Withdrawal of some inhalers !!! Seretide etc corticosteroids ones,

What a shock to read they are to be stopping some corticosteroids, due to them bringing about infections ! Has anyone else read this ? 

What are the side effects of inhaled corticosteroids?

Using ICS especially in high doses for a long amount of time can lead to an increased risk of side effects such as:

• Pneumonia

• Development of diabetes

• Osteoporosis and fractures

• Cataracts

• Behavioural effects, e.g. sleep disorders, anxiety, depression, aggression.

ICS can also cause side effects to certain areas of the body such as:

• Hoarseness (strained voice)

• Sore throat

• Bruising

• Thinning of the skin (especially in older people)

• Oral thrush (a type of fungal infection).

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  • Hi valmac, where did you read about that .....I knew those were the side effects of steroid inhalers but there are beneficial effects as well....reducing inflammation..that's why they are used.

    Don't stop steroid inhalers without medical advice...could be very dangerous.

    Does the information you have heard about cover all steroid inhalers ...I take a maintenance dose of pred as well ..but wouldn't be still here without it.

  • Don't know why it won't let me copy the link,  I'm just getting my grandchildren ready for school, then will try and get the link, have managed to copy this.....

    This letter is for you to adapt for your patient(s). [Make any changes or additions necessary in the highlighted sections and delete any unwanted information.] Please also ensure that once you have made your amendments, any important information isn’t split across two pages, or that an instruction to continue on to a second page is added.

    Why your medicine is being stopped

    Stopping inhaled corticosteroids (ICS) in chronic obstructive pulmonary disease (COPD)

    What are inhaled corticosteroids?

    Inhaled corticosteroids (ICS) are very important medicines used to treat respiratory (breathing) conditions such as asthma and chronic obstructive pulmonary disease (COPD). These medicines reduce inflammation in the lungs.  

    Products that contain inhaled corticosteroids include:

    Seretide® (containing fluticasone)

    Symbicort® (containing budesonide)

    Fostair® (containing beclometasone)

    What are the side effects of inhaled corticosteroids?

    Using ICS especially in high doses for a long amount of time can lead to an increased risk of side effects such as:

    • Pneumonia

    • Development of diabetes

    • Osteoporosis and fractures

    • Cataracts

    • Behavioural effects, e.g. sleep disorders, anxiety, depression, aggression.

    ICS can also cause side effects to certain areas of the body such as:

    • Hoarseness (strained voice)

    • Sore throat

    • Bruising

    • Thinning of the skin (especially in older people)

    • Oral thrush (a type of fungal infection).

    If you have a type of inhaler called a metered dose inhaler, you can reduce the risk of these types of side effects by using a spacer device (picture shown) with inhalers that contain corticosteroids and rinsing your mouth out with water (and spitting out) after using any ICS.  

    Why are my inhaled corticosteroids being stopped?

    Inhaled corticosteroids have been reported to reduce frequency and severity of flare-ups (increased breathlessness, increased phlegm, discoloured phlegm and worsening symptoms), but they have not been shown to improve your lung function, or stop it getting worse. However the side effects of these drugs can cause problems with your other illnesses.

    The doctor/nurse [delete as appropriate] has reviewed your treatment and feel that your COPD could be managed without using an ICS at this time. With your agreement, your ICS will be reduced slowly (please see the end of this leaflet for details) and we would like to see you in two weeks.

    In line with national guidance and guidelines agreed by [insert name] Clinical Commissioning Group (CCG) we may prescribe another long acting reliever, e.g. salmeterol or formoterol, if you are not already using one. Long acting relievers work by reducing wheeze and breathlessness. When they are used regularly they help improve levels of activity and exercise and may reduce the risk of a flare up. It is also important to continue to take any other reliever therapy that you may be on, e.g. salbutamol.  

    What happens if l do get a flare-up?

