Having spent nearly 3 years taking drugs which as far as I am concern did little or nothing to improve my condition, but caused me all kinds of distress, discomfort and put me at increase risk of lung cancer and other nasties I have decided to call an end to taking prescribed drugs.I plan to adopt a wholistic approach to self manage my own health care needs informing myself as best possible on life style, stress and anxiety management, excise diet and nutrition, breathing techniques.
If and when a proven drug appears I may well get involved.
For the minute though I think there are some pretty clueless pulmo's out there indulging their own ignorance.
Written by
Bigyogi223
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Think this is rather risky But a wonderful idea I will definately be listening carefully good luck you are braver than me
You are very brave! I wish my husband would be holistic in his dealings with his COPD. I am sure with your positive attitude and sensible approach you will find what helps you . The very best of luck, take care, lots of love TAD xx
After having gone through the medical route and finding it lacking, I can only respect your decision hun. I hope you will keep in touch with us and let us know how you are.
I am right behind you. When my doctor prescribed yet another course of antibiotics - the third in six months, I asked him: 'Why can't my immune system fight of the recurrent Hib infection?' He just shrugged and mumbled something about poor expectoration. Surely, if I did my level best to improve my health, in a holistic way, as you said, my soon-to-be robust immune system would control and eliminate the infections...!
However, I am not sure how to go about ths, and, more to the point, how to motivate myself to do so, as I have become very depressed with my illness. Please let me know how you get on!
Hi swimmer, we are all different and our way forwards might all be equally different. I have reduced my meds every slowly. I try to make sure the only thing that has changed over a number of weeks is the reduction in the medication I want to drop or reduce,if there is no observable negative reactions I come off them. You have my good wishes, life is hard enough when you are feeling depressed and probably out of control without having to deal with chronic illness.
Thanks, tractor man and blue, it might be risky but so is taking drugs with proven side effects for year simply because you pulmo a does not listen to you when you raise your concerns about their effectiveness and safety record. Or has you take the wrong dose for three years simple because he can not convert pounds and stone to kls and agin ignores you when you tell him the correct dose for your body wieght. This was the case with both the drugs I was on. He also ignored all the latest research on both drugs told me to increase the dose on both when I got an infection.
Having had enough of being treat like a complete idiot I demanded a second opinion and was very fortunately referred to Newcastle Royal Infirmary to a specialist IPF team . Result, come of both drugs from today, and lots and lots of questions about my health background my experience of IPF, and a complete reassessment of my condition. End result a very very honest response, there is nothing useful we can prescribe so let's run with nothing for now and I can live with that. I will continue to visit the RVI and always seek their advice because I know they respect me and my right to decide for myself which cause of action I will take when any decision is needed.
I have had similar experiences with GP prescribe medication so many times over the years, you can get into a circle of for example constipation, drug prescribed, causes side effects, therefore a second drug prescribed to help with side effects which in turn cause more problems. So before long you end up taking 3-4drugs just to counter each other, god knows what the effects of taking such combinations are.
I do know this,I have reduced my medication from taking about 7 tablets a day plus creams down to 2 and I plan to drop 1 of those very slowly over the next couple of months. Result to date my QOL is much improved. Good luck with you endeavours tracterman only thing I have learnt to date is take as much regular excise as possible watch your diet for triggers, mine are pretty much as expected, sugar, bread, booze, large meals, all increase coughing? I also include hemp, and advocardo oils (a table spoon of each) in my food every day which I think helps reduce inflammation. Good luck best wishes to you both and thanks for your replies.
I have IPF and only take 2 drugs.N.A.C, and lucky for me Pirfenidone,as far as I am aware they are now the only drugs recommended under the NICE guidelines,you should be seeing a specialist in IPF who would know this?Sooki
That all sounds very positive and I wish you luck with it. x
Hi Sook, I m with one of the lead specialist hospitals in the UK, the thing with Pirfenidone in the UK is there are only about 4 research centres in the country that are allowed to prescribe it and only then when the patient meets very strict criteria. So for the time being I can not have it prescribed, I am not sure I. Want it given it can cause so many very negative side effects for some people. I did meet a lady yesterday who was really impress by it so I do have an open mine. QOL is more important to me than an extended life span. All the best.
