when a tablet is not THE tablet - Atrial Fibrillati...

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when a tablet is not THE tablet

fodgreen profile image
50 Replies

Before I tell My story I just want to make the point that I am sensitive to all Meds.

I was diagnosed with Perm. Afib 5 years ago and tried on several Anticoags. before settling with

Eliquis (apixaban) as the one I could tolerate. I have taken Eliquis for the last 5 years without any issues. In January when I received My Prescription it was Apixaban (Teva Brand) I thought nothing about it and started to use it. At the same time my CCB meds were increased in strength. I started to get bad side effects and put them down to the CCB but mentioned it to my GP that My anticoag. was different. To which I was advised its all Apixaban.

The following month I received another Brand of Apixaban and questioned this again. The side effects continued.

This month I received a 3rd different Brand of Apixaban and became very breathless and tired and proceeded to bleed severely from the Nose and back passage on several occasions.

I had a Telephone conversation with a Doctor and asked for My tablets to be changed to Eliquis only to be told that it was no longer available, so I made an appointment with GP who told me I could have Eliquis on Private Prescription (£60/mth). So it was available at a price.

I went to see a Pharmacist to ask about different brands and side effects and He assured Me that

different brands can cause many problems to certain People. (not all please note). and He also informed Me that they only stocked Eliquis and If I sent My prescription to them via Surgery I could have Eliquis always.

I have been back on Eliquis for 1 week and all Bleeding and breathlessness has ceased and I feel much better all round.

This of course may not be relevant to everyone , as they may tolerate any brand of Apixaban without any problems but I just wanted to relate My experience.

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fodgreen
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50 Replies
Vonnegut profile image
Vonnegut

Your experience confirms my findings with the different manufacturers of flecainide. I took it successfully as a PiP and then regularly until I was issued with the product from a different manufacturer which does not work in the same way at all! And it seems it is up to me to find a pharmacy that does stock the product made by the original manufacturer! You have to be pretty fit to be old with medical problems!!

fodgreen profile image
fodgreen in reply toVonnegut

Hi Vonnegut. The problem is that Gp's will not accept that these different brands are not the same. My Gp remarked about the nocebo effect (in the mind ) to which I said Blood flowing from your nose and unable to breath is hardly in the mind.

Vonnegut profile image
Vonnegut in reply tofodgreen

I called the pharmacy at the co-op in the town and she was lovely and stocks the decent make that works and told me to get my surgery to send her an electronic prescription which I hope they will do.

fodgreen profile image
fodgreen in reply toVonnegut

So pleased 💊

Peony4575 profile image
Peony4575 in reply tofodgreen

The chemical composition of the active ingredients will be the same . But the other stuff in it, what is called the excipients , can vary a lot and that can cause problems

Vonnegut profile image
Vonnegut in reply toPeony4575

Very interesting - thank you! We have a lovely receptionist who has sorted things out for me ( hopefully!)

fodgreen profile image
fodgreen in reply toPeony4575

I was prescribed 3 different brands of apixaban over 3 months. As you say all with possible different excipients.No wonder we suffer various side effects. Its all down to cost saving at Surgery and sod the patient.

Peony4575 profile image
Peony4575 in reply tofodgreen

The pharmacists buy in the cheapest one they can get from the wholesaler to maximise the amount of money they get reimbursed per item not what it actually costs them . So your GP is saving money for the NHS the pharmacist for their business . The GP just prescribes the generic name , unless there is a reason to specify , then it’s up to the pharmacist which brand you get

fodgreen profile image
fodgreen in reply toPeony4575

Without any consideration for our QOL 😂

Vonnegut profile image
Vonnegut in reply toPeony4575

Apparently, you can request the more suitable make you want to be put on the prescription along with the type of drug. I was advised to find out which pharmacy stocked the drug that worked for me when made by a certain company and was fortunate that the first place I rang had it. The pharmacist at the Co-op in the town told me to get my surgery to provide a digital prescription for it and that has now been achieved! Hopefully my husband will be able to collect it for me soon!

fodgreen profile image
fodgreen in reply toVonnegut

This is exactly how I achieved getting My Eliquis brand of apixaban . Glad u got sorted as well.

FancyPants54 profile image
FancyPants54 in reply tofodgreen

Teva Levothyroxine for hypothyroidism gave me terrible nosebleeds for the week I took it until I got wise and asked the pharmacist for help. Once away from Teva I was fine in that respect. I raised a Yellow Card against the brand and the pharmacist marked my notes "never Teva".

Brands do cause issues. With hypothyroidism our blood levels can drop or rise too much on identical doses of different brands.

The cardiologist I last saw for Afib told me that beta blockers and calcium channel blockers were all the same so it wasn't worth me trying to switch! Of course they are not the same. They work in a different way! I'm a layperson. How come I understand that and he didn't?!

