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Atrial Fibrillation Support

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Barb1 profile image
Barb1
â€ĸ35 Replies

Most of us are on medications that we don't really want to be on but have learned that we need to be. One of my meds (not for AF but that's not really important) was changed recently and I noticed did not last as long (eye drops.) I mentioned it to my GP and she said that Public Health England was gradually changing over all medications, starting with most expensive ones, to cheaper generic ones. The GP's are not directly involved. The pharmacists are being given the instructions. She said that as my eye drops were not on the banned list, she would ask for the specific not generic one but she expected that that would change in the future and she would not be able to direct the pharmacist to do that. Should we be concerned?! Should we have been told about this. I think that it is underhand and something that should be made more public. What does the Forum think?

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Barb1 profile image
Barb1
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35 Replies
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10gingercats profile image
10gingercats

I first noticed this with some meds. about a year ago.If you press you may get the 'original' ones but for how long?

â€ĸ in reply to10gingercats

Mine frequently change packaging which for some would be very confusing. Often come from different countries too

UScore profile image
UScore

what does it mean exactly, changing to "generic"? Is it an actual change to the medication, or a change in the manufacturer?

Barb1 profile image
Barb1

To be honest I'm not sure....it's just cheaper.

CaroleF profile image
CaroleF

UScore I think a generic medication is one that can be made because the patent on the branded version has run out. As far as I am aware the actual (or active?) ingredients of the drug are the same as the branded version.

No doubt someone will correct me if I am wrong.

As for the OP's question .... I do think transparency about the changes being made is important, but as far as generic versions of a drug are concerned I suspect that it doesn't really matter to most patients. (no doubt there may be exceptions where, eg, there may be fillers that disagree with a patient)

Eg. generic paracetemol is both the same as, and much cheaper than, branded versions and Petroleum Jelly is essentially the same as 'Vaseline'. I know these compounds are simpler than the sort of medications prescribed for AF, but the principle remains in my view.

Barb1 profile image
Barb1â€ĸ in reply toCaroleF

Good reply but there should be transparency so that patients understand. Otherwise they are worried....I think.

CaroleF profile image
CaroleFâ€ĸ in reply toBarb1

I agree that transparency ought to be a guiding principle where any decisions like this are made. I suggest that pharmacists are the people best placed to explain to individual patients if any changes have been made, to explain the reasons for that and to answer any concerns. However, I suspect that pharmacies are also (like GPs and hospitals) under time and scarce resource pressures.

I always open and check the bag of medications handed over to me by the pharmacist before leaving the shop. On the one occasion I was given a box that was different in appearance from the usual one I asked for, and was readily given, an explanation with which I was quite satisfied.

Maybe, those who collect medications from a pharmacy themselves could make a point of asking whether any changes have been made ... and if so, why?

Barb1 profile image
Barb1â€ĸ in reply toCaroleF

I did and was told it was cost led. Plus that in most cases there would not be a problem.....most?!

momist profile image
momistâ€ĸ in reply toCaroleF

I think everyone should open the bag and check the contents in the pharmacist. It's not unknown for errors to be made, either in dosage levels or even the 'wrong patient'! Also, if ordering multiple drugs at once, you might not get all that you are expecting if one is delayed. That's happened to me, and the missing item had to be hurriedly re-ordered.

Hi Barb,

This should have happened years ago. Hundreds of millions of pounds of taxpayers' money wasted on non generics. I wouldn't know the difference between generic and branded tablets anyway, once out of the packet.

Same chemicals, a lot cheaper.

What concerns you in particular?

This is arguably the fault of doctors prescribing non generics. In hospital the Pharmacists will not allow it.

Barb1 profile image
Barb1â€ĸ in reply to

I suppose that I am sceptical because I was prescribed a drug whilst living in Belgium and when I was back in UK they wanted to change it to a cheaper one. But I was stable on the original and it had taken a while to make me so.

Jollies profile image
Jollies

My GP was keen to ensure that I stayed on one particular brand of calcium channel blocker so has always been precise on the prescription. The pharmacist says she is right to do so as there are variations between brands, some being less effective than others.

â€ĸ in reply toJollies

Generics must have bioequivalence but not necessarily therarapeutic equivalence. In most situations this will have negligible clinical significance, and the general imperative to divert limited NHS funds away from big pharma seems appropriate. It is a question of priorities and seeing the bigger picture, in my opinion.

I had a change from one manufacturer of one drug to another of the same drug and the effect was dramatic and potentially dangerous. Both types affected my mind, but one just my memory and sense of time, the other sent me into a deep depression quickly. I didn't feel suicidal but I was well on the way. This may be rare, but we should at the very least be told of any change so we can know and be involved.

