Resuming my medication’s status quo ante…

My GP has prescribed Diltiazem and Phyllocontin in their pre-hospital doses. The hospital doc cut them, Diltiazem by half and then all, for no reason that I was given (in fact, deleting it from my list, done shortly prior to discharge, seemed to me to be no more than a whim), Phyllocontin by half as he said it had become toxic. This isn’t unusual, as Phyllocontin’s therapeutic dose and toxic dose are very, very, close.

Losing the Diltiazem makes it utterly impossible to stabilise my heart rate, which means much of the time I’m tachycardic.** This is not Continue reading

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Any new developments in COPD?

A question from my search-engine slush pile (and it’s a long time since I’ve typed those words, because nothing new is coming through), “anything new on COPD?”.

The simple – indeed, only – answer is a resounding No. Which is the reason I have, at least for now, stopped writing about it – everything I know is now on this blog.

There have been no really Continue reading

Depression in COPD…

Depression, in chronic illness like COPD is understandable. However, what a lot of people don’t know is that it can be caused by their medication. (But – whatever you do – don’t stop taking it!)

Theophylline, and its derivatives, like Aminophylline (Phyllocontin Continus), can cause vitamin B6 deficiency.

B6 helps moderate the function of Continue reading

COPD and smoking… Don’t!

Another question from my search engine slush-pile “will my COPD stop if I stop smoking?”

No, it won’t, it’s yours for the rest of your life.

However, stopping smoking will ensure that the treatment for your COPD is more effective than it would otherwise be. But, on the other side of the coin, continuing to smoke will make your COPD a hell of a lot worse, far more difficult to manage, and shorten your life. And that life will not Continue reading

COPD and inhaled steroids…

I’ve been claiming for some time now that some people coming to me for advice are under-medicated, and now we have confirmation. What I’ve seen is probably the tip of the iceberg, too.

The MHRA (Medicines and Healthcare products Regulatory Agency), has warned that GPs are placing themselves at risk of legal action by prescribing inhaled steroids as a single-drug therapy in COPD, with new figures suggesting almost 200,000 patients remain on inhaled steroids alone. (source: Search Medica.)

Inhaled steroids, alone, are wholly Continue reading

Managing COPD…

Another search-engine list question “how long would I have before my COPD get…”

I’m choosing to believe that the missing word is “intolerable” or maybe “too severe for me to function normally”. Actually, it could be almost anything, but I suspect I’m in the ball-park.

The progress of COPD is different for everyone, but it depends on a number of things, not least your life-style. If you smoked prior to being diagnosed, and are still smoking then go Continue reading

Don’t be a passive patient…

Another from the search engine list…

Will I die from taking COPD medications?

No, of course not, but you may die from NOT taking them.

No drug is entirely without risk, but the risk is of unpleasant side-effects – the no free lunch syndrome. Any medication is a balancing act between the benefits and the side-effects, and as long as the former exceeds the latter, we’re on a winner. Right now, having taken my morning meds at 05.00, I feel like shit, but if I hadn’t taken them I know for sure I’d Continue reading

Why have I got COPD, I’ve never smoked?

This is another question from my search engine listing.

First of all, it’s a common misconception that you have to smoke to develop COPD – you don’t. However, COPD doesn’t just appear out of the blue. For example, I have COPD and I’ve never smoked. I do, though have two conditions, asthma and bronchiectasis, which I’ve had since age 2, which with time and deterioration have become COPD.

COPD – Chronic Obstructive Pulmonary Disease – is a portmanteau Continue reading

COPD Feedback Needed…

For those of you coming to this blog for COPD information – and I know there are a lot of you – I’d appreciate a little feedback, please.

A couple of months ago my CFC-containing Beclometasone (a.k.a Becloforte), inhaler was replaced with the CFC-free Clenil Modulite. This contains the same drug, so my response to it should be the same, but it’s not.

The first problem is that it’s horribly sweet, for some reason (and that seems worse when using a spacer), but for me the bigger – and unacceptable – problem is a dramatic increase in sputum production, to the extent that, first thing in the morning, I feel as if I’m drowning. Other possible causes, like infection, have been ruled out/eliminated, as have environmental factors.

This may be due to the natural progression of my COPD (there is no cure for COPD – it only runs one way). I’ve NEVER smoked, so that’s not a factor.

I’m inclined to the view that Clenil Modulite is the culprit, and that’s where you come in – I’d like to hear from anyone with a similar experience of this delivery system, or any other problems arising from its use. Thanks.

Drugs for COPD…

Another response to what others are looking for here, and not finding. Obviously, I can’t recommend drugs for COPD beyond my own experience, but I can tell you what I take, and tell you a little about them.

