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British Lung Foundation
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ReIuctance to try new inhaler!

Have been advised to try Symbicort 200 as my breathing is getting worse but have read some awful reviews of this med regarding side effects, some of which have left people with lifelong health issues despite coming off of it. I'm not usually a scaredy cat when it comes to things like this but must admit am really scared to give this a try. Anyone on this and how have you found it, good or bad tesults? I want to hear both sides please!

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I have been on this for 10 years and have been fine with it. Symbicort is one of the most common used preventer meds and it totally safe otherwise it wouldn't have been passed for use.

Every med has side effects but if you do get any it is usual to get only the common ones.

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Thanks for your kind words Bev. I did the dreaded and googled and have now scared myself to death! I wish I hadn't now!!

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Aggghhh not Dr Google! You will go from a mild headache to dead in 3 clicks :) x

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I know and Ive read this so many times! Stupid me! My problem is that I have had so many instances over the years to question the professionalism of professionals that I don't believe half of what we are told is good for us and ours. I've seen enough of this on this site let alone what my family have gone through, but I do see where you are coming from, thank you Bev x

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You are very welcome Annie. Like I said many of us are on symbicort and it suits most of us so don't be afraid to use it too. x

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Hi Annie, I gave you all I know, I have heard nothing from anyone else. As I understand it, it is compiled for the individule and I have only been on it it a very short time. I will try to let you know if I feef like popping off suddenly but so far it is going as I reported in the first place and I am breathing a lot easier. day and night. New Ventolin arrived tody but the last lot hasn't been touched yet. I'll keep you informed of course.

Cheers for now - Piers

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The inhaler you spoke of in your pm and now isn't Symbicort. However am so pleased you you have been prescribed something that is working so well for you. Long may it last! Regards Ann

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I'm quite surprised actually Ann, as this stuff seemed to work from the moment I tried it but for how long it will remain as efficient is anyone's guess. I seem to be building up a stock of unused Ventolin and Tiotropium inhalants which I must give back. I'm old school as well and I don't like waste, I live in West Sussex and have not found a sensible disposal source through which my little stock will be used rather than destroyed. Hope you are enjoying a relaxing day in this very moderate climate. Best wishes - Piers.

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Thanks Piers, yes, this weather is lovely, just nice and warm without being stifling! Just in time for the children to go back to school! Happens every time, it rains and they get stuck indoors - back to school and the sun shines! Three of my grandsons got to the seaside yesterday at least, two others had a picnic out in the countryside and my youngest lives by the sea anyway!

Have a nice day yourself. Best wishes Ann

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Hi Ann, Ive used Symbicort for about 30 years and have had no problems whatsoever, apart from my voice going down a bit but I don't see that as a problem. I'd advise giving it a go. All medications have to list every possible side effect however unlikely because if they didn't and something happened to someone that could be attributed to that medication, the drug company could possibly be sued. So it can look scary reading it but it's always a balance of risk and Symbicort is pretty good. It has all the side effects that steroids can give you, but those would only occur after years and years of taking it since it's local and mostly going into your lungs, not directly into your whole system. A little will get absorbed but not so much and it's much less strong than, say, prednisolone. I wouldn't be without it :)

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I understand what you're saying O2trees and do have experience of prednisolone as my daughter was on and off it for years with Ulcerative Colitis. I know not to expect that because we are talking inhalers where the steroids are not expected to have the same sort of effect but some of these reviews I have read are pretty grim. Example, putting on excess weight, losing hair, increased breathlessness, bone and muscle aches, migraines, seizures, to name but a few and it's got me seriously scared. I don't want to suffer with breathlessness but I would rather that than be left with some of this! I do appreciate that I won't know this unless I try and I do thank you for your input but some of these side effects are exactly what my daughter suffered and it didn't help her at all in the end.

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But your daughter was on pred Ann, not a local inhaler - and even then these side effects aren't inevitable. Ive been on pred since beginning of december and only now able to reduce (3mg today). Ive had it on and off since my 20s and I don't have weight gain or puffed up face, glaucoma, diabetes, only a very low level of osteoporosis which I would probably attribute to the pred but I don't take any meds for it.

