With the latest shortage, I did a bit of research of past posts and this seems to be an issue that comes up every few years.
I think it is completely unacceptable that a drug we are all dependent on to stay well disappears every so often, for often confusing and often obscure reasons. I'm not sure I really believe the 'we can't get an ingredient' excuse...call me cynical!
Shouldn't we be all writing to our MPs, and, if this Zentiva is really this unreliable, argue for a state subsidised brand which has the same ingredients/fillers? It would be less expensive then us all ending up in hospital because we can't get this medication or getting ill because we can't tolerate other brands.
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Treetop33
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It's not just hcq...there is no Armour thyroid extract at all available and thats made in America. It comes from pigs...no shortage of bacon though ! .ive been put on levothyroxine and liothyronine which I've struggled to tolerate in the past as it doesn't stabilise my bloods but as thyroid disease can be fatal if not treated ive no choice 🤷♀️ x
Treetop, yes its an issue. thank you for your suggestion. In fact. Before Zentiva, there was another brand called Plaqunil. Still avaliable in Turkiye, that is better than any brand here(not sure if anywhereelse possibly America too). It used to be avaliable in the UK and I got better immediately. They stopped it because it was expensive. UK said they stopped that medication and I had to take Bristol lab ones. I got worse. I mean Lupus worse. I was short on medication on a business trip in Pakistan and wanted to buy my medication over the counter (was widely avaliable in many countries but we have to beg for ours) and found Plaqunil in Pakistan. I never looked back and ended up traveling to countries (ten years) which sold Plaqunil over the counter to keep a supply going for myself and daughter until covid. So Zentiva is good but those who will remember Plaqunil was even better, unless it's changed. In my view its a pricing of ingredients of medication rather than supply. Companies use cheap alternative and it does not work for majority of users. It is not just tolerating the med, it should also work for many and if used by so many, must be made avaliable.
I think we should write to wherever and not take the answer 'use alternative' because it does not work for so many of us.
Thanks that's really helpful information. It's so bad that there is a good medication that we are unable to access. My in-laws regularly travel to Greece - I wonder if I can get it there?
Europe goes with the same regulation and rules as the UK. I hope you find it. Even in Turkiye they put it on prisciption due to Plaqunil seen as a treatment plan for Covid for a while. I just know few people who gets me the supply as and when needed. A simple medication which costs peanuts are sold as gold dust. And we suffer. Best wishes Treetop. I am sure similar situations arise for other medication. Sad reality.
Thanks. So are you saying that may be possible for my in-laws to buy it in Greece, so long as it's not put on prescription?
I'm not sure the international reality is quite as bad as the UK one, if it exists at all. We have some peculiar Brexit/incompetence issues here! There is very little said about it though.
Yes possible to buy in Greece depending on the supply they approved, although never tried. I know Turkiye sells it. Pharma game is quite tricky. The name of the game is 'I can get you cheaper of the same product if you buy it from me' game. Ofcourse they are all approved by the medical Council or wherever.
Very true. Thank you for your input. What will happen is that noone will remember Plaqunil and eventually everyone will suffer because it is not being sold a d the Compnany will also stop producing due to demand being low a d we Re stuck with something it does not work or work as well. Who won in this game? Black Rock and Bristol. If Zentiva is struggling for supply, for whatever reason, we are also suffering. Noone will also remember Zentiva. What a horrible game at mine and both my daughters cost(life). THANK YOU for stating and supporting earlier statement.
I have written a letter. Here's a template if anyone wants to use it:
I’m writing on a matter of huge urgency.
I have lupus, and like those in the same situation, I am dependent on drugs to stay alive (before we had these drugs, average life expectancy was five years. Now most of us lead relatively normal, productive lives).
The go-to drug for people with rheumatoid conditions is hydroxychloroquine, an anti-malarial drug.
The brand of hydroxy we get matters. Get one that has worse outcomes and we end up in hospital, rapidly deteriorating. Most people with lupus who are under a consultant are prescribed Zentiva brand.
Currently, there are shortages of Zentiva. Lupus UK say that is it because the company are lacking a key ingredient, but the reality is this brand is constantly subject to shortages, jeopardising our health. Why? Because it is slightly (around £1) more expensive than generic brands. Many pharmacies refuse to stock it.
This is not the first time our health has been compromised. Most long-term sufferers will tell you the brand Plaquenil (webmd.com/drugs/2/drug-6986... is even better. It is available across Europe and the US, and even in places like Pakistan and Turkey. But it is again slightly more expensive, and so was withdrawn from availability from the UK.
This feels really counterproductive. It is going to cost thousands more to treat lupus sufferers in hospital than it is to ensure a supply of the drug we need. Moreover, the UK economy is already struggling because of ill-health. These shortages will make it worse.
Speaking personally, I am really busy with work at the moment - business is going well. The last thing I want is to have to search every pharmacy in Gloucestershire for spare boxes and/or have a period of ill-health which means I can’t work.
I am asking you to intervene. What needs to happen is:
1. Investigate the reasons for the shortage of Zentiva via the DoH.
2. Work to ensure continued supply of Zentiva, resolving any pinch points in production and supply.
3. Long-term, work with NICE to allow Plaquenil to be prescribed in the UK.
Is this something you could help with, along with colleagues?
There are currently shortages of active ingredients for several medications, and/or supply chain issues that I personally am aware of, including those for thyroid conditions, epilepsy and reflux suppressants. I am sure that these are not the only ones. Some of these problems are worldwide, some affect just the uk, but the increasing demand for medications of all types is evidently leading to shortages, even in hospitals now, as I understand. When alternatives are either unavailable or unsuitable the situation becomes desperate for many, unfortunately.
Lupus UK have recently issued updates regarding this brand of hydroxychloroquine. I also have personal experience of shortages and explanations from pharmacists, together with info from other HU groups, (lupus and thyroid), and from dedicated FB groups, (thyroid and epilepsy). Many contributors to these groups have posted the responses received from the pharmaceutical companies concerned which address both the supply chain issues and shortages of active ingredients. This is similar to the "rationing" of blood tests last year due to the shortage of test vials. Contacting the pharmaceutical companies directly can also give you accurate and up-to-date information.
Hydrochoroquine can't be that difficult to make if you are a drug company.
I'm assuming it only has one active ingredient.
Hydroxychloroquine Sulphate.
The rest are filler substances..and the film coating.
This article includes a section on what happens to hydroxychloroquine, it is converted into related substances Desethylhydroxychloroquine and Desethylchloroquine.
I agree it is a complicated process but they are talking about the lack of an active ingredient and are being very specific that this is the problem.
So is the active ingredient an active ingredient in the process, not in the body. Goodness knows.
Confusing statement.
I'm a scientist..and studied chunks of pharmacology .lots of chemistry too..as part of my medical sciences degree.
I like to question things and it is healthy to do so.
It is part of being a lupus warrior.
Possibly they could let us know what the substance is..
This would help.
The info says pharmacies can contact the company. Maybe they might tell us, the patients, if we ask them as we are the most concerned people .. ie the people it is affecting.
No, you have a very simple starting ingredient which goes through numerous synthetic steps (e.g. mixing, heating, distillation etc), which gives hydroxychloroquine. Then you mix the HCQ with all the other ingredients (fillers, lactose, colouring agents etc) which then get made up into tablets.
When I was doing organic chemistry at uni, I always ended up with brown gunk, rather than crystals, so I did drug information and drug safety instead! Safer to be in an office.
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