Hi
I am about to start on Hydroxychloroquine but I know there has been some controversy about the generic brand versus Plaquenil, the latter being much better at being tolerated.
I am seeing my GP on Monday for my prescription and I know there was advice given about Plaquenil (where to get it etc) can somebody post that leaflet/advice for me so I can print it off and take it with me. Thank you x
I take plaquenil since may last year and I take it every other day because I could not handle it daily, and it has been great I suggest you start to take it and stay alert on your symptoms and telm your doctor immediatly so they can adjut the intake.
Thank you so much, it is always nice to have other people's experiences.
Used brand and generic. Both work great for me 👍. I've found that this is a miracle drug for me. I had experienced fatigue, low blood pressure, dry mouth, dry eyes, my sweat glands were hardly working, dry skin, achy joints. This medication has given me back my life!
Got plaquenil from getreliableonline.net/go/pl... ❤️ to save $$. You can use coupon code "GET10" to get 10% off.
Your doctor having you skip days on plaquenil everyday?I am from Los Angeles,ca ernestine brown I go to lupus at. Ucla for many years I never heard of that a doc may stop you for a week but put back on but I was on for years they took me off month ago affecting my eyes.good luck
I do not have the information and have never heard that. I was put on hydroxychloroquine in 2009 and have had no side effects and it works very well. During the last 7 years I have been given hydroxychloroquine and for a period of time Plaquinel (the pharmacy may not have had the generic) but I never noticed any difference between the two. It may be an issue but for me both have seemed to work the same.
Good luck
Tammy
Hi Tammy, I think some people don't have a problem whatever the brand, However I know lots of people have suffered really badly with Quinoric. I am already apprehensive about taking this drug so want to try and minimise any effects I have. Thanks so much for replying.
I'm interested in other responses to this. I used to take Plaquenil and when I tried Quinoric (a common generic) I had stomach issues. Recently Plaquenil stopped being available (everywhere I think???) and now only generics are. I'm having stomach issues again. Anyone know a generic that doesn't cause issues?
Request the Zentiva brand. The others are generic. My repeat prescription says, "Zentiva brand only."
Wendy thank you so much. I am very grateful. I know there have been some real issues like those you have described in your other responses. I think I remember reading that Zentiva stopped making it but there was a near perfect alternative made by their sister company. I will ensure that I am not fobbed off with a cheaper alternative. Thank you
Hi
I believe Plaquenil or a similar alternative is available but it has to be specifically stated. I have read something about it but couldn't remember how to find it. Keep watching this post and hopefully we will both find out. X
Hydroxychloroquin sulfate is the same as plaquenil, I used to take plaquenil and then quinoric , the quinoric was awful, but then I was prescribed the hydroxychloroquin sulfate which was fine, good luck x
Thank you so much for replying. Everybody has been so helpful and kind. X
I've never had a problem when getting plaquenil or quinoric - in fact I seem to remember I've had another one too but can't remember the name. The important thing is that it is hydroxychloroquine (that is the generic name). Some people do react to different manufacturers but try it and if there's no problem for you then there is no worry. Heather
Yes, you are right. Different types use different fillers. The active ingredient is the same. Unfortunately some of us with lupus are sensitive / highly allergic etc and so these fillers can cause quite nasty side effects. But you're right. Some people can stomach the unbranded hydroxy and some can't. You don't know until you try.
Thank you Heather. Your reply is appreciated. I will try that.
Very quick reply. I will have more time later, when children are in school. But there are frequently posts about this. I think I might have posted myself. There is a search facility on this site, type hydroxychloroquine or plaquenil and a list of posts should come up. I have been on this since 2013. It took a long time to work for me but it is the starting block for most lupies. I take 2x 200mg a day, which I think is the max. dose. I have the Zentiva brand, which is the branded version. My repeat prescription says, "Zentiva brand only." They tried to palm me off with Quinoric a few times, but to be blunt, I had massive stomach issues and I've always suffered IBS type problems and diarrhoea but the Quinoric made me poo my pants, twice. I refuse it now. Luckily I was at home both times, but it's embarrassing at 40 years old, even when you've been with your husband for 20 years!!! I always take mine, 1 after breakfast and 1 after evening meal, with a small glass of milk. Any more questions please ask. I'll find a post for you later.
