Weaning off Sirdupla 250?

[LittleZebra]

Has anyone ever been asked to wean off their steroid before being seen by a respiratory team? I have been on Siedupla 250 two puffs twice a day for a long time now plus Spiriva Respimat 2 puffs once a day since the beginning of the first lockdown. It has kept my asthma pretty well controlled. In the Summer at my first face to face review for a long time it was suggested that I try to reduce it very gradually. I did try to do that which was O.K. for about 3 days and then I started to feel distinctly tight before time to take my morning dose so with the agreement of the Health Centre I put it back up. Recently I had another review with a very nice nurse I have not seen before (the health centre is in a state of flux and my GP has recently retired). This nurse helps out the asthma nurse who didn't have any appointments free until January. I mentioned to her that I sing a lot and frequently suffer with a croaky voice which I wondered could be being contributed to by my inhaler. I had previously rung the nurses on the helpline who helpfully suggested two inhalers which might be more voice friendly. The nurse I saw said she would ask the asthma nurse what she would suggest and she suggested a repiratory team referral. I was really shocked just now when I received an e-mail which said that they would see me but I would have to wean off my steroid before hand. Has anyone been asked to do this before from such a high dose. Bearing in mind that it took two years to find a combination inhalers which would get it properly under control in the first place and when things go pearshaped it happens pretty quickly with me. I would love to be able to go back to the time when I just needed the occasional salbutamol but I am scared of going back to the time when I would have to take ludicrous amounts of Salbutamol and still having to go to hospital or at least onto oral steroids when it wasn't enough. I have spoken to a nurse on the helpline who thinks that maybe there is a bit of a misunderstanding somewhere along the line and maybe they just want me to stop it briefly in order to have Spirometry. I so hope so! Sorry this is so long and rambling. I suppose I really just wondered if anyone had come across this before and how it worked for them?

[Lysistrata Administrator Community Ambassador]

Hi LittleZebra, I'm with the nurse on the helpline with this - it sounds like crossed wires! It seems odd and dangerous to ask you to wean off and go with nothing until you see them - which I assume isn't going to be right away! And I've never heard of anyone having to do this before.

Is there someone you can contact at the hospital to ask about this - who sent the email? Was that from the GP nurse? It sounds like there might be a bit of a Chinese whispers going on here so contacting the hospital directly might be best.

I wouldn't do anything until you're sure that's what they mean, and even then I'd be wary and ask them why and what has happened when you've tried. I think stopping it briefly for spirometry sounds a lot more sensible!

[LittleZebra in reply to Lysistrata]

Thank you Lysistrata Yes the e-mail was from a nurse at the G.P. practice. I replied telling her what I am taking which she asked me to do and asking whether they had said why they wanted me to do that. She did get back to me to say she would reply when she was next in work which is on Monday. I agree, thinking about it must surely be a crossed wire. it just freaked me out because I think I still feel a bit of trauma from experiences in hospital when it wasn't controlled before. Constantly having to justify myself and then been made to feel like a nuisance for ringing an ambulance 'too many' times during that very hot summer when that is precisely what I had been told to do when I had taken 10 puffs of ventolin to no avail.

[Lysistrata Administrator Community Ambassador in reply to LittleZebra]

I agree with eleanordigby - it would freak me out too, even if I rationally thought there'd been a mix-up somewhere! I still get worried sometimes that someone might take away a medication that helps me, and I'd go back to even less control.

I hope you get this resolved soon and your appointment isn't too far away - and is helpful!

[eleanordigby in reply to Lysistrata]

I think you’ve hit the nail on the head. You’d think tho it would occur to the nurse that advice can’t be right 🙄

no wonder you’re feeling as you are, LZ - I would too - here’s a hug 🤗 x

[Poobah]

Chinese whispers definitely. I'm wondering if they want to test for eosinophils, which can be reduced by taking steroids, so they don't get a true picture (according to one of my consultants). But it could be to do with a spirometry test. It would be best if you spoke with the hospital once you have an appointment date, in order to discuss any preparations they expecto, as well as your concerns.

I had to give up singing once I started using Spiriva - I couldn't hold a note in a bucket. I've been off LAMA inhalers for 15 months now and my voice is much better. Basically, the medication affects the vocal chords on the way to the lungs.

[peege]

I totally sympathise LZ, it sounds utterly ridiculous to ask you to do this - particularly in winter! I hope something sensible works out very soon to put you mind at rest. All the best, Peege

[ccccc]

Hi LittleZebra

You usually only stop taking an inhaler before an appointment if it's for a spirometry or a reversiblity challenge test (this is when you are given a small amount of a substance that triggers a reaction in your lungs to see how sensitive your airways are, with a spirometry done after to measure this). You don't normally wean off an inhaler before your first appointment. I would definitely try to hear first hand from the hospital if this is the case and why they want you do this, as they may have one of these tests in mind but it just hasn't been conveyed to you.

[LittleZebra]

Thank you for your lovely replies everyone. I actually had a phone message to ring them this morning to make an appointment. I have one in February (the first available). I mentioned my concerns to the nice chap who rang me and told him exactly which inhalers I take and he said he would ask the consultant what he wants me to do. Hopefully it will be something slightly less drastic. I had a spirometry test once before but they didn't tell me to stop my inhalers beforehand (I did ask) and I was feeling a lot better then anyway after a horrible Summer. The only thing that showed was a little bit of air trapping which they said was consistent with asthma. Because the test was O.K. they didn't do reversability testing although the letter said they would (my best peak flow is a lot higher the one on the chart they use- maybe because I sing?). I wish they had done because I think it would have been useful. Maybe next time. I sometimes wonder if the fact that my IgA is low has any bearing on my asthma. My white cells are also a bit low at the moment and, as I was shielded for some time I am still taking precautions and haven't knowingly had even a proper cold since 2019. My Gp's are not at all concerned about my slightly duff immunity so maybe it truly isn't an issue.

[Fenfisher]

hi I have recently had to go for lung function tests I had to stop meds beforehand, as a result found it difficult to do tests and was very wheezing afterwards now waiting for appointment with consultant to see if on the best meds

[Pipswhips]

What i do is ring up your gp and ask to speak to an asthma nurse. If ask what is about just tell them you are having problems with your asthma.They will probably get one yo ring you hopefully if not ring 111 and see what they say.

[Pipswhips]

I never stopped my steriod inhaler for a spirometry test and i have quite few and asthma nurses never told me to stop it eitherThats why i suggested you ring up andask yo speak to an asthma nurse

[Popplemoggy]

Hi there, when I had a respiratory referral and required a spirometry I was asked not to take my steroid inhaler on the day of the apt so that they could do the test without the influence of the steroid in my lungs and get a true reading of my lung function/capacity. I took my inhaler with me just incase I needed it. My thinking is that perhaps there needs to be clarification regarding what you have been told.

[Eosinophili]

Hi, I have never been asked to do this before tests but I have only been diagnosed for over a year so maybe it is a new procedure? Hope this helps. My advice after my experiences, no harm in double checking with the professionals as they can and have been prone to saying the wrong thing!