Barb1 profile image
Barb1â€ĸ in reply to

Totally agree Koll

â€ĸ in reply to

Koll

Gosh I find that worrying. Was it a cardio med? Were both definitely non generic?

Is it even possible for two separate companies to share the patent?

I seem to get different boxes of the same med on a regular basis, never questioned whether a generic and not been aware of any problems.

Main problem for me is loading my dosette box when the tablets keep changing shape and colour. When you have 13 tablets a day and 5 are white, small, round, flat, unscored and mostly unmarked and you can't see them so well because after 10 years, you still don't pass the test for cataract removal, and then the cat knocks the filled but uncapped box on the floor. And then next month some of the meds change shape, colour and the markings are so small you need a bright light and a magnifying glass to read the numbers........

And no, I'm not ready for someone else to fill my box: I may be crazy occasionally ( or mad as a sack of badgers, as we say up north) but I'm not daft. 🤡

Barb1 profile image
Barb1â€ĸ in reply to

Badger, I believe that the pharmacist can dispense the meds in ready filled packs ie Mondays, Tuesdays etc.

â€ĸ in reply toBarb1

Yes Barb, that is always an option. Thanks.

â€ĸ in reply to

Yes it was one of the anti-arrhythmic drugs which always works quite well for me with regards to the heart rhythm, but I am very sensitive to it in the head. Both were branded.

Yes, it was scary.

wilsond profile image
wilsond

Another symptom of a sickNHS.I shall raise it with my GP

Buffafly profile image
Buffafly

My asthma inhaler has been changed but I was asked if I was happy with it so I think I could have changed back if not.

This should be a good move on the whole but there are some companies who have bought the rights to the generic formula and are cashing in by raising the price enormously so you may be getting a slightly inferior product at little saving to the NHS. This is what we should be fighting against 😠 One for Hidden

â€ĸ in reply toBuffafly

Buffafly

I had no idea. That seems so wrong. I wonder what sort of deal between the regulator and the drug companies has been made. Adrenaline levels rising as we speak. Am in touch with JC. Will investigate 😡😉

Buffafly profile image
Buffaflyâ€ĸ in reply to

You have to sign in to read the full article but a quick look at the page will give you the idea bmj.com/content/357/bmj.j2139

Buffafly profile image
Buffaflyâ€ĸ in reply toBuffafly

If you Google 'firms raising prices of generic drive's you will find numerous news stories, but it seems that they are now trying to close the loophole, better late than never 🙄

Buffafly profile image
Buffaflyâ€ĸ in reply toBuffafly

Should be drugs there.....

Barb1

After reading the thread and doing a quick google, I have realised that your question is certainly valid.

In the light of my re-education on this

Yes we should be told about switching from branded to generic, so we can check if there is a problem. But no we don't generally need to stay on the branded med. Dose, or timing, effects can be addressed. The vast majority of us will never have a problem switching. Allergy to different additives can be a problem for some.

huffingtonpost.co.uk/entry/...

This article is interesting. At the beginning an experiment is described which showed that Parkinson's patients were separately given two injections and told they were equally effective, but the second was much cheaper. They were asked to report effectiveness. The more expensive one was considered 38% better. The researchers knew however that the injections were identical and in fact just salt water.

The power of suggestion. If I was given my usual Harrod's Foodhall pate de foie gras in a porcelain jar, and separately the same, but packaged in a Co-Op yogurt pot, I would likely describe the Co -Op version as affreux, horrible (pronunciation in French) as my onetime girlfriend from the Latin Quarter described my cooking.

Actually that would never happen, the Harrod's branch opposite Hull docks has closed down and according to my wife who reads the Daily Telegraph, never sold pate de foie gras anyway. And the only time I set foot in Harrod's Brompton Road was when we trashed it back in '68. 😉 And I wouldn't eat anything from Harrod's anyway

Apologies to anyone who reads the Telegraph and gets their weekly grocery order from Harrod's.

fnurd profile image
fnurdâ€ĸ in reply to

In order to get one new drug onto the market, including all of the research, development including clinical trials the average cost, taking into account the drugs that fail along the way, at present is ÂŖ2.6 billion. The amount of testing and bureaucracy now required by regulatory authorities is massive. In my opinion quite a bit of which is pointless and counterproductve. However all of the testing at least means that the efficacy of new drugs is beyond doubt, and the safety is as good as can be reasonably expected at this stage.

In order for a company to get approval for a generic product all that is required is to demonstrate approximate bio-equivalence to the original drug. This is done by showing that plasma levels (average, maximum levels and time to maximum ) of the drug are between 80% and 125% of the original drug. No efficacy or safety data are needed. So it is unsurprising that major differences are seen in effectiveness between some drugs and their generic 'equivalents'.

