4th course of Prednisolone this year

[Misscrisps]

I was at GP last Tuesday as my asthma was very bad following a cold. Having to take my reliever 4 times every 4 hours. No temp or cough etc so given 7 days of 30mg Pred. Monday finished course, felt much worse, sore throat, aches etc. Still no temperature. Bad attack 4am with racing heart, BP 165/102, took 2 lots of 5 inhaler to calm down. Back to GP yesterday. Another 7 days of Pred plus 7 days antibiotics just in case it's an infection. This is my 4th course of Pred this year (January, May and 2 now). I had a Spirometry in July. All normal. GP says this shows its well controlled! My asthma seems virus activated? I'm just not sure how long I can keep on with this level of steroids. It's worrying me. Thanks for any advice. (I take 400mg Symbicort daily)

[Lysistrata Administrator Community Ambassador]

I don't think your GP understands asthma very well. A one-off spirometry 3 months ago doesn't even indicate you were controlled then, and has absolutely nothing to do with your control now. Asthma is variable, and even someone with severe poorly controlled asthma can have normal spirometry on a good day/on medication. A one-off good result doesn't mean no asthma, or good control, especially if done on medication. It's also not the best indicator of someone being likely to have an asthma attack (there is research on this).

With all these steroid courses in the last year, they should be referring you. You don't necessarily have severe asthma, but at the point you are now you should be getting more specialist care - see this page for details, the box under 'How many people are diagnosed with severe asthma? asthmaandlung.org.uk/condit...

I imagine your current GP probably won't refer you since they seem to think your asthma is well controlled(!), so can you try seeing someone else in the practice? Or if you can't, you can try showing them the box on that page and reminding them how it applies to you.

May also be worth a call to the asthma nurse helpline to discuss: 0300 2225800 or WhatsApp [phone] Monday-Friday 0915-5pm

[Misscrisps in reply to Lysistrata]

Thank you for the reply. My practise seem very poor with asthma. My last review with the asthma nurse was in August and I asked for a face to face as I was concerned re steroid use. It was downgraded to a phone review, which on the day turned out to be a short questionnaire via text! With the proviso that if my asthma deteriorated to book a face to face! I'll get over this current mess and then I'll see if I can get anywhere with a referral although I'm not hopeful.

Thank again.

[Lysistrata Administrator Community Ambassador in reply to Misscrisps]

Hope you can - that does sound like they're not great with asthma!

I should have said that I suggested the asthma nurse helpline not just for help with the asthma side, but also the practicalities of how to get GPs to do things they're trying not to. They will probably have tactical advice on how to approach your GP and when the best time is.

Eg while I appreciate it's probably the last thing you feel like doing right now, it might make sense to push them now while they know you're struggling, instead of when you're better and they try to use that to forget about all the steroid courses because 'you're better now so no need'.

[Misscrisps in reply to Lysistrata]

Good point. Perhaps I'll try tomorrow, when I can hopefully speak without coughing! Thanks again.

[runcyclexcski]

>>> All normal. GP says this shows its well controlled! My asthma seems virus activated?

I think you should keep pressing them about the referral, and keep asking until you get it. I had a specialist who understood variability of asthma (took me a year to get the referral). So when we needed a spirometry/IgE measurement to justify biologicals and to confirm asthma diagnosis, he told me to stop steroids and hang on for as long as I could w/o them (I managed for 2 weeks), not take brochnodilators the morning before, then take spirometry and bloodwork. Then we compared the (now poor) result to the (much better) result in the past -- IgE, Eos, and spirometry -- which was enough to confirm asthma diagnosis.

[Patk1]

I would try to protect Yr self from viruses as best u can, as they often trigger asthma- masks,handgel, viral neutraliser sprays for nose+ throat.lots of heavy colds + chest probs about at mo, and only goin to get worse thro winter.its that awful time 4 those of us with asthma+ lung disease.its been a damp summer+ start to autumn in nw england

[Misscrisps in reply to Patk1]

Thank you. I do try to avoid but like you I live in damp NW England! I've just bought some Vicks First Defence to try when I go out and a little Vaseline around my nostrils. I may have to go back to a mask for crowded places.

