if it helped with breathlessness? Any common unpleasant side-effects I should know about? I have had bronchiectasis for a few years (and other chronic illnesses) and recently, for the first time, I have been very breathless, especially in the mornings, and despite exercises, I cannot seem to clear my lungs properly. I have not wanted to start using inhalation medicines but this is my latest prescription, as Mucodyne didn't help and just made me very drowsy. I am so depressed about all this as I am also battling with the DWP and last month have had my ESA Support benefits chopped to WRAG and this week have to attend a work information session with a CV in hand. I last was fit to work in 2004! I think I am stressed out about the whole lot, health, DWP, being fit/unfit to work and all the big changes that have me dragged down and worrying so much.
Any help anyone? Thanks,
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stillmovin
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Hi stillmovin1, l am on Spiriva at present, no side effects at all but then it does'nt seem to have done anything at all!! lungs still feel partly full of cotton wool,so then l was put on carbocisteine, which has seemed to have made any difference either, the only thing that seems to be helping me is my own set of exercises and the breathing techniques.
Thanks for your help sue930, sorry for delay in replying, I am off to see the chest consultant at Sidcup now to ask him for a further supply of Spiriva. Not that there is yet a big difference, as I have only been on them for about a fortnight, however, I do prefer this to taking tablets (although I am also taking 2 x 375mg tablets of Mucodyne too). I think I have to give all of these things more of a chance, from reading the various responses I have been receiving on this forum. I agree about the exercises. I have been doing the ones that are in the BLF booklet 'For People Affected by Lung Disease' and also a bit of walking for about 5 mornings a week. Only a short walk but I am keeping at it. I am hopeless with the breathing techniques though. I fall asleep during them or get really fed up when nothing comes up after huffing and so I lose my motivation to do them. I also find that all of this: breathing, exercises, walking, managing medication, takes me through the morning and up to lunchtime, so half the day is gone! If I have places to go, or things to do, then the breathing management goes all lop-sided and again, I get frustrated with the whole regime! I am not a patient person, as you may have guessed by now!
Best wishes stillmovin
Hi, My husband uses Spiriva for a long time and we haven't noticed any side effects. Good Luck. Perhaps the BLF helpline (click on the red balloon) could help advise re: benefits etc.? Kind regards, TAD xx
thanks sue930. How long had you been on Spirova? Do you have bronchiectasis? I really don't know what is going on with my lungs! I have never had this 'asthma type' behaviour. I am doing exercises but maybe not enough. What exercises help you? I need to get up phlegm which doesn't come up and it seems it is all stuck in my airways. I also use a Flutter which doesn't do diddly-squat either! Thanks for your quick response by the way, you are the first at the post!
hi stillmovin1, l have been on Spirova only since end of march this year so perhaps not very long really.I cannot say what l have got they just told me Copd, dr mentioned Emphysema and l asked what the difference was between that and copd and his reply was "nothing,they are the same thing" which was wrong, l have since found out thanks to this site that copd is an 'umbrella' term that cover many different respiratory problems, all l have been able to glean from the surgery l attend is that l am at Moderate stage.l do several different exercises, Abdominal breathing, pursed lips breathing and 'huffs' the huffs l find help to clear my chest somewhat, the other exercises are step ups, stepping onto a step with one foot then the other then down with one foot then the other, the better you feel the quicker and more of them you get to do, another exercise is a very gentle jog on the spot and l mean gentle cos its more like a fast walk on the spot but again the better you feel the faster and more you can do, l make sure l push myself just a little to improve lung function but not too much that l start to panic because of not breathing properly, l always try to remember what a member on this site said "blow as you go"another exercise l do is alternate knee ups,from standing position bring on leg up bent about as high as hip or what you can manage then down then the other leg the same, if you are feeling really good you can go faster, l keep a note of what l manage to do everyday so l can see the improvement over the weeks,and if on a bad day l fall back on the amount l am not gonna cry about it, always tomorrow.Hope this all helps.X
Thanks sue930 that's a great help to me. I do some exercises too but have to be careful about too much of anything and knee exercises, especially as I have joint hypermobility syndrome. This was why I was turned down at a local hospital for Pulmonary Rehab. I am not getting far with getting much phlegm up though, despite huffing and blowing and pursing lips, etc. This is why I had to start the Spiriva. It is a good idea to keep a note of what you do, though, I think I will start to do that soon as it can help keep your motivation going when you compare what you were like previously to what you can manage later. One thing I find a real bother is fatigue. I do sometimes have late nights in front of the pc, I admit, but even when I don't, I feel tired out by the afternoon. Take care and keep up all the good exercising. Blow as you go...must remember that one...