Wendy thank you. This is so helpful, I have e responded to another of your posts further up. I am aware there have been some real issues with other brands and I feel rubbish enough without adding to my list of things I have to deal with. I'm hoping Hydroxychloroquine will make me feel better not worse! I will discuss the brand Zentuva when I go to see my GP on Monday. Thanks again.
How funny I should stumble across this as I was literally just thinking the same thing after just taking my meds!
I've had terrible trouble since plaquinil vanished, and it seemed to be through taking quinoric!
I'm just now running out of zentiva and it's so much more like the plaquinil, so was just thinking to myself that I will insure I get zentiva in future! I have had a previous upper gi bleed so a little sensitive maybe....but I'm feeling I'm actually taking hydroxy again, which I haven't done for this past year, and my rashes are starting to go again 
x
I really hope you get sorted and are able to get the Zentuva brand which will hopefully reduce some of your symptoms. Thank you for replying.
Here is my post from over 2 years ago.
healthunlocked.com/lupusuk/...
Like I said, if you use the search function you might find more recent discussions.
Request Zentiva brand is my advice to you.
Good luck.
I will read that now. Wendy you have been so so helpful. Thank you so much x
Pleasure. We have to help each other don't we.
We do indeed. Can I just check, do Zentiva still make this drug then? You are getting it no problem still in the UK? So does your prescription say Hydroxychloroquine Zentiva brand only? I thought that Zentiva had stopped making it but there was another brand made by their sister company (not Quinoric)but I may be wrong about that.
Plaquinil was the original brand when I was diagnosed in 2913. They then stopped making it and there was a lot of discussion here, as people had lots of issues. But the sister company started making hydroxychloroquine instead - Zentiva. My prescription says Hydroxychloroquine- Zentiva brand only. Generics include Black Rock, Quinoric and Teva, I think. Quinoric was the pits for me. Black Rock wasn't too bad. But Zentiva gives me no issues whatsoever. We struggle enough with daily health issues without our meds making us more ill every day!
And no, I never have issues getting Zentiva. Pharmacy also cooperate with request every time.
That's great, thanks ever so much Wendy. X
Copied from Lupus UK website:
lupusuk.org.uk/plaquenil-av...
"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 formulation 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 0800 854 430.
Update – 11/12/2015
We have been contacted by Sanofi and informed that the supplier AAH is now fully stocked with Zentiva Hydroxychloroquine and have the product available to all pharmacies."
Spot on - great find baba.
It is indeed. Thanks ever so much again for everybody's help x
Thank you so much. Very kind to do this for me x
Hi Calebjacob
I've had a lot of issues with generic Hydroxychloroquine and I'm unable to tolerate any of them. I was on Plaquenil for 8 years after a diagnosis of UCTD in2002 and I had no problems with it. I now have SLE and was prescribed Hydroxy a year ago and tried all the different generic brands even Zentiva which have the exact same ingredients as Plaquenil although most people seem to tolerate it well I was unable to ( I am ultra sensitive to many meds) which makes me think there must be something different with the fillers making it difficult to tolerate.
Anyway to answer your question as far as I am aware and after searching high and low the brand Plaquenil is no longer available in the UK although the company do still manufacture it in other countries like Turkey, New Zealand and Pakistan which is annoying!
I have been lucky enough to source my Plaquenil outside the UK and have been taking it since December with no ill effects so far.
I would be interested to know if you do find that you can get it from somewhere within the UK, but like the others say Zentiva is most likely your best bet as it seems to be the most tolerated of all the generics.
Good luck and I hope you do well on whatever brand you take and hope it makes all the difference to you.
Diane🌺 x
Hi Diane,
I too am very sensitivity be to lots of drugs and I can only tolerate 1or 2 antibiotics, which is a nightmare. I am apprehensive about taking Hydroxychloroquine but I know I need to give it a go so I know one way or another. I have a really good Pharmacy in the next village so I will ask there if he is able to source Plaquenil anywhere. If so I will let you know. It's such a minefield isn't it! Thank you so much for replying and your advice, much appreciated. X
I'm in the US and I can only tolerate name brand Plaquenil. I've tried several generics and they all end up doing horrible things to my digestive system. I must have a sensitivity to the incipient (filler) ingredients but I don't know which one. So my rheumy got prior auth from my insurance and now I will only get name brand Plaquenil from my pharmacy.