Good luck - your positive attitude will help you immensely. I only have inhalers at the moment but I did take medication for osteoporosis and heart...I discovered (on the net) I had taken the osteoporosis one 5 years too long (my GP looked rather uncomfortable when I pointed that out) - I took myself off it and felt a lot better. I took myself off statins as I just don't want to take medicine that "might" help....I do take Abs and steroids each time I have an infection but so far I am OK with them...I do worry that their effect will wear off after a while; I am looking forward to hearing how you get on with your new regime.
Hi Louisiana, we need to be our own gate keepers and stay on top of our medication and our health issues. I am fortunate in having a GP who encourages me to become an expert patient.
Hi bigyogi, what a great and brave choice. I was in so much joint and muscle pain along with other stuff that after months of insomnia and 3 whole consecutive nights of not one wink of sleep I came off three of my prescribed drugs and within two days started to feel a little better but after five days the pain had gone and I started sleeping! That was over four weeks ago and I now have the energy to excersise, my severe headaches have completely gone and the depression has significantly reduced. I still take some medication and won't change that just yet. It's interesting to find other people out there suffering more from side effects than the condition they have. Please keep us posted on your progress and good luck with it all! Regards Kissi
Well done. I'm in my 6th year with IPF and in the last stage. The only drug I use specific to this condition in Carbocysteine (mucodyne) and I am not at all sure if its efficacy and rely on my own method for dealing with mucous, which is natural and works very well (more on that to come). Meanwhile, Thank you.
I took a good look at what the mucous does when its working normally and it seems like it is a form of lubricant secreted by cells that line the airways and lungs. After its circulated it goes into the oesophagus and down into the stomach from where it joins the body's waste for discharge. So I thought I'd give it a helping hand and instead of going through these nightmare scenarios every few days, retching my heart out and feeling like death because its hard to be retching and coughing up stuff and breathing at the same time, why not go with the flow. And anyway the mucodyne didn't seem to have much effect. So I tried plain old water-lots of it. As I felt the mucous accumulating in my mouth or throat I took a small mouthful of water and swilled it around in my mouth and throat and then swallowed it. I continued to do this like 'beating back the waves of the enemy' until I felt my pharynx epiglotis mouth and other bits down there were free of the glutinous mucous. When it started again, as it always does, I washed it away again. It has done wonders for me and removed one of my major concerns in everyday living and surviving. Just to give you the background to this, I've had IPF for 6 years and am in the end stage now with 24/7 oxygen 6-8 ltrs pm and unable to stand up and down without my SpO2 dropping instantly to 74% or thereabouts.
thanks for this Simeon....I am going to try it. I am feeling lousy at the moment and trying to keep an infection at bay....I'm not suffering anywhere near as badly as you are.....do take care. I will let you know if your system works for me
I have had IPF since 2001 and am 73 years old, no medication has ever been prescribed apart from steroids (prednisolone) for 2 years at the beginning to lift me up. All I take now is 4 l/m of oxygen for about 16 hours daily as my condition worsened in January this yesr, up until then nothing and no impact on QOL.
Please elaborate. I have IPF and I'm only taking 35% hydrogen peroxide (5 drops per 8 ounces of water) to increase the oxygen in my system. My pulmonolgist also suggested I try N-acetylcysteine. Have you tried that?
I live in the USA. I've dialogued with 2 pulmonary docs. They can only say what the FDA allows them to say. They only prescribe what the FDA allows them to.
I am end stage there is no drugs out there for ipf that does any good as nothing works for me anyway there is no magic bullet but I have faced my demons and ready for my fate when it comes its not hard to do when you have no choice
I have been certain for ages that some of my medication does not help, but please monitor your condition carefully.
I have been having acupuncture treatments and I am going to a well being class which helps people with long term illnesses to cope. Hypnotherapy, meditation and yoga are covered in the course too. I am asthmatic and was prescribed a longer, tapering dose of steroids a few weeks ago, and thankfully since then I have had no cough or wheeze and not needed any bronchodilators...I am keeping my fingers crossed.
