What shall I do?

[Woofly]

I have severe COPD but frankly don't feel any better with all my medications. I have got to the point of thinking MAYBE if I didn't take anything, I would be no worse off! I am aware the majority of you will be horrified, but when you read of the possible side effects of the medication, it is quite frightening! Have any of you thought about stopping, and if you have done what were the consequences?

[hypercat54]

Every med even over the counter ones such as aspirin have side effects so do you avoid those as well? I am mild copd and know I breathe better with my inhalers but maybe you need a change of meds which will help?

I think it would be rash to stop your meds but it is your choice at the end of the day.

[wheezyof]

Hello Woofly,

Yes, I've worried about side effects of medication, with good reason. I'm one of the few who cannot take penicillin, ciprofloxacin or steroids.

Oh! My hearing has been affected by azithromycin too.

However, I do continue with medication. When I go for lung function tests I have to go without my three inhalers, I really suffer for the day. So, although, in the past, I thought they were not helping I found out that yes they help.

I have far fewer flare ups since taking azithromycin.

If taking your medication worries you I suggest talking it over with your doctor/consultant or ringing The British Lung Foundation helpline.

Any of the above should be able to help you.

[Damon1864 Volunteer]

Please don't stop your meds although it is your choice. But get some advice first don't just stop them. I'm worried in case you have withdrawal symptons so please be careful you really need to think this through. Let us know how you are doing and take care of yourself 😊 Bernadette xx

[RoadRunner44]

Hi Woofly, Your post has drawn attention to medication side effects. I am with you there as I have been left for over a year without any support since my old consultant retired. Apparently they lost me in the system) .

During this time I have been on nebulized colomycin (colistan) twice a day with no monitoring of any side effects experienced and no samples of my sputum analysed. I have for the last few months developed various side effects - dry itchy skin, restless leg syndrome, anaemia, painful joints, and tendonitis of my shoulder. I admit I have pre diabetes, kidney disease and heart problems. However doing some online research I find these symptoms could be linked to the medication I take, namely, the antibiotic colymycin and ciproflaxicine.

One knowledgeable member of t this Forum informed us that these, and other antibiotics are what are called ... black box medication and can have many side effects. I checked on line to see what it all meant. It was worrying to say the least. I sincerely believe we have to find out as much as possible about our medication to empower us. Yes, we have a choice then when more fully informed. . My new consultant has now taken me completely off colomycin and will monitor me closely from now on. Likewise I am being referred to a neurologist and cardiologist as well.

As you state you feel no better on the medication, it's time to have a good chat to your GP and consultant and explain the situation you are in and how concerned you are.

I hope you get some answers. Please let us know how you are doing. Chrys

[Hacienda]

It's like saying, "Wish I could go back in time to my old Self" That won't happen, but with our Meds they can prolong our Life span, it's how you can understand them. Talk to your Consultant about how you feel and try and come up with a plan which you should write Down and Show Him/Her. I know I probably wouldn't be here if not for my Meds, Oxygen, and Knowing my Own Body what works ,what Doesn't, It's all trial & Error, Please don't be desponded, I was so that Yesterday, Just look at my Post, These wonderful Friends here gave me the Lift I needed, and today I feel Good & Calm. Do your own Research on each Medication your Taking, Never stop taking any Hun. Love to you. XXXX C.

[Smiler1968]

I was diagnosed with COPD 2010 kept saying for years none of the inhalers had any effect...... I did stop taking them...... Not working and the side effects made my mind up. 4 months ago I was diagnosed with Excessive Dynamic airway collapse and my consultant casually told me that was probably the reason why my inhalers didn't work but I had been taking them for about 5years...... Good luck

[SquirrelsHolt in reply to Smiler1968]

OMG smiler, that is worrying to say the very least. What worries me far more because of you ,i now can do some research and see if i have had no benefits from my 8/9 years of using many inhalers. Nobody else has EVER mentioned it. Im atad concerned to be honest so thanls for raising the subject!

[Smiler1968 in reply to SquirrelsHolt]

Let me know how u get on. I never found an inhaler that DID work for me and I tried many over the years. I was even given spacers in case I wasn't using them correctly. I felt I was never believed so in a way am glad that I now have a diagnosis that explains that they don't work. Good luck.

[Chella42 in reply to Smiler1968]

Hi, i have copd for the last 7years i also have asthma and no matter what inhalers ive been on i never feel that they are helping me.and i constantly get recurring chest infections which difficult to get rid of and after quite some time of going bk amd foreard to gp he referred me bk to the chest clinic which the consultant said he was going to check see if i got bronchiectasis 3wks ago i had ct scan and blood tests and waiting for lung function tests. And another thing worring me my lips always have a blue tinge of colour i always have chest tightness and discomfort and recently been getting chest pain.ive never heard of that condition what you have just been diagnosed with.