I have asthma and copd. I was put on Spiriva earlier this year and it has made the world of difference to me. Its like the difference between night and day. I had an extremely severe and prolonged violent cough and lots of thick mucous I couldn't quite get rid of it all. I found that I had to take the mucodyne for a couple of weeks before the mucous began to thin down and break up, which along with the Spiriva subdued my cough. I still cough a lot on exertion and have to take my time. I am surprised that you found the mucodyne made you feel drowsy. What I keep getting reminded about by my GP and Physio is that pulmonary disease is exhausting, so could it be that that is making you drowsy. I sleep about 3 -4 hours during the day. I don't want to do that, but I am utterly exhausted and it just seems to happen. Different things work differently for different people, but I would give the mucodyne another go. You could also call the BLF helpline on 03000 030 555, and they will talk you through all your problems and offer you advice. They are brilliant and will talk to you as long as is needed. They will also give you advice on your benefits. Take care. Hope things improve for you soon. hugs xx
Thanks huggs. I am thinking carefully about what you say re Mucodyne, as I only took it for 3 days...not much I know, but I started to stagger a little and slur my speech a couple of times. I am very very tired every day and have developed dark marks around my eyes however, I cannot sleep during the day as I have acid reflux and lying down would mean having to go without meals. Do you take Mucodyne as well as Spirivina? I am already on a lot of epilepsy meds and Omeprazole too, so wondered about taking so much additional medication. Perhaps I should go back onto Mucodyne and give it a chance, however, I would, at first anyway, just choose between one or the other and see what happens at this stage. Appreciate your kind advice and I will call the BLF helpline about the other stressful matter.
You are right to be careful for taking new medication seriously and cautiously. If I were you I would phone up my local pharmacist regarding your experience with it. Ask for the pharmacist as they really know their stuff. It may be that you are allergic to it, so it would be best not to take it until you are sure one way or another. I also have epilepsy( 4 different types), acid reflux (omeprazole 20mg) and my inhalers are Seretide 500mg, Spiriva 18mg handihaler, and ventolin(also called salbutamol.) My epilepsy meds are tegretol and lamotrigine. See, our medications are practically the same! I also take mucodyne.
I have had to learn to sleep sitting up, and, have managed it, although I never thought I would. It helps with the acid reflux, and coughing and breathing. I have found that since starting with the Spiriva I have not had to use my ventolin nearly as much. However, it took around 10 days of using it before I noticed a slight improvement, which was due ( according to GP) to me having the copd with the coughing and breathlessness so long before doing anything about it. I would stick with the Spiriva, but leave out the mucodyne until you have had a medical professional tell you that you are allergic to it. When you take a lot of medications it is usually checked on the computer by the doctor, and then a pharmacist, but I suppose sometimes things can go through unchecked. Good luck and please phone the pharmacist, just to make sure about the mucodyne. Take care and good luck. hugs xx
thanks huggs. Wow! our ailments do cross over don't they! Thanks so much for the sound advice about the allergic issue. And many best wishes to you too. xx
Hi again stillmovin. Considering our similar ailments, I forgot to tell you that I am waiting to see if I have bronchiectasis also! If you want to private message me any time, please free feel to do so. Please stick with the Spiriva, give it a fair chance because it made such a difference to me. You only usually need to take one puff a day so its not a lot to remember. Don't do what I once did......I was taking some of my medication one night when the news was on and was going to take my Spiriva as well. I got so distracted by the news that instead of putting the Spiriva capsule into the inhaler I swallowed it along with the other medicines! I now make sure I take it at a time when I am not taking anything else. Take care and be sure to let us know how you get on. hugs xx
OOPS! haha! Shouldn't laugh but I can see me doing that too! Will probably need to private message you in the future about all of this - so many thanks.
Glad it gave you a bit of a laugh. I told my Dr what I'd done, and she was killing herself laughing and thanked me for cheering her up. LOL I am doing something daft or the strangest things happen to me that nobody else experiences. I am sure they must somewhere. I hope. lol hugs xx
Have you tried the humour posts in the category section? Most are hilariously funny. Mine may make you weep! Only kidding.