I am with you Knitter, None of the thing you have mentioned is likely to cause you any harm and from my experience that provide period so complete or almost complete relaxation. Good luck
Oh please becareful when deciding what drug's are not doing anything for us. A few years ago a young neighbour of ours was found by my wife Ann throwing pills in the solid fuel fire. Awe they aren't anything in fact a real waste of time. Our neighbour needed to go into hospital to have her heart valves changed into adult ones yes the last time this would ever need doing. I phoned my wife from work to check how the neighbour was doing. : She died after the operation. Not sure how I drove home. Yes it was our neighbours 21st Birthday and she is dead why. She as gone through this so many times throughout her young life. Next Day I went with her husband to go over what Happened with the operation. Well the operation was a success totally. However when we got her into ITU we was unable to stop the bleeding. Her bliod wouldn't clot. No I was a coward and never said anything. You see the pills that wasn't doing anything to help her was her blood clotting medication. Now my wife she as stage 4 Heart Failure and stage 4 Kidney failure plus many more. The boxes of pills boxes on a small table at the side of her 17 in total not counting the inhalers. When she is taking her AM ones I get.Dont know why I need all this lot I am sure they arecnot doing anything. Well guess what last week My wife was discharged from her Cardiac Clinic and wow today she was discharged from her Heart failure clinic. Her Heart stats went from 22% stage 4 to 58% stage 2. I would what would have happened if my wife had started to self Manage herself by doing away with pills She believed wasn't helping her. Yes I fully agree with Self managing our lives round living with long term conditions however medication which yes does come under Self Management should be left to the professionals who Have been purposely trained. Bless you my friend. We are floating round on cliud 9 now all because my wife as taken all prescribed medication xx
Hi breathless, really please for you and your wife and the way things have turn out for you. In my earlier post I explained that before taking an action in terms of stopping or reducing my drugs I took time to research each drug and it's effect thoroughly, including reading up on the latest medical research being conducted by world leading research establishments. Only then did I discuss coming off them with my GP. The drugs I am talking about are pronisolone and Azathioprine both very important drugs for people suffering from IPF. one drug can and in my case did cause anxiety and depression making daily life thoroughly unpleasant the other caused me to many side effects to go into here. In the end my choice was supported by some of the leading medical authorities in the UK.g2m-2://BRLaunch?Action=Join&BrokerServiceSuffix=%40ISL1&Build=1350&EGWAddress=216.115.208.230&EGWDNS=egwglobal.gotomeeting.com&EGWPort=80%2C443%2C8200&MeetingID=128759307&Mode=Terse&Product=g2w&UserID=987753328&UserRole=attendee&sessionTrackingId=e0-4NhDm4o9aAJJjPiJ2zUSra87fqcTo
Good on you taking control. Im under RVI after being seen by a different consultant who just gave me more med s but no tests . Ive had lots tests at RVI and complete change of attitude to get to bottom of my condition to treat correctly rather than guess work xxx
I would assume there's a doctor or physician somewhere who has IPF and has found a treatment that helps them. But, isn't it interesting that we never hear from those kinds of people.
Hi everyone, Ruth here from the British Lung Foundation. If you want to find out more about current treatments for IPF then please contact our helpline on 03000 030 555. We also have useful information on our website at blf.org.uk/ipf.
I am about the same roughly 3 years with IPF, Have been on inhalers , antibiotics steroids and Nac, Last visit to specialist he took me off everything, Just on Oxygen now, I don't feel any worse without them and no side effects
Hi again, I decided to try and be drug free because acid reducing meds had caused sever side effect which in turn lead to me having to take 2 other medications which in turn gave me even more problems. So I had to find another way of managing the coughing bouts the tummy acid caused, and after some really really unpleasant coughing fits I have learned to control the coughing by placing an handkerchief over my mouth and forcing my out breath through it. So I breath in normally then force my out breath through the handkerchief over my mouth for a slow count of five. It works for me, I have to keep that up for 4 to 5 minutes. The main thing is I am back in control without medication.
I have been recently diagnosed (18 months ago) with IPF. For last 6 months have severe coughing bouts that leave me exhausted. Any one ideas to ease/manage the cough? Also for last two weeks I have tried a course of "Pure Cordyceps Capsules"- this seems to be helping me manage my condition ie I seem to recover quicker from exhaustion. Note the Cordyceps Capsules are from Aloha Med Inc these are the most expensive ones because they are pure Cordyceps.
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