Hello, I'm new to this forum/community and have joined to see if anyone can be more knowledgable than my doctors about the Plaquenil/Zentiva change!!??
Just for a bit of background I was diagnosed with lupus about 6 years ago now, after a spell of being incredibly unwell. My symptoms started off as simply feeling slightly unwell/tired and rundown but slowly over the space of about 2 months got increasingly worse to the point where I had no energy left what so ever, my arms and legs felt like lead weights were tied to them, like doing the simplest of tasks such as opening a door or holding a knife and fork became increasingly harder and harder, walking up the stairs was like a full work out at the gym. This was so so out of character for me as I'm a really active and social person.
I then developed symptoms of really severe vertigo, I felt permanently travel sick, to the point where I could no longer simply walk around without having constant dizzy spells. I was, at the time, diagnosed with ME and pretty much told there was nothing anyone could do, I dropped out of uni and became incredibly depressed, and more and more unwell to the point where I had to move back to my parents and my mum became my career. I wasn't even able to shower, or feed myself the dizziness and sickness became so severe I could barely make it through each day, and would be completely lost in my family home. If the lights were out I was so dizzy I couldn't figure out how to get to the bathroom from my bedroom without calling for help.
It was my mum who spent hours researching on the internet, traipsing me around doctor after doctor and basically never giving in that finally resulted in me being diagnosed with Lupus. She found an amazing rheumatologist, who did the ANA test, along with many other things and said that he thought lupus was affecting my brain.
He put me on Plaquenil hydroxychloroquine, and within 4 months I was feeling about 50% better, within 12 months my life was pretty much back to normal, I went back to uni, finished my degree, found a job I love, got my own place and have been living happily, loving life with only mild symptoms ever since. Twice over the past 5 years I've tried Quinoric, and both times my symptoms returned within about 2-3 weeks of taking this, so I went back onto Plaquenil and would be back to normal within a few weeks.
2 months ago I was told I couldn't get any more Plaquenil, and that it had been replaced by Zentiva, I was terrified when I found this out, but was reassured that it was the exact same drug, just re-branded, so I didn't think much of it. i've been taking it for 2 months now, and for the last month have really been struggling with my symptoms which are all returning. They are not as intense as they were the first time round, I'm just about managing to carry on, but for the last week in particular its been very difficult. The tiredness and heavy limbs feeling is back, as is the constant nausea. I went to see my rheumatologist today, and I thought he would be able to reassure me that it isn't the tablets and is just a mild flare up that will chill out in time (I do sometimes still get them - but they dont usually last longer than a few weeks) but he hadnt even heard anything about the change and couldn't answer any of my questions, instead he just took my bloods and said he'd be in touch if anything was wrong and sent me on my way!
Has anyone else had any difficulty with the Plaquenil/Zentiva change, or does anyone know if the formula is EXACTLY the same??? Could there be a slight variation in it that for some reason means it isn't being used by my body as effectively as Plaquenil?? or am I just being paranoid and just need to sit out the flare up without worrying?? It does seem unnaturally bad and I'm starting to feel very worried about it as life really isn't worth living when its as bad as it was! :/
Sarah - sorry this got super long!
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It just says hydroxychloroquine sulphate 200mg film coated tablets and then Zentiva at the bottom in a green box, the ones I took before said Plaquenil sanofi aventis on the box. Thank you for replying
That's ok, thank you for your help. I'm just very worried because quinoric is hydroxychloroquine too but that brand just didn't work as effectively so Im worried this new one isn't doing either :/ it's really hard to tell if it's the tablet switch or something else
We have received reports that a number of people are having difficulty getting hold of Plaquenil and have been informed from their pharmacist that it has been 'discontinued'.
After speaking with Sanofi-Aventis Medince's Information Department (the manufacturers of Plaquenil) we have learned that Plaquenil has now been 'de-branded' to generic but that the same forumulation of the drug will be available through pharmacies if they order Hydroxychloroquine through Zentiva (sister company to Sanofi).
This information will be especially important to those people with lupus who experience negative side-effects from the alternative brand of Hydroxychloroquine, 'Quinoric'.
If your pharmacist has any difficulty obtaining the Hydroxycloroquine with the same formula from Zentiva, the product description is: "HYDROXYCHLOROQUINE SULPHATE (ZENTIVA) 200MG FILM COATED" and the 'PIP number' (Product Code) is 1201730. If for any reason they cannot find the product on their system they can ring the customer service line on 01483 505515.
Update - 07/07/2015
We are aware that some pharmacies have been experiencing difficulty in obtaining Hydroxychloroqune Sulphate produced by Zentiva from their suppliers. Local pharmacies which are supplied by AAH (including Lloyds) may not be able to order this brand at present as we have been told that AAH are only supplying hospital pharmacies with Zentiva.