I have been terrified of the side effects of steroids as all through my teens my father took mountains of pred - he had a galloping version of lupus and had lots of side effects. But almost nothing so far for me. So I understand the fear due to having seen what may have happened with your daughter but I'd encourage you to take the leap - if your breathing is getting worse, then its not likely to improve on its own and life with well-managed breathlessness can be pretty fine :) I know I may run out of options later on - Im borderline severe/very severe, like 2Greys below. I really like his reply to you. Suck it and see - you can always review it later and stop or change to a different one if necessary :)

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I know you're right and I will seriously think about all this - as you say I can walk away from it if it doesn't pan out! Many thanks for your input, most appreciated!

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Steroids are like the Royal family. There are literally thousands of them. The sort of side effects you are talking about are the type body builders take....illegally.

The ones in our meds are not generally, 100% steroid. They may be steroid based but more usually they have steroids in small amounts as an added ingredient....all are safe for most to take as long as it's medically prescribed and the dose isn't exceeded.

Again, like the Royal family, you have to really ask, can we live without them?

If you were to arrange a local, fund raising event and a lesser Royal asked to come along and support you, wouldyl say no? The same applies to your steriids. You are sob, steroid based meds can help sort that out, can you afford not to take them?

I would always give them a try and then make up my mind.

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Thank you very much for your input but actually I beg to differ - these were reviews of symbicort not anabolic steroids which I wouldn't touch with a barge pole. The side effects suffered by most of the 210 people reviewed were awful and - a lot of them described the fact that although the medication worked very well for their asthma and copd, the side effects were too harsh for them to withstand the treatment.

I have used flixotide and seritide, both of which gave me severe leg cramps but I would willingly have continued with them if it had helped with my symptoms. Sad fact they havent. I went back to using flixotide at a higher dosage but it has made no difference so we are thinking a change of the steroid may help. I'm not afraid of taking inhaled steroids, I just want to be sure of what I am doing, hence the search which we're all agreed I shouldn't have done! 😁

Loathed as I am to raise this somewhat controversial issue again on this site but I am a Royalist so I find having a Royal Family enriches my my life. Sad but true! 😀😀

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Oh, never apologise to me...just come out and say it. The only reference I was making to annabolics was the weight lifters but I'm sure most of us on BLF, realise that the steroids we take are not annabolics. When I said about the Royal family, I was referring to the overall heading...steroid..,.so many different types with different uses.

I, too, am a Royalist, even though I come from Cornwall, so there again I appreciate their different approaches to life.

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Okay I get you now! Obviously another senior moment! Thanks for your opinion!

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😂😂😂🤣💪

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Hello Anne31

" I was taken off Symbicort an onto forstar.. Which didn't suit me at all. So I insisted I was put back on to Symbicort thankfully I am now back on it. And the only side effect I get is a deeper voice..lol for you who are old enough to remember..I sound like George Raft.lol ..hope you give it another try Annie31..X Megan...."

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OMG! I can see his face now! I've got to give it a first try yet! Thanks

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This is worth a read:-

fda.gov/Drugs/DrugSafety/uc...

"FDA Drug Safety Communication: FDA review finds no significant increase in risk of serious asthma outcomes with long-acting beta agonists (LABAs) used in combination with inhaled corticosteroids (ICS)" (20 December 2017)

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Thanks Pete, will do!

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Hi Annie, I have used Symbicort for about 9 years now and I've found it to be very good. Wouldn't want to be without it. Majt 😄

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Thanks Majt! This is what I am hoping for!

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Hi Annie, what you have to bare in mind is that any review, whether for medicine or packaged holidays, will always attract negative reviews, people that are satisfied rarely post positive reviews. All you can do (excuse the pun) is to suck it and see.

Side effects are personnel and vary between people, just because one person has a reaction to it does not suggest that you will be the same as them. Some people are just plain hypochondriacs and complain all the time, are you going to let them influence you?

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I know you're right 2greys!

it's just a bit frightening! Perhaps I should just suck it and see as you say!

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I've been taking Symbicort for a while for COPD and I feel like it works OK. I also use Spiriva and, sometimes, Ventolin. None of them work as well as I would like. But, as for side effects, I have not noticed anything bad with Symbicort. As for the deeper voice that some have mentioned, I would say it is important to rinse your mouth out well when using Symbicort.

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Thank you Robin, there's only one way I'm going to find out!

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Never did I like it Annie..if it doesn’t suit you go and get it changed asap. I did years ago. Xx

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Thanks Fran x

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All meds. can have. Many side affects. It's just the med company's way of covering them selfs. Against claims. I just wish they. Worked better. I've given up on relievers as they do not do a thing for me. Well good luck and take care.