    If you do develop a flare up and experience worsening breathlessness, increased phlegm, discoloured phlegm or your symptoms get worse, it is important to start taking antibiotics and/or prednisolone early to prevent symptoms from getting worse. Your doctor or nurse may give you (or you may already have been given) an emergency supply of antibiotics and steroid tablets to keep at home and these should be used as soon as your symptoms change, in line with your self management plan. Please check to see if you have been given either of these. You should keep the contact details of your COPD service, GP or nurse nearby at all times.  

  • Hi Valmac could you tell me if you have seen anything to say that this withdrawal is going to be policy. I have been looking at research projects where steroid inhalors were withdrawn and all of the conclusions were that the rate of infections remained the same but that in those who had the steroid inhalor removed inflammation increased and breathing became more difficult.

  • I thought research had been carried out which showed that for some people the use of long acting bronchiodilators without a steroid element can be dangerous for asthmatics .

    I used Serevent and suffered bronchospasm which was very frightening .

  • Oh I seem to have got the link, I hope, please tell me if it doesn't work, there is a lot more information here too, I've read that they will be weaning off then giving out other inhalers, but I'm already on the replacements, and it would seem I'm going to lose two of mine, Jill X 

    Why can't I paste the link ? I've copied it, I then sent it to myself via text and it worked but won't let me paste it here, is it against the rules, ? I'm pretty new here Xx 

     

  • There was a post a couple of days ago about the replacement inhalor for COPD with the steroid element removed and another long acting reliever substituted. It is not for acute episodes and is dangerous if you have asthma. As I am sick and tired of the thinning skin and horrible bruises due to fostair I am going to ask my con about it. Doubt if I am suitable because I have bronchiectasis with maybe ( they can never make up their minds), a small degree of asthma.

  • According to what I've read so far 2 of my inhalers are on the 'To be withdrawn list' seretide & Clenil Modulite, in brackets next to these 2 it says ' not licensed for Copd ' but it's dated 2014-15 ! Doctors were advised to wean their patients off and replace with others, then the next review in June 2016, so why am I and many more people still on them,  I'm very confused now, I have Copd clinic in 2 weeks so will be printing out what I've read and asking a few questions,  the replacements are listed as salbutamol and others similar, but I'm already on ventolin and spiriva [both still on the ok list] just makes me wonder if they care at all or indeed what's going on, 😕 Jill X 

  • Hi valmac, I take Clenil too. I am still googling PrescQuipp .

    I wonder what evidence they use and why.

  • I contracted (is that the right word?) asthma in my sixties and was told "It is age related asthma". I was prescribed becotide and ventalin which I have been taking ever since with becotide being substituted over the years with seretide, sybacort and for the last three years with Fostair. Iwas informed that Fostair is by far the CHEAPEST and has been adopted by doctors surgeries to bring down costs! I have never been hospitalised with Asthma.

    However, I am alarmed at how thin my skin has become as well as easy bruising. I should add that I am now 81 and I suppose I should expect it anyway. Last Autumn I kept having chest infections which resulted in a trip to Hospital to find out what was happening to me. Following a ct scan and lung exploration the consultant informed me I had bronchiectasis and prescribed the antibiotic doxycycline which seems to clear up the infection in about a week(I have one at the moment). Although I am, shall we say, aged, I am normally a very fit guy and a cyclist who thinks nothing of covering 150 -200 miles a week and still holds the East Anglian Vets 100 mile record when I was 74,75,and 76! These last few months have been depressing because I have body weakness and muscle ache too.  Is this prolonged use of corticosteroids finally getting at me? I wish there was something different other that steroids.

  • Hi Tony. First of all I think you are amazing to still be doing all of that exercise, fantastic for keeping your lungs going. The steroid inhalors are a pain and I hate my thinning skin (I am 65). Bronchiectasis is a funny thing. Very little experience in dealing with it and even consultants can't agree. My consultant would never give me doxycycline and yet it helps you. It mostly depends on which bug is in there. If you find that the infection doesn't clear get them to test your sputum as you may have a bug in there which needs a different antibiotic.

