I came off steroids at the end of January this year, after 4 years in total for PMR.
I have what has been termed the 100 day cough that persists - for 12 weeks and counting. I’ve been informed that I have post infection inflammation and an inhaler has been prescribed (I’m on my second). It has two drugs, a steroid and something to dilate the inner workings of the lungs.
After peak Cortisol between 7am and 8am the symptoms are less severe, but as the day progresses to night time it gets much worse (my own analysis being natural cortisol is lower in preparation for sleep, so the inflammation in the lungs goes unchecked). I’ve asked the GP whether I should take steroids short term, but the Dr said no. I have a supply of steroids in one of the drawers, quite a few in date. I’m tempted to try 5mg/day for a week or ten days, but on the other hand I could upset my adrenal recovery after four years of steroid use.
Any comments on this?
Edit: The inhaler is called Fobumix inhaler powder. 160 micrograms / 4.5 micrograms of budesonide / formoterol fumarate dihydrate.
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As you know it can take anything up to 12 months [sometimes longer] after finishing Pred for your adrenals to be back to full production… so they are probably struggling a bit with the virus.
It would be useful to know what your inflammation markers are - and that might change the GP’s mind about a short term course of steroids.
I get where you are coming from in trying that yourself, but couldn’t possibly advise you to go against doctor’s orders. 😊
I’m also reluctant to go against the doctor’s orders, and if I were to take steroids which causes adrenal ‘wobbles’ I would be in bad books. They would treat me accordingly but the reason would be recorded on my records for a long time to come.
I’ll attempt to get an appointment and suggest a blood test, and raise again the possibility of a short dose of prednisolone.
It might be worth getting a blood test… and on the result of that make suggestion again..
Had you still been on Pred we might have suggested the sick day rules… but as you say it’s not certain what affect it will have on adrenal recovery. As it’s only for a short time, probably very little, but you don’t know.. and as you say if it all goes to rats, it may affect future relationship with surgery.
If I can persuade the doctor to prescribe Pred for a short duration in line with sick day rules, what in your opinion would be an appropriate dose? Remembering I’m currently on 0mg, and have been for the past 6 months.
SDRs are for patients on pred, I suspect that you would struggle to find a doctor who would consider you at risk since you have been off pred for six months. In a study, two mg a day was considered by Imperial College London to be adequate for fulfilling the function of adrenals. So that may be a place to consider starting. But I'm not an expert,
I thought one or two, with five shutting the adrenals off being too much. I think the concern of the Drs is adrenal, hence the inhaler that’s not systematic. They see me as being off steroids and don’t want me back on them. Definitely not going off-piste.
I would caution you not to yo-yo with Steroids. If you are lucky to get rid of them count your blessing and resort to some other method of curbing your cough, I’m sure your GP and you will arrive at the right formula to ease your symptoms. Best wishes!
Coughing building up at night would definitely be an allergic asthmatic type symptom and a steroid inhaler should help but takes a while. Maybe the viral infection has triggered some sort of IgE type irritation (if that’s a phrase! ) Depending on what other medicine you’re on, an antihistamine daily for a week or two may also help settle it in my experience.
As you know, it can take up to a year for your adrenals to get back to normal and you are still susceptible during that time. From what I have read, if you have pred during that time for another reason (even a short course), you might have to do another taper. I don't think I would want to take the risk if it were me. Especially as you have a limited supply and they weren't prescribed to you for that purpose. I would stick with the inhaled corticosteroid for now. I am asthmatic and so I know that they can take several weeks to work, so you need to stick with it. If they are not working, you could go and see the asthma nurse for advice or go back to the doctor if you don't normally see the nurse.
My mention of doing another taper is off the top of my head from memory from when I used to have write the leaflets for these products, so I think I have remembered correctly. I would be cautious for the reasons that I have given.