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Thank you for your reply and all the best to you too!

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I lost my voice using it occasionally but the main side effect I experienced was awful calf cramps. Other than that, it worked well.

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Thanks for your input. Cramps I can put up with, already do with meds I'm on, even if they are very unpleasant!

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Been using Symbacort 20 years ans sill here. 2 inhalation’s per day

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Thanks for your reply, I'm feeling a bit more optimistic about changing now!

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I've been using symbicort for 13 years at a very high dose and I've never had any problems. I find it very good

hope it helps

lejaya

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Very pleased for you that it works so well for you!

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I have used this a lot over the years-no problems.

Dan

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That's great! Thanks for replying!

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We're all different, and that's why there are so many different inhalers on the market, but the Symbicort Turbohaler was the only one of 5 I tried which I could get on with. I seem to be allergic to the propellant in aerosol inhalers - the Turbohaler is dry powder, but Symbicort is available as an aerosol if that suits you better.

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Yes, you're right we are all different so I will have to put my sensible hat on and at least give it a try!

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Hi Annie

When you google you need to be very careful which sites you look at for information. Avoid Wikipedia like the plague because anyone can post to its articles and add all sorts of misleading information.

Before you go on the web read the patient Information Leaflet thoroughly at least a couple of times. If you are still not certain get someone else to read it to your behalf. Also side effects although unpleasant are not necessarily permanent but can be short term while your body adjusts. Remember when your doctor prescribes medication it had been approved because the benefits far outweigh the cons.

On the Web stick to sites such as the BLF, NHS and those of governments like the one recommended by PMRPete.

Regards

Andy

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Yes, sensible advice and ones that I already knew, but I still went ahead and searched! Silly me! Thanks for your input!

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Hi - I wouldn't be without my Symbicort and after 10 years have no discernible side effects. When trying it do keep in mind that it can take 2 - 3 weeks usage before the full benefit of the steroid component is felt - this is because it is a micro dose so takes a while to build up. As Symbicort is a combined inhaler you will of course get the benefit of the beta-agonist from day one. I almost gave up on it when fist prescribed as I felt it was about the same as taking my Ventolin (blue) inhaler, but then the nurse explained it to me and I'm glad I stuck with it. i rarely use my blue inhaler now - in fact I think it must be 2 or 3 years since I last used one. As with all inhalers though, if after a few weeks regular use you feel it doesn't work for you then ask to try a different 'brand'. There are many options out there and what suits one person may not suit another.

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Hi there, thanks for your reply. A benefit from the beta-agonist to begin with would be welcome!

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I have been on symbicort for a good 8 years with no side effects. People react differently to meds, I also take thyroxine and Metformin and they all seem to get on together. Worth a try if it might help your breathing, you can always stop if you react badly to it.

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Yes that is true! Thanks for your input and the input I have received gives me more confidence. It'll be like quitting smoking again, I have to choose my day to start! 😁

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Annie31 - I can't see any reference to where you found all this frightening information!

Perhaps you could post where you obtained it?

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I will try and find it agsin.

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Hi Pete have found it, can't do a link not computer savvy like that!

I searched for symbicort reviews, and this was amongst the answers:

SYMBICORT: Side effects, ratings and patients comments

askapatient.com/viewrating.asp

210 patient reviews, makes for quite nasty reading and I was compelled to read them all unfortunately! 😕

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The problem is that generally only people who have experienced side effects will bother to complete these reviews.

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You seem to be right there mrsm. I've read them all and it's only a tiny minority that seemed to get on alright and only a few of them were totally satisfied. Does make scary reading though and still nervous but I think I have to give it a go as my quality of life is slipping away from my quite rapidly and I am becoming very deconditioned as a result. I'm afraid to do much as I don't want to be SOB all the time. I've fallen into that trap! 😢

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Many thanks for that link, looking at my medications I should be long gone!

Symbicort review sumary:-

askapatient.com/review-summ...

quite interesting! "Average patient opinion of SYMBICORT: somewhat satisfied"

Pete

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How can anyone be somewhat satsfied? In my book something works or it doesn't!