Hi huggs and stillmovin, have almost done it too although l usually start to shake it ...being on seratide as well which l always shake before use!!! having Fibromyalgia means l get what we all know as Fibro Fog which means we can get a little confused and forgetful and when l say 'a little' l am being very conservative and polite. putting the marmalade back in the oven, forgetting house keys,wondering why l am on the bus!! l try to make a list of what l need to do everyday then l forget where l put it, same with the shopping lists!!! hate it when someone says " oh well you're getting older,what do you expect" because it is not that at all, sometimes feel as thro l have dyslexia as well. On the other hand...l can laugh at it, l just wish others could too!!
Hi Sue, hee hee hee. So pleased I am not the only one to admit all the daft things that I appear very capable at! I am also on Seretide, but it is in the form of a powdered accuhaler which is easier to use. Each accualer has 60 doses and there is a dosage counter on it which automatically goes down each time you use it. When you have only 5 doses left the numbers turn red to remind you that you need to renew it.
I also have this foggy, disorientated thing going on at times, which in my case is due to epilepsy. Last week I put my bra in the fridge for some strange reason. It was well chilled!
As long as you can laugh at your mistakes Sue, it doesn't matter what anyone else thinks. You know the reasons, and if you laugh out loud and say something funny about it, (when you are outside and people are nearby), then I find that mostly other people laugh along. I have got to the stage, that I don't care any more what people think. Those who matter to me know the truth, and that's what is important. I am waffling on again! Best wishes Sue, and keep well. hugs xx
Glad I'm not the only one, although you didn't do it, you nearly did! LOL I'll let you into a little secret, I have actually done it 3 times! Despite all my planning and things. Part of the problem I think is that I have epilepsy and am vague and disorientated at times, so I see I have to take a capsule and just swallow itl! The first time was just sheer distraction. I bet loads of people have done that. ha ha ha, Take care, hugs xx
I confirm what huggs said about sleeping sitting up. In hospital in March, I was lying in bed, when the nurse came (at midnight!) and told me to sit up. She said I couldn't recover well if I was crouching (her words). She put action to words, by pushing the button of the bed to raise the head rest.
When I was about to be discharged, I asked teh nurse about a bed frame, because I don't have a hospital bed at home! She contacted the physiotherapist and she delivered me a bed frame. I adapted two cushions lengthwise and I sleep upright with no problem.
I think you can ask your GP to refer you to the pulmonary nurse ( a good move, if I were you). Then nurse can then contact the physiotherapist to give you a bed frame free.
In this way, you can sleep without having any reflux or any mucus coming up and making you cough. This is your mission for the next ten days!
I was prescribed Spiriva 2 weeks ago and the difference is unbelievable. Still out of breath a bit when I run the 400 metres. No, joking aside. I feel a lot better in the mornings and as the day goes on it just gets better. I play golf a few times a week and have never been out of breath in the last few rounds. I did not want to use an inhaler but I thought give it a try, I did and it's working. Hang in there and I think you may see how good it is .
Thanks robbo1952 great to hear you have had good results! You sound like an outdoors person, which is definitely a good start for COPD! I will give it a try and see what happens (maybe I will take up golf one day!)
I have only just gone onto Spiriva ( about 9 months ago) but have had Bronchiectasis since a baby LOOOONG time agao I think they give you Spiriva once your breathing gets worse and you need it...although I find it makes my mouth very dry so will be asking my cons when I see him if there is an alternative long term broncodilator .
Regarding you not finding the flutter useful, you may be like me, unable to blow into it hard enough to make the little ball vibrate in the way that you should , as I don't have enough 'blow'
Hi Sohara, I meant to say to stillmovin1 that she might find she is much more thirsty than usual. I know I am and carry a bottle of juice or water with me wherever I go. It was awkward last week, because I had to go to a funeral and I obviously couldn't drink out of a bottle during the service.! I made sure I drank plenty of water before I went in though. I can just imagine the faces of people if they saw me reach into my bag, take out a bottle and start drinking in church. hee hee hee. Take care, hugs xxx
HaHa! huggs, it would have been even stranger if you took a swig from the bottle and burst into a verse of 'Jerusalem'! (I don't mean to be disrespectful but it does sound funny...!) stillmovin1
Pleased you are all having a good laugh at my expense! LOL. We have to laugh when we can, and fortunately I can find humour in most situations, which does help a lot. It was a strange funeral anyway, and as I live on a small island I knew most of the people there. Some of them are really high and mighty, you know the sort I mean and as I was sitting near them, that's what made me want to get my bottle out! Oh I know its naughty, and there was no disrespect. All the men wore kilts which was very nice and I got lots of nice cuddles which was even nicer. Take care, hugs xx
I use Spiriva18 with no side effects but I seem to tolerate most medication without side effects.Maybe down to my earlier life of bad habits,smoking,drinking etc.lolGood luck!D.