Since you are just starting out, why not try the generics first? You may not have any issues with them. Or do you already know that you have some sensitivity based on past experience with other prescription meds?
I do have sensitivity unfortunately to many drugs. I also have Hughes, cannot tolerate warfarin or Rivaraxoban, I can only take a couple of antibiotics and I have also had issues in the past with Quinolones which are a variant of the drug contained within Hydroxychloroquine so I am feeling apprehension about tolerating any of the brands. That said I will give it a go, I may surprise myself. Thanks for your response, really useful to get other people's viewpoint.
Oh well then, yes, you certainly have a valid basis for concern! Perhaps doc can give you a trial with the knowledge that very quickly you may have to switch over to Plaquenil only. Doing this going in may ease your anxiety a bit knowing there's a plan B.
Note... I didn't have issues right away (or at least I didn't connect the dots). But after 6 weeks on generic hydroxy I simply stopped taking it as I was tired of my belly hurting and not sleeping because of it. Then after that, every time I tried a new generic kind, symptoms would return fairly quickly.
Keep track of dosage (I do split dosage am/pm of 300mg - it's based on weight). Try to take with a few crackers or something to eat and lots of water.
Hugs.
Your advice is very welcome, thank you. I will definitely take onboard what you say. Monitoring closely and see what happens. Thanks again xx
I hope you find a brand which is successful for you. However, do have regular eye tests. I took plaquenil for several years, but had to stop when I developed hydroxyl retinopathy.
Thank you for that advice. I have just had an eye test and discussed the risks with my optometerist who is going to monitor me carefully. He tells me the risk is low but real. Scary stuff x
Plaquenil is much easier on the GI tract for some as compared to the generic hydroxychloroquine because the brand has a coating on it that generics do not have. I myself, take Plaquenil for Lupus.
Dr. S. (in the USA)
Thank you so much. It has been great to get so many positive replies. I'm so grateful x
I wish you much luck and hope the Plaquenil helps. I am sure your Dr. made you aware that you must have an eye exam AT LEAST once a year while on this med. (especially after 5 years or you have accumulated a dose of 1000 grms over the years) About 1% of patients will develop what we call "bull's eye maculopathy"..........it is due to the binding of melanin in the retinal pigmented epithelium (RPE). If this is detected YOU MUST STOP THE DRUG IMMEDIATELY. It (infrequently) has been shown to cause blindness.
Even though I know the potential ramifications of this drug I take it because it helps my Lupus symptoms a great deal. Sometimes the risk is worth the reward.
Dr. S. (retired Neuro-Ophthalmologist in the USA)
P.S. Plaquenil has been proven to not only help vasculitis due to Lupus but also proven to extend one's lifespan.
Hi, thank you so so much for this great advice. I know it's scary but I want to be informed as much as possible. I have Lupus, Sjogrens, Reynauds, APS and Hypothyroidism! I have suffered for a long time but because of the belief that o was allergic to Quinolones they wouldn't prescribe Hydroxychloroquine! However after taking a supervised allergy challenge they think I may be okay. Everyone has been so helpful. Thank you for taking the time to reply and for your comprehensive comments x
I can sympathize - For now you have me beat by two dx's! (but I do have the antibodies for APS, so I'm sure that one is imminent).
Fingers crossed I don't develop Raynauds - my sister has that and my dad shows signs of it.
Ugh!
Yep these autoimmune problems are diseases that just keep in giving!!! Hopefully I'm done now with my long list and I won't add to it. Who knows though! Positivity is sometimes hard to find. X
I hope so , too, for both of us!
Yes, staying positive is a challenge BUT, that, my friend, is EXACTLY why we are all on this site! I like knowing I'm not alone in my struggles and that encouragement and guidance are a keyboard away....