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Annie31 I have been on Symbicort for at least a year. I do not read the side effects, as if I do I would not use any medicine. Ignorant, I am sure. But, for me, a way I deal with using what makes me feel better. I hace tried I believe every in haler out there and Symbicort is the drug which make me feel like I have no breathing issues. I love how it works for me. Everyone is different I know. My new drug insurance tried to put me on various other inhalers. I fought them until I got my Symbicort back. There are two kinds of Symbicort available in the states. A pill which breaks and releases the powder and a canister with an aeromist. I find, by far the most effective one is the aerosol canister. Easier to use and medicine more prevalent. Good luck with what very you choose to do. Have a great day.

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Hi Olga, thanks for your remarks. I understand where you're coming from, that was my mistake in that I read and research too much!

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Hi Annie,

I changed from Seretide to Symbicort about 5 years ago and have been happy with it. I had awful side effects from Seretide which included cramps and a horrendously itchy and angry rash on my arms. I’ve never regretted changing my medication and would recommend Symbicort with confidence. I hope that helps.

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Yes, I couldn't get on with Seritide. I've always been prone to cramps ever since a child but they were horrendous on that med. I have known such pain and I had it in my thighs and hands which had never happened before and were longer lasting as well. I put it down to the salmeterol component because I don't suffer any side effects from the flixotide it's just that as a preventer it doesn't do anything at all! I have remembered as well that I got itchy arms as well! Mine were particularly bad on the inside of my wrists! Strange I had forgotten that until you mentioned it.

Thanks for your vote of confidence in symbicort. I will have to try it and see.

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Hey Annie, I've been prescribed Symbicort for at least 15 years, on the wrong regime and strength for the first half. I have COPD, stage 4 now and in all truth it has never seemed to do me either good or harm! It's a minute quantity of steroids so don't worry about that. The point I wanted to emphasise as it has already been made is it is very, very widely prescribed because for many people it provides good efficacy with very few, very low rates of side effects. I'm quite sure you are far more likely to be squashed by a bus than suffer any lasting damage from trying it out. Don't let silly scaremongers put you off looking for the optimum treatment for your condition. I hope the many positive comments here help you to stop worrying and keep working with your medical practitioners to find the right thing for you, talk it through with them and give it a go!

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Than you MrsGif, much appreciated!

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Hi, l have come to know that every medication has some sort of trade off. I've also learned that l had to quit reading all l could find out about the S ide effects of my medications; because if l didn't l would never take any medicine. I believe if there had been reports of significant % of side effects, the provider would have mentioned it to you. Best wishes to you! Sometimes we just have to take a leap of faith!

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Yes, I believe you're right! Thank you!

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Hi Annie31, I have been on ‘Symbicort’, for about 20 yrs now, it is probably the best around, but also the most expensive! so, in fact that a lot of docs are trying to get their patients on to, not so good, much cheaper, versions! So definitely go a long with your particular doctors advice! I don’t know what I would do without mine and definitely wouldn’t change for ‘less superior!’ I have not, knowingly, ever suffered any ‘side effects’ at all in all those years! I hope this helps you. Wishing you well🙂. Cassa37

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Thank you Cassa47! Your views are important to me and I appreciate the time you have taken to answer.

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Symbicort changed my life for the better. I feel like I am asthma free . No more hospital visits and do not need any rescue inhalers anymore. Can participate in sports and everything. No side effects.

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Thank you for your input! Much appreciated!

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Oh yes I also had hand issues when my fingers would lock but never associated it with Seretide. I don’t have it with Symbicort

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Hi Annie31,

I have been on symbicort 200 and 400 at various times, at first I did get a dry mouth after taking it, so I would recommend gargling some water after inhaling, otherwise I haven't had any other side affects.

Symbicort is really safe and symptoms I have found are minimal.

You can get more side affects from taking a tablet these days than the inhaler, so I would still take it, give yourself time to get use it, say 3 months and if your symptoms do get worse after 3 months go back to your doctor. You can found my way helpful.

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Hi there, I did actually start using it ten days ago. Side effects have been quite insignificant to none now, so can't grumble on that score. Whether it's effective or not, not sure the jury is out on that one! One day I feel a difference and the next might be completely the opposite. On those days I feel this is a waste of time and then inexplicably my SOB is much better and not using reliever as much. I can't make it out, but what I don't like is the up and down of it. Perhaps it's early days but I would have thought it would have proved to work or not work by now and most of the time I cannot go anywhere nearthe twelve hours between dosage without using a reliever. I suppose I shall just have to wait and see!

Thanks for your comments!

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