Advice please

[HoppyNurse]

In the last 3 months I have had 56 days of oral/IV steroid treatment and also IM methylprednisolone 120mg and kenalog 80 mg. The kenalog will be running out over the next week - I had it 3 weeks ago. Every time steroids have been stopped I’ve had a rebound in my symptoms and have ended up in hospital. I’ve contacted my specialist team and they have said I don’t need any monitoring and have no follow up planned until July, I was refused biologic treatments at the moment as they want me to see physios and psychologist and the consultant - although nothing has been arranged. I’ve been off work sick since October (8 admissions between 5-9 days in length) and the longest time I have been out of hospital is 12 days. I’m really worried that without anyone monitoring, or the steroids being slowly reduced I am going to end up with other health issues. I’ve got a sickness meeting with work next week and I was hoping to present them with a plan for treatment - but it doesn’t look like that’s going to be possible and I think that my work are questioning my suitably to work in that area - I am a children’s nurse in A&E. Does anyone have any suggestions as to what I can do?

[Poobah]

HoppyNurse I'm so sorry you're having so much trouble with your asthma, even more so as your specialist team appears to be so cavalier.

I thought that any steroid treatment over five days had to be properly reduced over time in order to avoid rebound. Your pattern of treatment shows it's not working and as such the specialist team should step in as your asthma control is in crisis.

I take it that the specialist team doesn't look after your treatment when you're an inpatient?

It's difficult to be assertive in these circumstances but I would hound them in order to bring forward my appointment stating that you have to demonstrate to your employer that everything is being done to get you safely back to work.

As for your meeting next week, ask the manager to put in writing their expectations re your asthma and attendance and give a copy to the specialist team for their records. Hopefully they will see the need to step up and monitor things more closely and to seek a permanent solution for you.

I work for a government department and know how closely attendance is monitored. I always have to push back, pointing out the irony that my employer wants my health to improve while systematically cutting the health services that I rely on to maintain that health. A reality that cannot be argued with. And never hesitate to ask your union (RCN) for assistance if you think your job is in jeopardy.

I feel quite frustrated at the way you've been treated and wish I had better advice.

[EmmaF91 Community Ambassador]

If you’re not getting anywhere regarding the steroids with your team try going to see your GP. Steroid weans are meant to happen if you’ve been on high dose for 3 consecutive weeks, and most GPS are more than willing to help with that. I’m not sure how kenalog weans down as it’s IV but if you find you get a rebound affect when you stop steroids then it does sound like a slow wean is needed

It’s worth chasing up with your team regarding the physio and psychologist, esp if it’s a case of no bio until you’ve tried this and whilst you’re waiting you can’t really work because you’re too poorly etc.

It’s horrid when you don’t have a supportive team, but maybe try calling your cons secretary and asking for a plan to present to work. Explain the situation to them etc. I usually find if I’m having issues with a con, the secretary can organise what I need (plus less time pressure so more time for you to explain to them the issue etc).

Other than that speak to your union and get some advice from them. And any meeting take someone you like/trust in with you for moral support if nothing else

If you’re not at a spec hosp for your asthma atm ask for a referral. If they refuse to refer on the physio/psych front see your GP (as I think they can refer) and maybe ask for a referral to a different secondary hosp for a second opinion. I think doctors forget that we have to work and have a life around our conditions sometimes!

I hope they get you organised with something and good luck with work.

[Hidden]

Hi there, I was going through exactly the same thing as you and was more often on corticosteroids than I was off them - a lot of the time with no weaning. They’re supposed to keep track of the number of times you are on steroids by giving you a record card but nobody ever told us that and I only discovered this fact after I developed posterior sub capsular cataracts in both eyes- directly caused by high dose long term use of steroids. Nobody ever even told us that this could happen.

Last year alone - post surgery (which we had to pay to have done privately as the cataracts were so bad & the NHS waiting lists were too long) I was given Kenalog 3 times within 10 months.

I have now been commenced on one of the biological treatments for SREA but only after we had other doctors/consultants lobby for us in order for me to be given a chance on the biological treatment,

Don’t give up and good luck with everything👍

[Denae011]

Hi there I also had a similar problem to you. I am on the biological therapy now though. Also ask for a referral to occupational health through your work. I did this and they were really good.

[Kiiam]

Hi sorry to hear you are having so many problems. Just wondering if anyone has thought to check your cortisol levels. After numerous doses of steroids the adrenal glands can ‘go to sleep’, and take some time to ‘wake up ‘ which is a possible cause of your repeated visits to hospital/and or need for steroids. With low cortisol you will be more prone to asthma exacerbation, for all sorts of reasons . It has happened to me , and it was not something my GP thought of .. I had to point it out. It can take some time to right itself, unfortunately mine has never woken up, but caught early you have a good chance if this is at all behind your problem. ... just a thought. Best of luck with everything, and I hope things go well for you

[HoppyNurse]

I have asked about that - the advice from the consultant was to get a level checked locally and if it’s low take 5mg pred!

[Lysistrata Administrator Community Ambassador in reply to HoppyNurse]

Just to add that it's very dependent on the time of day - really needs to be 8am for a cortisol level. The problem also is that while a low level indicates a problem, a normal one can also disguise issues especially with secondary adrenal insufficiency. I don't have massively low ones but they don't respond to stress the way they should, which I found out with a short synacthen test - and I need my steroids! It seems to be a bit of a blind spot with a lot of drs - really they should have referred to endo if trying to get you off steroids when you've had so much.

Sorry to hear that they're being so generally useless with the asthma - I have been lucky to have good employers, because in my experience even the specialist teams often don't seem to grasp that we need to actually have a life and work (and you've had it much worse!) Hoping you can get somewhere - I agree with what Emma said.

[HoppyNurse]

So an update for you, I have got hold of the specialist tertiary team, they initially advised getting bloods done including a cortisol level and of low to start pred 5mg daily. This didn’t really answer my question so I went to my local team - who I am always admitted under and who gave me the kenalog, they don’t want to get involved given I am under tertiary care, and have emailed the team and they have told them I should continue on 5mg pred - I haven’t been taking pred, until I have been seen in clinic - currently my clinic appointment is in July! So at the moment I’m no further forward! I’m am going to my GP in 2 days hopefully they will be a bit more assistance.

[HoppyNurse]

So... cortisol came back ok, but I’ve ended up back in eosinophils on their way back up! Kenalog was given exactly 4 weeks ago! I knew I would get a rebound of symptoms but no one wanted to do anything! This time I’m needing oxygen which is new! Desat to 88% in air!