Indeed. These sites are an invaluable source of guidance and support. It's always good to know that with a few clicks you can speak to somebody who genuinely understands. Thank you so much for your input x
I will be having an eye test yearly my Optometerist told me. X
I was having terrible nightmares with the generic. It was helping alot but I had to stop. My new Rheumatologist just started me on brand Plaquenil due to bad press about generic. We will see
I really hope you get on well with Plaquenil and the nightmares stop. I used to take Amitriptyline but had to stop due to hideous nightmares! X
I can't take Quinoric it gives me stomach ache, so I have a note on my prescription to say I can only take Blackrock pharmacy.
I think so many people have had problems with Quinoric. I will be sure not to get this. Thanks x
I know us Lupies are sensitive when it comes to meds and the like and I have taken just about every kind of Hydroxy out there since I was diagnosed in 1987/88. Occasionally they do still cause stomach upsets and cramps but as we all do I have found my own solution which suits me. I have always been told to take my Hydrox on a night but it is usually the following morning when the upsets starts. Quite by chance during one episode we were in a hot spell (what in the UK?) and I had a couple of ice-pops before I went to sleep and the next morning had no upset, I tried again for the next few nights and had same result, no upset. So now if I do get a morning when my stomach is bad with the meds then that same night I am on the ice-pops lol. OK seems queer I know but works for me and may just help someone else hopefully
That is so interesting, I wonder how that works! It's really really useful to know though, thank you so much. Everybody has been so overwhelmingly helpful and kind, I am so grateful. I have heard the drug should be taken at night too, I will see what I am told tomorrow. I believe I will be starting taking it x3 days a week to start with and building up from there. Hopefully I won't have too many problems...... we will see x
Hi Caleb,
I am a little late in responding to you sorry as I see you were due to see the doctor today. I have been taking Hydroxychloroquine since 1991. I take 200mg x twice a day. I always now ask for Zentiva brand as the Quinoric brand upset my stomach too. You should always take this with food and never on an empty stomach. I also advise you not to take any indigestion remedies less than 4 hours before or taking the Hydroxychloroquine. I found out the hard way having been prescribed Omeprazole as I have a dodgy stomach and neither the doctor nor the pharmacist advised me of this. Good luck with everything.
Thank you for your response. It is interesting to see how many people have had problems with Quinoric! Imagine though without this site if you did not know it may be a particular brand and you just carried on thinking all Hydroxychloroquine made you feel like that! I have visited the GP and I will post about it shortly. Thanks again x
Thank you to everybody who answered me, it was so appreciated. I visited the GP yesterday and have now commenced Hydroxychloroquine. I talked to her about the various brands etc and she made sure the prescription said Zentiva brand only. I went to the Pharmacy who wanted to give me Bristol Brand? I refused. After showing him the info You lovely people had provided and the PIP number he then ordered in Zentiva for me and I got it last night. He said should be no issue from now on he will automatically order that one. I have been commenced on x3 tablets 200mg weekly to build me up as there is concern about my previous reactions to medication and my ability to tolerate this drug! I took my first last night, no issues. Took with milk as advised and after food. My question is, do side effects (if you have any) build as the levels increase after each dose? Or if any effects were to be experienced are these pretty much from the outset?
Thank you
Maxine x
That's a high dose to start with. I started on one 200mg for 2 weeks then one in the morning and one at night for a month and as this was fine I can now take both at once. I've not heard of three as a starting dose. My rheumatologist tells me that most reactions occur in the first few weeks then settle if they are going to.
Really. It's 3 tablets per week, not 3 tablets per day for a week?
Ah. Ok. I misread.
As in 1 tablet miss a day, then one, miss a day etc!
I've been taking hydroxy since 2005 and its suited me very well, I have mild SLE. The only time problems came up was when the chemist sent the quinoric brand which made me feel unwell. My gp put plaquenil on my prescription to make sure they didnt send it again and alls been ok until a few weeks ago when I started getting severe pain and constipation. Checked my pills and sure enough its quinoric again...phoned the chemist who changed it back ready for the next delivery
Anyone know how long it takes for the stuff to clear from your system?
Hello. I had Plaquenil for years then it was no longer available. I get Zentiva which is similar from a lovely local independent pharmacy. Lloyd's and Boots just get the cheapest brand available. Hope you get sorted. It's all the same drug just different binders
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