  • Hi Still standing. Thanks for your reply. When I saw the Hospital lung consultant last January she said that my sputum sample had the bug Haemophilus influenza and that Doxycycline is the best as the bug is sensitive to it. As I had another chest infection a couple of weeks ago my sputum sample again showed the same bug so another bout of Doxycyline was prescribed. I am happy to say the I feel so much better now and in fact  consider myself 'normal' again. I will, therefore, get out on the bike for a ride around my 25 mile circuit tomorrow!  I should have added that I am borderline diabetic (It's in the family genes) and I am now taking metformin twice a day with food. Obviously my cycling is helping to keep the blood sugar down to an acceptable level. It is really annoying to have asthma AND now bronchiectasis too. However, I count my blessings and 'keep calm and carry on'! My wife and I celebrated our 50th wedding anniversary last week and will 'honeymoon' in the Highlands in a couple of weeks and do some walking.

  • I think that you are outstanding. Unfortunately I am colonised with pseudomonas which is much more difficult than haemophillus to deal with. There is only one oral antibiotic which hits it and after years of taking that and nebulising other drugs I had terrible tendon problems when I took it recently. Keep cycling, stay positive, You are an example to us all.

  • Good to talk.Hope we can both succeed in controlling and managing our problems for a long time yet.

  • Hi again , I googled PrescQUIPP to see who they were.

    '  A NHS funded not for profit organisation that supports quality optimised prescribing for patients ....evidence based ' 

    Is it a private company....does anyone know? 

    It's prescQIPP ...no U

  • Hi Knitter, I too have been googling  about, as you say it is Nhs funded, when you open that link I put up earlier, and click on the menu tab ( green box in left corner ) I went to 'about prescqipp' and didn't learn much, then clicked on resources and there is a fair bit about them, latest update being the 23/3/16 but still don't understand why we are being prescribed things they have said are no longer licensed, Jill 

  • Thanks for the link Valmac....I guess they are just an advisory body for the NHS. I wonder if the BLF could find out more ....what the aim of the company is for instance.

    Food for thought 

  • Since read that it was a pilot scheme the Nhs set up in 2011, and still runs successfully as an Nhs programme, still doesn't tell us where the data/facts are from, worrying thing is that we just take what ever the doctors give us, were all just guinea pigs, although we are all a lot more computer literate nowwa days and I always research any new drug given to me, there's a great site for checking out what your taking with what for interactions etc drugs.com 😊 Jill X 

    Neither Beclometasone dipropionate nor any other low dose inhaled steroid preparation is licensed for use in COPD. Inhaled steroid monotherapy has no place in COPD management.

  • Well that's scary, I just typed into the search bar on the net, is clenil licenced for Copd, and the same with seretide, and got a big fat NO they are not 😳 X  

  • That's strange...I have asthma and COPD though

    Let's hope we get some answers 

  • The replacement drug which someone on here had been given was spiolto respimat. This is worth googling to look at what it consists of and its uses. Altogether I think that it is a tricky one. 

  • Well I don't see how they can remove some preventers and only leave us with relievers.  This is opposite to the advice given before ie to cut down the use of relievers and use the preventers more!  x

  • I ust tried to open the link and when I click on the subjects they require downloads which my system has given me warnings about.  It also says the publisher is unknown!   x

  • I am confused.com ! 😕 not with you of course but with all the medication. I have already tested out ( on myself ) what I'm like if I stop taking the Seretide, I've been on it about 3 years and I've only taken it in the mornings with the Spiriva not evenings as well as I was instructed to. The result was my breathing was so bad I could barely place one foot in front of the other.

    I resumed taking it and was soon back to what I'd call normal for me.Now I'm concerned what would be an alternative for me.

