would be eligible for the biologic injections, except I've been on high dose Prednisolone for years and have not had a high eosinophil count because the drug suppresses them.
I am waiting on the new biologic to come through NICE approval, but there's no way of knowing how long that will be.
My asthma team has suggested one other option, which is to admit me to hospital, stop the pred and see what happens. While this sounds scary, the more i think about it, the more I'm coming round to the idea.
It's likely I'll have issues with my own cortisol kicking in, as a few years ago i had tests that showed my response was "sluggish" so that is one of my concerns.
Has anyone here been through this process, and if so, how did it go for you?
Written by
CindyID
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Hi there! I'm very sorry you've had such a difficult few months. Your recent exacerbation sounds quite scary. Even with a great care team and supportive family and friends, those kinds of experiences in the hospital are terrible and very isolating.
I am on Xolair and it has worked pretty well for me though I'm wondering if its efficacy is waning as I just got over a wretched two month flare that was the worst I've ever had.
I was on prednisone for so long that I developed adrenal insufficiency (AI) three years ago and now I have to take hydrocortisone every day. I'd be very careful when you wean since it sounds like your cortisol was already low a few years ago. The body can lose the ability to produce it on its own even after pred courses that are just a few months long.
Make sure you get your cortisol checked regularly and that you taper slowly. If you have developed AI, there are a bunch of us on here who can support you and there are several great threads in the archive on how we cope with day to day stuff.
Sending a hug! I hope you get approved for the biologic soon.
Thank you, yes I've made it clear to them that my levels were low and I will keep reminding them if they agree to go ahead. Been trying to wean at 1mg per week but haven't got below mid-twenties in the last 2 years before hitting exacerbations. The "standard" plan in hospital (although I'm really not sure how common this is) is to go down 5mg every 3 days, but for me it may have to be slower and they're going to have to monitor me very closely.
Thanks for your good wishes and i really hope the Xolair keeps working for you xx
5mg every 3 days is a pathway to hell on Pred. 1mg every 3 weeks is manageable for long term users. Again this type of taper is a standard taper for high dose short term use. It’s unbelievable how little the medical profession know about pred tapers and long term use.
If it’s any use my endo is the worlds leading expert in pred and he doesn’t see any reason why anything under 11mg cannot be sustained for life.
Sorry to hear it's so hard to control at the moment. The whole catch-22 with bios and eosinophils is very annoying and difficult for many people, and it would be great if they could find another way to approach it.
The only thing I would say is you may need to stay on top of them about the cortisol issues. I have had adrenal insufficiency (it went away because my asthma doesn't respond to oral steroids much so I wasn't taking them, and my adrenals got a break to wake up). I found I had to really educate myself and push back at times because too many medics, *including asthma teams* are not always the best with adrenal stuff, and can advise things that are not safe. I've had many admissions where they try to do odd things and I have to be able to say no, I need this at this dose and more or less on time (following the advice of my endocrine specialist nurse, I wasn't just making stuff up and demanding it!)
Your team may well be great, but it helps to be able to advocate for yourself (I can't do this for asthma but I can for adrenals), and to ask for endocrinology to be involved with planning/monitoring the wean.
Thank you so much for your reply. I've typed out a detailed response to Hilary above. Just to add, the new biologic that is currently goingthrough NICE approval doesn't require high eosinophils and has fewer side effects, so obviously my team knows I'm keen for that ASAP. there's just no way of knowing how long that will be and I'm so tired of dealing with the pred side effects
On top of everything, I've got a whole list of new health problems since i had covid (the cause of my last admission and worst ever asthma flare up) and honestly I'm just done with the lot of it! I know it'll be risky but at least I'll be doing something. And if it doesn't work its good evidence for me needing the new one
don’t do anything without the supervision of an endocrinologist. It is highly likely that you have secondary Addisions as a result of continued steroid use. I have this condition as a result of years of prednisone use. Most doctors and medical professionals do not know anything about Addisons. So if you do want to experiment in hospital make sure you are u set the supervision of an endo with Addisons as a specialisation.
A therapeutic ratio and safe level of corticosteroids for Addisons is around the 0.8 mg/kg upto 1.2 mg/kg. This is what prevents you from having an Addisons crisis. To calculate this you have to multiply your prednisone dose by x6 (this the is the corticosteroid effect multiple based on cortisol at x1) so a 10mg dose would have a corticosteroid effect of 60mg if you are then 100kg you would be in a safe therapeutic range for someone suffering from secondary Addisons. Other wise you can come off Prednisone but you will need 20mg of hydrocortisone a day to support your cortisol requirements.
Tapering off one and on to another is a delicate balance, specially if you have an underlying inflammatory condition. You will likely end up with a mixture of both Pred and HC both managing different aspects of your conditions.
All of this is double Dutch to most GO’s as well as most Endo’s. There is so munch mysery in the Addisons community as a result of the lack of knowledge in the medical profession. I know swathes of patients who move house in the UK whenever their Endo moves in order to remain a patient, such is the level of knowledge in the UK around this condition.
So although you are talking about your Asthma, it is likely that you will also be talking about Adrenal suppression as part and parcel of this condition.
The trick is to take ownership of the challenge and find out as much as you can. The Addisons support group in the UK is fabulous.
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