Vonnegut profile image
Vonnegut in reply toFancyPants54

Because he’s a doctor and their training deprives them of common sense!

mesally profile image
mesally in reply tofodgreen

I've just had a similar chat with my gp. Just started taking sotalol and awful side effects, including real breathing difficulties. His response was you have to give things time. I know you do, and that 5 days is not long. But, I draw the line at not being able to breathe!

Vonnegut profile image
Vonnegut in reply tomesally

I tried to like what you said but the likes aren’t great at counting and went down to 2 from 3?and doesn’t seem to know about 4!

mesally profile image
mesally in reply toVonnegut

Thanks, I'll take the like anyway!

Mermaid1919 profile image
Mermaid1919 in reply toVonnegut

Flecainide.... same here. I had bad side effects from a different supplier and now the chemist has it on screen to keep me with the same provider. Looking into what was in the medication I'm wanting to get off them completely at some point.

Vonnegut profile image
Vonnegut in reply toMermaid1919

Good luck-,it may have increased my fatigue but as I had that already and at 79 I have already had a fair bit of active life, I’d rather put up with it than have my AF worsen.

Countrydweller2 profile image
Countrydweller2 in reply toVonnegut

Do you know the original manufacturer please? All the anticoagulants make me ill in different ways and the doctors are fed up with me. 🙄

fodgreen profile image
fodgreen in reply toCountrydweller2

Eliquis is the original brand of Apixaban developed some 20 years ago. They have now lost thier licienceas sole producer. So all other drug manufacturers are producing Generic versions that could contain other expediants causing some people side effect problems.

Countrydweller2 profile image
Countrydweller2 in reply tofodgreen

Thank you!

Vonnegut profile image
Vonnegut in reply toCountrydweller2

I had trouble with a different make of flecainide which isn’t an anticoagulant but the Apixaban manufacturers are Eliquis I think - don’t often take them now since no longer have any long fast episodes of AF. I had a tooth extracted yesterday and was concerned as I had taken an Apixaban the previous evening but all was well and the blood clotted as it should have after the extraction.

Vonnegut profile image
Vonnegut

And remember about the pixies who couldn’t go to the fair because there was a pixie ban!

fodgreen profile image
fodgreen in reply toVonnegut

Excellent😀

Vonnegut profile image
Vonnegut in reply tofodgreen

I had a tooth extracted by Alex, the lovely dentist who told my husband the Apixaban joke- he had thought he said the pixies couldn’t go to the party but liked the fair version better!

Desanthony profile image
Desanthony

Yes this happens often when a pharmacy says they cannot get a particular drug it is because their suppliers no longer carry it - so wise to ask around and find somewhere that does obtain it.

Raewynne profile image
Raewynne

I'm glad you were persistent. Yes I believe it's all the different fillers they put in .At our expense if we have sensitivities and a lot of us do.I had a really bad belt of irritable bowel from fish oil tablets.Dr said it was an additive in them but I got so sick I ended up with a perforated bowel. Now I have a Stoma and my life is changed completely.

Vonnegut profile image
Vonnegut in reply toRaewynne

What a dreadful story- poor you. You have my sympathy and do hope you manage to deal with the stoma as an old friend of mine has over several years

Vonnegut profile image
Vonnegut in reply toRaewynne

Poor you! Puts my experience into perspective!

BeeBee79 profile image
BeeBee79

I’m very sensitive to medication and also take Eliquis. My doctor tried to change me but I called and said I don’t want o. No side effects with this at all so I’m not taking a chance!

It would be interesting to know if there is any scientific research around side effects of the common excipients

Vonnegut profile image
Vonnegut in reply to

I tried to like your comment but it went from 1 to 0! Seems the🤍s need to learn to count better!

wwatson280283 profile image
wwatson280283

Hi fodgreen, I feel your frustration. I had a similar scenario in relation to different brands of flecanaide and side affects. When I contacted the GP surgery about it they said they could not endorse a particular brand of the drug and it would be down to the pharmacy. Needless to say I went to the pharmacy and not surprisingly they placed the responsibility onto the surgery. Basically chemists have main suppliers who supply the chemists with generic drugs of all brands depending on their availability at the time. The pharmacist was very nice but explained the only way round it was to repeatedly open the bag of drugs each time I collect them. If my preferred brand is not there tell them and they will re order.Why a note ( for medical reasons) can't be put on the prescription has not been suitably explained to me. Just another sign of an NHS which doesn't work for the benefit of patients.

fodgreen profile image
fodgreen in reply towwatson280283

It would be so simple just to state the brand on your particular notes surely.Not rocket science. The problem is that the Generics are cheaper and they are pushing them to save money.