[Chip_y2kuk]

Being brutally honest I have 6+ a year in a good year and have done for the last 10 ish years .... I wouldn't be concerned about 4 in a year .... they are only slightly concerned now after I've mentioned it for 10 years

Having said that I'm under the severe asthma clinic and the aim (there's and mine) is to reduce my steroid usage..... however the regular steroids have been replaced with "intermittent prophylactic antibiotic therapy" (azythromycin) ... apparently certain antibiotics used over long periods actually have an anti-inflammatory effect... and I get regular chest infections so will hopefully reduce them in severity and occurrence

So all that's really happened is I've swapped frequent courses of steroids and antibiotics for permanent antibiotics (3 days a week) .... im not sure that's progress but they tell me it Is

[Lysistrata Administrator Community Ambassador in reply to Chip_y2kuk]

6+ a year isn't good but neither is 4 in a year, especially since as you acknowledge you're already under the severe asthma clinic and they've now managed to reduce your steroid use significantly. Pretty alarming they weren't concerned about you needing 6+ in a year, so glad to hear it's acknowledged now and been addressed.

However, being on frequent courses of steroids in primary care, under a GP who doesn't understand asthma, and without a referral to specialist care to see what's going on and how to reduce the usage as much as possible (ie what Misscrisps is describing) is exactly the kind of scenario ALUK tries to encourage medics to avoid - it is not fine. 4 courses of oral steroids a year is twice the number that should trigger a referral.

I appreciate you're trying to be helpful and reassuring, but it's probably best to avoid telling other users that their need for oral steroids (or anything else) is fine because it's not as many as you've needed.

[Chip_y2kuk in reply to Lysistrata]

It's only been acknowledged in the last 2 years....I kept getting told needing frequent steroids and antibiotics was "just how it was" or "the nature of asthma" by GP's... I even got told that by a respiratory specialist in a hospital .... so I disagree that its just GP's that have a lack of issue with oral steroid.

As for the op she sounds concerned that they had 4 this year and it also sounds like it's just this year.... my point being there are people who take them every day and there are people who have more than 4 courses in a year every year

I completely understand its not fine and comes with loads of possible side effects, including: brittle bones, steroid induced diabetes, adrenal problems, immune problems to name but a few .... but not being able to breathe becomes a pretty big and permanent issue too.

So unfortunately like a lot of medicine it's the lesser of two evils... and why oral steroids get the nickname "the devils tic tacs"

[Lysistrata Administrator Community Ambassador in reply to Chip_y2kuk]

Of course it's the lesser of two evils if you really can't avoid it. But no healthcare professional should be just assuming, or letting patients assume, that long-term or frequent steroid use can't be avoided or reduced without at least trying to see if there are other treatments to help them breathe.

You shouldn't have been left so long, nor should anyone, and my point was that it's not ok to leave things this way and rack up more steroid use just because that's unfortunately happened a lot to others. So it's perfectly reasonable to want better treatment when you're currently at 4 courses in a year, instead of waiting for 4 every year for 10 years or whatever.

I agree it isn't just GPs who do this, I've encountered it from consultants myself. I didn't say it was just them,but Misscrisps is currently in a situation where her GP doesn't understand why her situation needs referral and not endless more steroids, which is why I mentioned GPs and not consultants.

I have literally just been doing work on this involving reading the scientific papers on side effects Vs dose, and how to balance the need to treat asthma with the side effects. They acknowledge the need for treatment, but also don't advise waiting for more exposure and encourage appropriate referral at an earlier point, before 4 courses in a year. So does ALUK.

[Patk1 in reply to Chip_y2kuk]

Azithromycin & doxycycline both have some anti inflammatory effects in lungs

[Chip_y2kuk in reply to Patk1]

Yes I'm on azythromycin 3 days a week... if that doesn't work it will be azythromycin everyday

And if that doesn't work they will put me forward for one of the biological treatments (the other my esonophils aren't high enough for)

[Homely2 Administrator]

My gp asthma nurse had me referred to a consultant simply because my asthma peakflow remained variable despite being on fostair, so she felt that she did not understand my asthma

The doctors at my gp practice are not good at asthma, and the gp asthma nurse needs the support of the hospital to do her job.

So it is hard for me to understand how you have not already been referred.

[Misscrisps in reply to Homely2]

It sounds like you have an understanding and interested asthma nurse. Unlike mine who does her review via text questionnaire!

[Homely2 Administrator in reply to Misscrisps]

That is why you must get referred. I have a hospital asthma nurse and a gp asthma nurse. I had to ask for the hospital asthma nurse. Both have different strengths.

[JezB]

I was similar last year. I would be very careful on that amount of steroids as whilst they made me feel a lot better with asthma - Pred can cause other issues which I certainly felt. This seems a lot of doses in a year to me!!

[Acapulco1]

I was the same but have it well controlled with a combination of symbicort and montelukast.