    Then there's the Omeprazole, proton pump inhibitor , I read recently that it's been linked to Dementia in people in their late seventies.I tried to stop taking it but the acid reflux was totally over the top that I've carried on with it. Bliddy hill ! I'm no good at taking medicine never have been, I need more than a spoonful of sugar! huff xxx

  • I wouldn't try adusting any of your meds until you've spoken to your doctor/consultant after following other links it's been quiet common knowledge to not only the company I came across today with this information but several other company's even on the Nhs site, we're all entitled to know what and if we should be taking a certain medication,  armed with printouts I'm going to see my doctor tomorrow, as 'coughalot' says it now contradicts what they've been saying for years to use preventers so we don't need relievers as much, it needs answers we deserve answers, it has really annoyed me that it's been kept so quiet, Jill X 

  • Thank you Valmac, huff x

  • Hi valmac, could you let us know what your doctor says about prescqipps guidance on asthma inhalers.

    I notice they have also issued guidance on gluten free foods. 

  • Yes of course I will, Knitter, I had a look at a few things that apparently are changing but heard nothing about, and on other sites too, including Nhs site, I will get back to you all, Jill. 

  • Many thanks

  • Hi knitter, sorry so long in getting back, my son & grandchildren took me away for a couple of days, I did visit my doctor armed with so many print outs from different companys even a Nhs print out, he had a read of the one, and said I hadn't needed to take them, he's taken me off my clenil & seretide, but given me nothing in they're place as of yet, he said that its been proven that they don't benefit anyone with Copd but are still licensed for asthmatics, ( which is most confusing as I have both ) the reason he hasn't given me anything in they're place is because I have the full Copd tests that I get every 6 months at the hospital on the 19th of May, so I'm left with my ventolin and spiriva, the spiriva I have is the handy-haler one, they don't recommend the spiriva respi spray ( if I've spealt that right) for Copd, I do however have my nebuliser and oxygen for as and when I need them, but no preventers at the moment, he said there are replacements but will be waiting until I've had the full set of tests on the 19th, I asked why I hadn't been taken off the now 'unlicensed  inhalers' before now, to which he said it would of been dealt with after or on the 19th of May, not much news for anyone really I'm still reading up on it, he did say that research had been done with patients using steroid based and placebos, I would imagine these patients were aware they were in the study, has anyone else been able to find out any more ? X 

    P.S I am weaning of them I should of said, not just a straight stop, Jill X 

  • NB. Neither Beclometasone dipropionate nor any other low dose inhaled steroid preparation is licensed for use in COPD. Inhaled steroid monotherapy has no place in COPD management.

    This is copied from an Nhs  site, here is the link for further and lots more information and the management of Copd and asthma, also it's an up to date link, it's pestering me due to the length of time I've taken corticosteroids ( as I'm sure many of us have ) 

    nhsgrampian.co.uk/nhsgrampi...  

  • I was weaned off Symbicort 400,it took 8 weeks,all seemed fine but on the 10th week I noticed my breathing was a bit shallow,and I didnt feel too good,so rang the nurse she said start taking Symbicort 200 and let me know how you feel,well I have been on this for 3 weeks,breathing ok now,but do have a dry mouth and a sore throat,before all this I was on Symbicort 400 and had no problems at all, why oh why dont they leave us alone when we feel well. 

  • There has been a discussion on the Asthma UK site about seretide ....some patients have been taken off it and don't know why.

    We are the people living with lung conditions I think we should get a proper explanation 

  • My GP was very up front about why his patients were being moved off Symbicort 400 and on to DuoResp Spiromax.  It is because the contents are nearly identical but its cost to the NHS is very much less.

    Any patients that are have any difficulties are moved straight back.

    This is what he told me after asking how I getting on with the new inhaler. Which is dead easy to use too. 

    HTH.  Rib 

  • I look forward to your comments Valmac after seeing your dr, all these contradictions it can be very worrying, and why are we not told half these things.........! 

    I'm due for my COPD check up next week I'm certainly going to have a long talk with the respitrary nurse.I'm going to look up spiolto  respimat now so I can discuss that with the nurse.

  • I'm on Fostair and only for the last few months so why are they prescribing it to new patients if it's not recommended?

  • Hi diesel, from what I can find out the advice on steroid inhalers was from prescQIPP...a firm that advises some CCGs . I will see what Valmac finds out from her GP.

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