Dippy22 profile image
Dippy22

I may have an issue with Lixiana (Edoxaban). Shortly after starting to take it I saw one down the loo one morning - if you know what I mean. It was intact and undigested. I’ve not happened to see another one since, but I’ve no idea how many are going through ‘the system’ like that or if indeed I’m getting any benefit from the drug. Neither the pharmacist nor the GP had an answer.

fodgreen profile image
fodgreen in reply toDippy22

That's interesting.

Vonnegut profile image
Vonnegut in reply toDippy22

Surely they should have given you the stuff that actually manages to get into your digestive system and round to where it should be going?! I was lucky to discover a different pharmacy in the area that did stock the brand of flecainide that works for me instead of the generic one that doesn’t! And I arranged for my surgery to send an electronic prescription for it to the lovely woman there so my husband could collect it for me from her! You have to have your wits about you when struck with all these nasties!

Mrsvemb profile image
Mrsvemb

This is interesting. I have problems with certain fillers in all tablets. I always read the ingredients before starting any new tablet or brand. Boots pharmacy have been excellent and they check all meds for me.

I had a problem with Nebivolol so I asked my GP to request Glenmark. Teva was a definite no no for me. The ingredient that I cannot tolerate is crospovidone or povidone. Edoxaban contains it.

Sometimes it means there is a delay in obtaining my prescriptions, while Boots source a brand that I can tolerate.

I order my medication online and always order as soon as it is available to order. This way I have built up a stock, so when I have a longer wait I don’t run out.

Your GP can select Eliquis on the prescription. It is all about cost. Whilst you are obtaining Eliquis from you pharmacy, this is fine, but try and order early to build up a little stock.

If the pharmacy stops dispensing Eliquis, then you will need to put pressure on your GP to request Eliquis on the prescription.

fodgreen profile image
fodgreen in reply toMrsvemb

Thanks for advice. Point noted about ordering.

Outtheresinger profile image
Outtheresinger

I received 3 different generic versions of one of my tablets over the space of 3 months and it caused havoc so my GP put a note on the repeat prescription that it had to be a certain brand to ensure consistency. The only problem I’ve had since is that if I try to get my prescription made up other than at my normal pharmacy they often only stock the generic versions and can’t obtain the branded version so my prescription comes back minus that item.

Mrsvemb profile image
Mrsvemb

Hope this helps you, like you am sensitive to medication. It took me a long time and a lot of effort, identifying the fillers that I cannot tolerate, but was worth it.

Countrydweller2 profile image
Countrydweller2

That is very interesting. Thank you so much! I can't get on with any anticoagulants, apixaban makes me faint and ill, but I remember now that I had Eliquis a few years ago but don't think I had any side effects. I stopped it because of the court cases going on at that time. I might ring the chemist.

JOY2THEWORLD49 profile image
JOY2THEWORLD49 in reply toCountrydweller2

Hi

Try PRADAXA 110mg x twice a lower dose.

cheri JOY. 74. (NZ)

Countrydweller2 profile image
Countrydweller2

Just rang our local chemist, they can provide Eliquis but doubt my doctors will prescribe it because it's so expensive. But I will try to get an appointment asap and see what happens.

fodgreen profile image
fodgreen in reply toCountrydweller2

My local boots chemist only stock Eliquis so i don't have a problem.Best of luck

Countrydweller2 profile image
Countrydweller2 in reply tofodgreen

Thank you!

Qualipop profile image
Qualipop

I have the same problem with different brands. I react very badly to certain colourings and preservatives. I've taken oxycodone for years for spinal problems and my GP has to specifically prescribe the original oxynorm brand yet even then, when in hospital I was given one of the generics after my own bottle ran out. It made me really ill within 15 minutes of being given it. When oxynorm was in short supply a local chemist told me he had a lot of patients who couldn't tolerate the generic varieties but he had found one that wasn't quite as bad. Apparently my GP has to fill in a form to explain why I need the original brand. I have the same problem with my heart meds but it's down to my chemist to provide me with the brands I can tolerate.

fodgreen profile image
fodgreen in reply toQualipop

It's a minefield is'nt it !

Qualipop profile image
Qualipop in reply tofodgreen

It is when even the hospital doesn't give you what's been specifically prescribed then you've got the manufacturers that use two or three different companies to pack things so they can look totally different but be identical, made by same company , just packed elsewhere.

JOY2THEWORLD49 profile image
JOY2THEWORLD49

Hi

Great that you could pinpoint the culprit.

Interesting. I'm on PRADAXA 110mg (lower dose) x twice a day.

I have just read that you should not take an anticoagulant if one has cancer.

But I was given 110mg as above by my triage team and when transferred a minor hospital changed it to 150mg x twice. On the first discharge I was diagnosed with thyroid cancer.

Apparently cancer and an anticoagulant can make one bleed. (mortality is the risk).

cheri. JOY. 74. (NZ)

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