We have been informed by Sanofi Customer Services that we should advise patients to try pharmacies that are supplied by Alliance or Phoenix (including Boots), as there should be no supply issues there. If your pharmacy is supplied by Alliance or Phoenix and is unable to order 'Zentiva' brand Hydroxychloroquine please email paul@lupusuk.org.uk with the name, address and 'account number' of the pharmacy so that we can raise the issue with the producers directly.
So sorry you have been feeling like that, dizziness is awful, I was on hydroxochloroqune and when it was changed from placqunil, I felt so awful I had to stop taking it, I have Hughes syndrome which sometimes goes along with lupus, I noticed that placqunil worked for me in 3 days balance, clumsiness etc
Not everyone is the same, but for years I was put on Betahistine 16mgs X 3 a day, still on it, when I stop I have to crawl to the loo feeling so dizzy life doesn't feel worth living.
I think it takes a lot of time before Hydroxochloroqune gets out of your system, but hopefully will improve like me.
Good luck it might be worth asking about betahistine too
Do you have personal experience of taking Plaquenil or Quinoric?
If you search this forum you will find many examples of people who have had problems.
Also information about this on Lupus UK website:
"Hydroxychloroquine Prescriptions
It has come to our attention that some lupus patients have been receiving Quinoric® instead of their usual Plaquenil® and it has caused adverse effects on their health.
Plaquenil® and Quinoric® both use the same active ingredient (Hydroxychloroquine) but they may have different fillers or dyes. It is these fillers/dyes that are probably what many people have a problem with.
The reason Quinoric® is now being dispensed is that it is a cheaper alternative to Plaquenil®, which has come off its patent.
If you have received Quinoric® and have noticed adverse effects then you should consult your GP. We have been informed that if they specifically write Plaquenil® on the prescription then the pharmacy will be able to supply you with the correct brand."
I can ONLY tolerate the namebrand Plaquenil. I've tried several generic brands INCLUDING one that produces tablets that look IDENTICAL to the namebrand. The filler ingredients vary in the formulations.
What do your meds look like?
I have a list of ingredients for all the formulations I could find. If you tell me what your meds look like, I might be able to provide you with a list of ingredients. It is possible that your new meds look identical to the old meds. The filler ingredients between the Sanofi version (discontinued) and the Zentiva generic is SLIGHTLY different so you could be having a reaction.
Folks here have written that they have had GOOD experience switching to a generic made by Blackrock Pharmaceuticals (yellow, round table with incepta imprint).
I could do with your help. Recently swooped to the new brand of plaquenil to the zentiva brand. This was approx two weeks ago and every day for ten days I have had the most awful migraines! Energy less too but not sure if that's lupus related or effect of migraines and loads of meds to get rid of them!!
You mentioned there is a difference in the fillers? Can you send me the list please? Also details of the Black rock brand ; are they available in uk?
Please help cannot carry on like this and everyone saying tablets are same but my body is screaming otherwise!
So sorry you are having migraines! How terrible! I'm in the US and can only tolerate the namebrand Plaquenil made by Concordia (since April 2015). I tried the generic replacement (for us it is by Prasco Labs) and after awhile, my stomach issues would return so now I stick with the namebrand even though it is much more expensive. YOU know your body and if this is the only thing that has changed then it is safe to assume that something in the generic is affecting you adversely.
When all the hullabaloo was happening in the UK regarding the debranding of Plaquenil, I did some research on all the brands that I could find (US and elsewhere).
This is what I have for the UK:
Plaquenil - Sanofi (Outside United States) - DISCONTINUED
Description: White Round Film-coated Tablet with HCQ 200 imprint
I am not by any means an expert on this nor am I a chemist so I have no idea what, if any, difference there is between the discontinued Sanofi Plaquenil and the generic made by Zentiva. I know many folks have made the switch with no side effects while others have not been so lucky. Some in the UK have said they have had great experience with the Blackrock Pharmaceuticals generic.
There may be other generics available to you. Drugs.com has a list of hydroxychloroquine products with photos and descriptions of the tablets/pills and the list of inactive ingredients.
I could only tolerate Plaquenil made by Sanofi. Everything else I got from the pharmacists made me ill - Quinoric was horrible - actually made me poo my pants, on more than one occasion. So I fought to get Plaquenil written on my prescription, rather than just hydroxychloroquine, to ensure I got that every time. Rather than the lottery of what the pharmacy was buying in that week. (I think Plaquenil cost more, so they generally order the cheaper versions). So when I heard Sanofi weren't making Plaqunil any more I was extremely concerned. But there were loads of posts on here, including the product number for the Zentiva brand - who are actually the sister company of Sanofi. I was led to believe that the products were exactly the same. I know I have had no problems swapping over to the new product.
I hope you work out what is causing your symptoms and hope it's not a flare.
Thanks everybody. I had a hospital appointment the other day and they have increased my dosage. I have felt less dizzy this week, and have had more energy too, so fingers crossed its not a big flare up!!
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