Indeed for some drugs with a narrow therapeutic index (eg warfarin) the generic versions are known to present problems, and cannot be automatically substituted. Flecainide probably also comes into this category.

So, not a clear-cut area.

Barb1 profile image
Barb1â€ĸ in reply tofnurd

and all the more reason to keep patients informed when changed to a cheaper drug, so that effects can be monitored.

Barb1 profile image
Barb1â€ĸ in reply to

Yes, I understand about the power of suggestion. Maybe when a drug is changed it could be flagged up to the GP who can call the patient in for an assessment after so long and then the patient is told? A difficult one but one that does need to be addressed I feel.

Hi fnurd

Welcome to the forum and thank you for a well crafted and robust defence of the drug majors

Do you have any conflict of interest on this matter?

Do you feel we should be suspicious of any other meds commonly used by members?

Are you a fellow AFibber?

fnurd profile image
fnurdâ€ĸ in reply to

My reply was in no way designed to be a defence of pharmaceutical companies. I certainly have no great love of these organisations, but I do like to stick with facts as far as these are available, which fits in with my occupation as a medical statistician. I have worked with food manufacturers and pharmacutical companies in the distant past. However for 25 years I ran my own medical statistics company working on clinical trials, with clients including research organisations, pharmacutical companies, charities, the NHS, and individual Doctors.

I have been semi-retired for a few years now, so have the time to make comments where I have any experience (personal or professional).

Yes, I have had AF (paroxismal ) for about 12 years, which was well controlled by Flecainide 150mg and bisoprolol 2.5mg, but was threatening to become permanent. It was then I got involved in the forum, initially to find a really good EP. I went with Richard Schilling, based on recommendations here. Had a cryoablation on December 5th, since when have had some interesting moments, including rhythms I didn't know existed! The odd rhythms stopped when I went back on Flecainide/bisoprolol. Now 5 weeks on, and gradually weaning myself off the drugs again, hoping to remain in SR.

As everyone knows most of the drugs we use do work, at least to an extent, however based on conversations with Prof Schilling, and my own investigations into the area (too much available time when retired!) the use of rhythm control is coming increasingly under scrutiny. The problem is that even when SR is maintained some stroke risk still remains. This is what is observed in studies. When I once queried this with some cardiologists at a meeting (in the bar actually) they suggested it was due to people thinking they were in SR but were actually having 'silent' AF episodes. Prof Schilling is also convinced of these 'silent' AF episodes, presumably based on Holter monitoring. He also raised the issue that SF may be caused by an underlying cardiac defect which continues unchanged by the rhythm control, and leads to the stroke risk. Also tolerance of the the drugs can decrease with age, and reduce life expectancy. This is of course where ablation comes in.

Barb1 profile image
Barb1â€ĸ in reply tofnurd

Happy to have input from an expert in their field.

â€ĸ in reply tofnurd

Fnurd

Where were you when we needed you? What persuaded you to break cover 🤔

Ah yes, facts.

Did you mean historical, legal or philosophical? Surely not scientific? You should think twice before taking on an expert such as myself with a BSc from the University of W********

As you know, the best of any forum often lies unheard, in the depths of unheralded conversations. Now that you are unmasked, could I pusuade a woman of such obvious talent to share your expertise more widely by starting your own threads when the mood takes?

Many a time I have felt here that we sorely needed a purveyor of lies, damned lies and s********* on board as Oscar might have said but didn't. You will have to forgive me, I have never knowingly refrained from using a hundred words when a dozen would have sufficed. Which is I hope the only reason why, quite reasonably, nobody listens to a word I have to say....☚ī¸ Well ok, not many people.

7Helena profile image
7Helena

Yes, I am given generic drugs from various companies but seem mainly to be OK. However I do find that some generic warfarin tablets break into pieces when I use a tool to press them out of the packet and I assume it's because they are softer. I find that I'm unable to swallow bits and pieces so I throw them away which is very wasteful. Also, I'm on a specific multivitamin to make up for an exceedingly poor diet because I'm food intolerant. At intervals these are replaced by generic tablets which I'm told are equivalent. I am sceptical mainly because I'm told to take two of these instead of one as my original prescription.

cassie46 profile image
cassie46

I had problems some time ago with Bisoprolol. I had not been feeling to good for a few months, heart rate jumping around more than usual and I then noticed that the last few packs of tablets were of a different brand. I looked at the ingredients and found that it contained a yellow colorant that is known to cause palpitations, it has been banned in quite a few countries. Told chemist - back to previous ones and all okay - chemist has note on my file now not to be given this brand. always look at all ingredients now (was a yellow colorant).

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