[CDPO16]

If you don't feel your meds are helping perhaps you would benefit from a full review with your doctor.

I have very severe copd and some side effects from my medication but I know they help my lung condition although I have struggled for most of this year. At a review last month one inhaler was changed on a "try this and see" basis as many are. It has really made a big difference in that although I am very breathless on slight exertion it actually feels easier to breath. We are all different but sometimes one small tweek has an effect.

[frose]

I tried stopping mine (really stupid idea!) and within 12 hours was struggling to breathe and couldn't even walk around my lounge. I started them again immediately, and gratefully. I just needed to know if I could cope without them. I now know I can't!

[GintyFerguson]

My doc said once "you can have side effects or be a respiratory cripple". I chose side effects. However , a consultant wanted to put me on oral steroids years ago and I refused. I came through the bad patch and now dont need them anyway.

[Spacecat1]

I agree with hypercat54 it's your choice. But they are given for a reason to try and help you. I know I would much rather take my meds than think what it.

[Superzob]

I have a lot of chronic complaints and do find that taking the prescribed doses can make me feel worse. However, I have found on occasion that just reducing the dose can reduce side effects, without completely removing the benefits. Some medication, though, I cannot take at all, so I just have to accept that I might go through a bad patch without much relief.

I don't think it is a good idea to stop medication completely, because some have a rebound effect which can make symptoms a lot worse. I'm with others on this message stream - try to have a long chat (difficult on the NHS!) with your GP or consultant, and agree a plan to modify your treatment regime. After all, the whole point of medication is to make you feel better, and if it has the reverse effect, then there's no point to it!

[hallentine47]

Yes my thoughts are very similar because of a number of issues having come up which I am coinvinced are linked with meds. The result is the GP messing with ,my usual routines and I am now feeling worse. I belive that once we are into all this stuff you need to make changes very slowly and with medical support and advise. There is not room here tomlist my bits and bobs.

[lKeith]

Woofly

I have severe emphysema and wouldn't dream of messing with them, they have kept me alive for a while longer and recently I was told part of my my recent event might even be due to missing just one of my meds. Bear with it they may be doing you more good than you realise.

IKeith

[Woofly]

Thank you all for your kind and informative replies. I really appreciate everyone taking the time to respond. I shall wait until I see a lung specialist in January, (yippee finally got an appointment after waiting a year!) I will explain how I feel and the side effects I am having. I will keep you informed. xx

[Ergendl in reply to Woofly]

Good luck for January. Do let us know how you get on.

[lKeith in reply to Woofly]

Woofly

Hi again, please make sure you do. Good luck.

IKeith

[jackdup]

If you are severe it would probably not be advisable to stop taking them. I am moderate and have often thought the inhalers don’t do anything. I have tried stopping mine on a couple of occasions and although I didn’t they were of any benefit, I did notice the difference in my breathing. It was not a ‘night and day’ difference but there was a difference. Many of the inhalers, like the maintenance ones, gradually work over time so the benefit may not be felt immediately in a lot of cases and because the effects are gradual you may not realize the extent they do help.

[jackdup]

I hope Smiler does reply and clarify but my understanding is that the inhalers didn’t help because the problem was Excessive Dynamic airway collapse, which inhalers do not help for that, thus he/she didn’t get any help from the inhalers.

[Smiler1968 in reply to jackdup]

Yes that's correct lol.

[jackdup in reply to Smiler1968]

Curious, what is the treatment for Excessive Dynamic airway collapse?

[Smiler1968 in reply to jackdup]

This is all quite recent so waiting to see another consultant as mine has never seen EDAC b4. This is my 2nd nite with a CPAP machine usually used for sleep apnoea but for myself it's to keep my airways from collapsing. No more meds so far but will keep u updated.

[jackdup in reply to Smiler1968]

I would appreciate that as it is something I am not familiar with. How are your symptoms different from a person with COPD or do you know? Hope it doesn’t take you too long to get accustomed to the CPAP.

[Smiler1968 in reply to jackdup]

No difference as far as I know, I was diagnosed 9 years ago and am now breathless most of the time. I was found to have EDAC after a CT scan.

[jackdup in reply to Smiler1968]

Thanks for the reply. If you no longer use inhalers is there any treatment, besides the CPAP?

[Smiler1968 in reply to jackdup]

Waiting to find out, I hope so 🤞.

[lKeith]

RedSox

Thank you for your thoughts, I've had problems but am still around to harry people.

Keep well.

IKeith

[Smiler1968]

Good luck Woofly, let us know how u get on.