If I were you, I would be reluctant about taking steroids again after you have tapered off them altogether. If it is any help, I suffered the so called "100 day cough" from January this year and it lasted through to June (much longer than 100 days!). All that time I was taking steroids for my PMR. I therefore believe the steroids did not help my cough in any way. I have suffered PMR for over 10 years now and cannot wait for the day when I can stop taking Prednisolone altogether (plus the other tablets I take to counteract the steroids - Lansoprazple and Adcal).
Thank you for relating your experience with the so called ‘100 day cough’, almost double the 100 days. I’ve read on the internet that this prolonged cough has a relationship with juvenile whooping cough, but that’s more Google opinion than fact.
I’m glad I asked the question before tempting a short course of steroids. I’m totally off the idea now based on the replies here. I wouldn’t want adrenal issues on top of the cough and it’s so unpredictable what could happen. When I asked one of the doctors a month or so back he instantly said NO without thinking any further. I didn’t ask why, but now I can see the implications.
Providing the course of pred is low enough to avoid suppression - i.e. under 5mg over a few weeks or much higher for up to 2 weeks it is unlikely to require a long slow taper/
No, you aren't being thick, at all. It's jargon. My fault, I wasn't thinking when I typed that. It stands for summary of product characteristics and it is the official document that describes the correct use of a medicine for healthcare professionals. The in-pack leaflet is a translation of that document into so-called patient friendly language.
Prior to antibiotics it was productive with discoloured sputum. That was approx 6 weeks ago. Now it’s a hacking cough using the examples given, less in the day time but gets worse in the evening, really bad at bed time around 10:30 and clear sputum can be coughed up later on. At any time of day I become breathless after climbing the stairs. (BTW, I was diagnosed with bronchiectasis in the right lung in Jan 2021 meaning the lung was not self clearing - I was given breathing techniques to help mitigate the situation, but in 2022 the results of another CT scan indicated the dilation of the bronchia had diminished, so I was in no need of the breathing techniques.)
I’m taking the inhaler which is delivered as a powder, and that in itself can initially irritate the lungs. I was told 2 puffs morning and night, and 1 during the day as a reliever. Im taking more in the evening as an experiment in hope of relief from the steroid content. Also taking Robitussin dry cough mixture.
It sounds like your bronchiectasis is coming well under control. It's a long-term condition that can relapse, particularly when an infection takes hold. Immunosuppression is a known risk factor, which means high doses of corticosteroids might make things worse.
The NHS offers lots of information about bronchiectasis via this link:
It says, "If you have a particularly severe flare-up of symptoms, you may be prescribed bronchodilator medicines on a short-term basis. Bronchodilators are inhaled medicines that help make breathing easier by relaxing the muscles in the lungs." I presume that's the kind of inhaler you are taking at present. They are non-steroidal.
Some doctors have tried steroids for bronchiectasis, especially during flare-ups. I looked for evidence that steroids might help but couldn't find any. This study from 2001 said:
"There are no randomised trials upon which to base recommendations about the use of oral corticosteroids in acute or stable bronchiectasis."
This study from 2018 looked at inhaled corticosteroids (ICS) and concluded:
"The review found that there is not enough evidence for the routine use of ICS in adults with stable bronchiectasis. We can make no conclusions about the use of ICS for flare‐ups of bronchiectasis, or about their use in children, because we did not find any studies."
Have to say what you describe here and in the thread sounds an awful lot like what my husband went through after he had covid. He's never been on pred but does have a long history of respiratory problems, including pneumonia regularly until he got pneumonia vaccines. In his case x-rays showed congestion in the lungs and although I don't remember the details I know he had to take several courses of antibiotics over the months. We both still take a natural kefir-like probiotic daily, started to keep his gut microbiome fuctioning when on the antibiotics. Seems to have been all right for quite a long time now, touch wood, but at the time he was also on a puffer. Provided any lingering infection is dealt with appropriately I think getting through this lingering ailment is really just a question of time, and hopefully sooner rather than later. Try to get enough good quality sleep and although exercise is good, don't push yourself. Give yourself time to recover. Keep well-hydrated. Best wishes. 🌺
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