Hi FarmerD - what is your particular type of COPD/asthma, or whatever, and is the Spiriva helping you? How long have you been taking it and when did it kick in? Just interested to know others' experiences. Thanks. Take care.
I have severe emphysema,been taking Spiriva for 9 months it,s a long term accumulative medication so it.s difficult to know if it works.I also have Seretide500 and salbutamol nebuliser and inhaler plus maintenance steroids.The nebuliser gets me through an exacerbation although the main thing I notice is the steroids,if I go below 20mg per day I can,t function.D.
I have been on Spiriva 18mg for the past 2/3 years as I have bronchiectasis and emphysema. There are no side effects from my point of view, but at the same time I cannot see that it's of any benefit! To me it's just a ritual that I go through every day and I don't feel any different if I miss sometimes. I personally believe that there is no relief for the diseases which (and others) have. Deep breathing, exercise etc., can help a bit - that's if you're up to it in the first place - but that's about it. I see some people with Asthma say that Spiriva has helped them? That's entirely different to what you have, so it does not apply. For all those on here that keep saying it is - COPD is NOT A DISEASE! It's a collective term for chronic lung diseases.
Hello Nikkers (good name). Thanks for your input. I will give Spiriva a go and if in my case I don't feel it has any effect, I won't stay on it after a month. No point in using something that ain't working after all! Take care.
I have now been on Spiriva for about 6 months without any side effects. When I first started taking it I spoke with the pharmacist after about a week as it seemed to be having little effect on my awful cough and copious amounts of phlegm. He said that with most people it doesn't begin to have an effect for about 3 weeks . My cough totally disappeared at about this point ...but it also coincided with me stopping smoking.
At a later review GP mentioned that Spiriva doesn't reach its maximum effect/benefit until you have been taking it for 3 months ! ...so it may be worth sticking with it for longer than a month.
Most members on here seem to give very good reports of Spiriva.
I am a pacifist, but if anyone tried to take my Spiriva away from me I'd murder them! It really has made such a difference to me. I cannot rate it highly enough. The only side effect I have noticed is that I am thirsty all the time, and have to carry juice or water wherever I go. That doesn't bother me, as drinking plenty of fluids is essential anyway. It does seem to take time to feel the benefit from it, so stick with it. hugs xx
It's just another inhalor,don't know if it works I just do ti.Mucodyne made you drowsy,are u sure it's that?,I wish I had it years ago(they are so SLOW in some areas ,)anyway it almost cured me,not having so much wheeeeeezzzzzy all the time,so check it out that it is that making you drowsy, iy works.
As for the depression......I found it was caused through having to fight to get my Medicine,environment and no support. Docs not giving medicine because hospital doc subscribed it ,or did not fit in their limited budget,or different drug company's name.i found it so exhausting ,I then became anxious, shout,,No more drugs please.as then I would be a candidate for more of their toxic medicine,instead of fixing the problem,very invasive. Ashamed of their behavior.
Spirivia is not for immediate breathing issues. Its main use is to stop the disease from getting worst. It does not have steroids which on long use carries its own baggage. Great for me as I am diabetic. One must stay away from smoking, pollen and assorted polluting airborne particles. Even the barometer can effect us. I also use advair, I rarely need a fast acting steroid medication. Best we can do is make what we have left in lung capacity to be the most efficient. I struggle to get on & maintain a cardiovascular exercise program.
Shame you get the headache sharon18, but at least you state it is the only side-effect. I have heard plently of positive things about this Spiriva so I wll continue with it for longer. Already on it for 2 weeks now and I'm being patient. I am also on Mucodyne again, after jacking that in 4 days later! I have to learn to be patient...All the best.
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