First, the tablets/capsules:-

The mainstay of my meds is Phyllocontin Continus (aka Aminophylline SR – a bronchodilator). I take 2 225mg tablets every twelve hours (05.00 and 17.00). The timing is vitally important with this drug, as the difference in blood plasma levels between ineffective, the effective dose and toxicity is very small (ditto with toxicity, too), and every 12 hours is the optimum period. Side effects for me are nil, but I have very few problems with drug side-effects – but see ** and the Update, below. My advice, though, for any drug, would be to not go looking for problems, and don’t check on side-effects before you take the drug, otherwise you’ll find yourself looking for problems where there aren’t any, and maybe creating them. If they make you feel odd, or ill, then you can check, but bear in mind that your body will adjust to the drug, and many side-effects are temporary. NOTE: It is vital that the patient is maintained on the brand of Phyllocontin Continus on which they were first stabilised – the literature is very insistent on this.

I also take Angitil SR 180 (Diltiazem), a 180mg sustained-release capsule, again every 12 hours, at the same time as my Phyllocontin. Note: sustained release, and modified release mean the same – the drug is released at a controlled rate over a period. Angitil is a smooth-muscle relaxant often prescribed for angina, but it also has very beneficial effects on the smooth muscle of the respiratory system, and it’s a very useful drug in COPD – I’d be a whole lot sicker than I am without it, as I found out, recently, when I ran out.

I take all my morning meds at five in the morning. This is so that, when I finally get up, around 08.00, they’re in my system and I’m ready to go.

Finally, I take a PPI (Proton Pump Inhibitor – a drug that inhibits the production of gastric acid). This is Pantaprozole, 40mg, prescribed to treat Gastric-oesophageal Reflux Disease (GORD), a problem that is very often associated with COPD. I take this once a day, at 21.00, thus the effect, which lasts for 12 hours, will take me safely through the night, when GORD is at its worst. You may find you’re advised to take PPIs in the morning – if you have COPD, ignore that, and take it in the evening. Sleeping on a bed wedge, to raise the upper part of your body, also helps with GORD.

Inhalers:-

Salbutamol aka Ventolin – a short-acting bronchodilator, taken at need – it is almost impossible to overdose on this inhaler (compare the vastly bigger nebulised dose if you doubt that). I would have said totally impossible, but there are too many idiots in the world! Two puffs, on rising and whenever I need it. At home all my inhalers are used with a spacer device, for more efficient administration. IMPORTANT NOTE FOR UK READERS: Generic salbutamol inhalers are NOT as effective as Ventolin, and I don’t care what NICE claims – some chemists still dispense Ventolin because of this, and are worth seeking out (and, of course, in hospital pulmonary function labs, the gold standard is Ventolin, not some shite generic imported from Romania for 3p!). May cause an elevated heart rate, but otherwise no problems.

Ipratropium bromide aka Atrovent – a long-acting bronchodilator that also takes time to kick in – 2 puffs 4 times a day, on rising and approx. every 6 hours. No problems.

Beclomethasone dipropionate aka Becloforte** – high-dose inhaled steroids. 2 puffs 4 times a day, as above – note that at this level, systemic problems, as with oral steroids, will occur, so carry a steroid card and try to watch your weight or, as I have, you’ll balloon! Do not believe your GP if you’re told there are no systemic problems – GPs don’t know everything and the literature is quite clear on the subject; you can check it out for yourself. Becloforte, which contains CFCs, is currently being replaced with Clenil Modulite – same drug, same dose, no CFCs.

**Now CFC-free, the current equivalent is Clenil Modulite 250.

Salmeterol xinafoate aka Serevent -another long-acting bronchodilator. NOTE: when prescribed this inhaler it is vital NOT to stop taking your inhaled or oral steroids – deaths have resulted among people who have. Again, not all GPs are aware of this; hospital clinics are, though. 2 puffs every 12 hours, or as close as I can get – it’s not critical. 4 times a day at need.

Odds & Sods:-

Codeine linctus – cough suppressant. This is the only cough suppressant that actually works! You used to be able to buy it OTC until the junkies discovered it – now you can’t, so if you rely on it, as I do, make sure you never run out. 10ml as needed. Constipating.

Amoxyl aka Amoxycillin or Amoxicillin- antibiotic, 500mg every 8 hours, round the clock for 7-10 days, as needed. I have been buying my own Amoxyl for over 8 years now, and my respiratory health has never been better. This is because it’s impossible to get an infection flare-up treated promptly these days, without submitting a sputum sample to be cultured – which takes a week, which I spend getting worse. Then I’m likely to be prescribed whatever drug is in favour that week – depends which rep has been to the hospital. Some of the modern antibiotics, while arguably more effective (they’re usually described as cleaner, whatever that’s supposed to mean), are more likely to affect me adversely and, as has happened, put me in hospital.

