Drug brand substitutions - dangerous? : Hi all. I... - LUPUS UK

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Drug brand substitutions - dangerous?

Treetop33 profile image
19 Replies

Hi all. I got one of my critical drugs, clopidogrel, from the chemist and there was something about it that made me think it was a cheap, slightly dodgy brand. I normally do better on Zentiva but have had others too. The brand had so many fillers in it, including silica which is not good for autoimmunity. I then do some reading and this particular firm has been investigated for contamination and failure to check quality on import.

I am just so angry that in the drive to lower prices, the NHS and pharmacies are doing this to us. I haven't taken my dose today, which is dangerous anyway, and will try and get a replacement.

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Treetop33
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19 Replies
Treetop33 profile image
Treetop33

Debbie_kinsey Alida_Bennett michaellasmith

PMRpro profile image
PMRpro

Generic drugs are normal once the original is out of patent - the active substance is the same they have to pass the same quality controls which is how they find if stuff isn't up to the mark. Some people may not tolerate the fillers that are used but in some cases the generic doesn;t work as well - and that was the case in 2012 with Plavix. To get the brand you will probably have to get the GP to specify it and that isn't always possible.

pubmed.ncbi.nlm.nih.gov/336...

Treetop33 profile image
Treetop33 in reply toPMRpro

Thanks for the article.

Treetop33 profile image
Treetop33 in reply toPMRpro

Thanks for the reference, Surprisingly, I was just reading that one in three users of Clop. lack a gene which will make it effective. Apparently you have to get tested before prescribing. Who knew? Not me.

health.harvard.edu/blog/wal...

PMRpro profile image
PMRpro in reply toTreetop33

There is a reply on my own forum about a gene that prevents folic acid being utilised - highly relevant you might think when patients are on methotrexate where folic acid is required to prevent adverse effects including awful mouth ulcers. Never heard that mentioned either ...

Treetop33 profile image
Treetop33 in reply toPMRpro

Y'know I opened the box of clopidogrel (my partner picked it up) and I was in tears on the kitchen floor. I have a lot on, am ill anyway with a virus, and now this. It's the lack of care that is so deeply scary.

Poshcards profile image
Poshcards in reply toTreetop33

big hugs, I know the tears bit, i have got so low with the Zentiva battle every month, take care xx

HantsMan profile image
HantsMan

So which brand did they give you?

Treetop33 profile image
Treetop33 in reply toHantsMan

RelonChem.

MrsMarigold profile image
MrsMarigold

Hi treetop. It’s always daunting when our “normalcy” and routine is boggled by a different prescription drug. I’ve had this happen to me many times and I especially do not like it that one of my important medications is now made in China. I’ve not analyzed the ingredient list yet; it does work. I guess going forward I have to have some trust in the system and choose my battles/because to survive for me means peace: even on the kitchen floor. Mop yourself up and Netflix a new series or movie. My go to is Pride and Prejudice with Kiera Knightly. 🫠

Treetop33 profile image
Treetop33 in reply toMrsMarigold

I definitely do try and pick my battles, but the trouble is I can't mess with blood clotting problems. It has to be the right meds. And I also don't want to be poisoned by contaminants. I think we should be wary because very little is being checked in the UK right now when it comes to imports. I hope that will change in the future x

MrsMarigold profile image
MrsMarigold

I’m sorry to hear that your‘oversight’ committee is not up to snuff. Frankly after the Covid debacle in US it is very hard to trust our ‘experts’ so I do get it. Be well💜

Treetop33 profile image
Treetop33 in reply toMrsMarigold

Hmm yes it's not about not trusting the experts, it's just a lack of funding means everyone is too stretched to cover every base. Plus our import controls are very lax (Brexit and funding cuts). Part of taking care of one's health in the UK is keeping an eye out and just checking.

MrsMarigold profile image
MrsMarigold

I know I’m learning more and more about your health system and you are right/ the checking as you say is evident and wearisome. We have our own problems as well. My own battle too. Get my lupus diagnosis sounds very much like UK: fibromyalgia, ANA positive, clinical symptoms longer than my monthly grocery list/ negative. Until I traveled far and that got me in the right lane. Best to you

Treetop33 profile image
Treetop33 in reply toMrsMarigold

And to you. It is sometimes baffling as to why it is so hard. I think it's because docs aren't trained to listen...all very patriarchal. I appreciate their service, for sure, but with complex illnesses that are little understood, it does have to be more of a partnership.

MrsMarigold profile image
MrsMarigold in reply toTreetop33

I had a neurologist a few years ago tell me the doctors’ now are trained to check all the boxes/ not enough critical thinking. Too busy too overworked. Handling insurance claims make some rather uncaring or very caring. It’s a search with all of your notes in order. Although I had a woman rheumatologist who looked at all my notes and said, ‘a bit obsessed, huh?”

You will be fine! We will all be fine!! Laugh as you write about yourself. Oh! She also said as she turned pages, “Do you believe all this stuff?” You mean documented references?” Um, yea!😂 keep smiling and find the joy. It’s right here even though it seems not 😄

lupime profile image
lupime

Just sending you best wishes Treetop. I know how hard all of this can be and my heart goes out to you. x

Partner20 profile image
Partner20

A regulatory body for the UK already exists, it is the MHRA. They are responsible for licensing any new medication before it is imported and or made available for prescription. The active ingredient in any medication is the same whether branded or generic. If you are concerned about any of the excipients used, check the PIL that accompanies the medication. Some people do feel better on a branded product, and an unchanging prescription is often preferred for stability, but generic meds cannot be described as contaminated as this is simply not true.

Treetop33 profile image
Treetop33 in reply toPartner20

That isn't what I said though is it. And we know regulatory bodies are underfunded, as is everything in the health system.

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