The antibiotics I find most effective and least harmful are Amoxyl, obviously, Septrin, Augmentin, and Erythromycin. Ciproxin at a pinch – it makes me feel crappy, but it’s not dangerous.

To be avoided at all costs – it’s put me in hospital twice, and a third time left me with gastric problems that took months to clear up – is Distaclor MR. The drug itself, Cefaclor, is harmless, so it must be something in this particular formulation which, maybe, reacts with something else I’m taking (I take over 20 drugs in all, not all for COPD, so the risk of interactions is always there). You may ask why I keep taking the bloody things – good point. It’s because my GP is an idiot – I keep telling him how dangerous it is, he makes a note and then forgets and, the last time he prescribed it I was completely out of it and didn’t realise what I was taking. Now, I have the information sheet on the wall, so I don’t forget!

You may want to consider some form of analgesia, too, as COPD can be painful – not a lot of people realise that. Paracetamol is OK, but 30/500 Co-codamol is better (that’s 30mg codeine, 500mg Paracetamol – prescription only, though you can buy 8/500 OTC). Anything containing codeine is constipating, and in my experience products like All Bran make the problem worse. A few pints of beer twice a week works well, and is far more fun… NOTE: The maximum dose for Co-codamol, either strength, is 2 tabs 4 times a day – this is governed by the Paracetamol content. The maximum dose for codeine is 200mg a day,  and as codeine can seriously depress the respiratory system, it’s not wise to exceed it.

NB: May 8 2013 – analgesia now Tramadol, 100mg 4 times a day, plus Paracetamol.

As far as side-effects are concerned, those I’ve mentioned are those I am aware of. The problem is that I have had moderate to high levels of meds for 62 of my 68 years** – I’ve never known what it is to be drug free – so it’s quite possible I may be experiencing side-effects and not know it. I have no basis for comparison. Of late, due to dramatically worsening health, I have had to re-evaluate my view of side effects. Taking all my meds into account, I am now of the opinion that I might not have ME/CFS at all – everything under that heading can be laid at the door of my medication’s side-effects. That would also account for the reason I found it impossible, for 10 horrendous years, to be taken seriously. The question of why it didn’t occur to anyone to point this out to me remains unanswered.

** At the age of 2   I developed severe asthma and bronchiectasis, the result of almost simultaneous whooping cough and measles, either of which, on its own, was capable of doing a number on my lungs – both together and, to use a technical term, I was fucked. I’ve never had more than about 50-60% lung function, even with my meds maxed out. It hasn’t stopped me leading an active life, though, until the last few years (and it’s my legs that have failed, not my lungs) – and were it not for the sometimes high levels of activity (even damaged lungs can be strengthened) I’m pretty sure I’d be a lot worse than I am – my doctor says I should be, anyway. NOTE FOR DAILY MAIL-READING PARENTS – get your kids vaccinated and stop being bloody stupid! Measles and whooping cough screwed up my life, caused me to miss about 30% of my schooling and lose almost every job I’ve had as a result of excessive sick leave – is that what you want for your kids?

With COPD, and its precursors, like chronic asthma or bronchiectasis (I’ve little sympathy for smokers who have caused their own COPD here and, who, of course, have contributed substantially to mine, until they were stopped last year), a decent sex life can be problematic. Women, and girls in my yoof, find constant coughing, wheezing, and hawking up pounds of crap a turn-off. The latter, of course, is unavoidable, and should always be done in private – coughing and wheezing you’re stuck with. Ah well… I wonder if women have the same problem with men?

One final thought – some GPs believe that one or two bronchodilators should be enough for anyone, which is rubbish. The action of each of these is subtly different; they’re not all doing exactly the same thing in the same way. The above regime was arrived at after a long and arduous 3-day trip through the Pulmonary Function Laboratory at the local hospital, and all of it is necessary. I’m alive and functioning only because of this high level of medication, a fact that’s brought home to me if I ever run out of just one component.

Some docs also believe you can get by on inhalers alone. I think this idea is wrong-headed in the extreme. Obviously, people vary in their response to drugs, but I believe that main medications should be oral – Phyllocontin and Angitil in my case – with inhalers as adjuncts. I’ve tried the alternative – inhalers only – and it doesn’t work. Not for me, anyway.

For COPD-related depression (and in other respiratory illnesses, see this post.