I know Mary F is guru level on this subject- I took her pip and manufacture info to pharmacist and we are having trouble with translation. We can't get the same . We have several different companies that produce it. Does anyone know which one seems to go the best with a sensitive GI system?
I've tried the plaquinil twice now- with low level titration up. Target to 200mg. Starting with 50mg. The first days dose of 50 mg yields a very ill gastro system within 12 hours - you can set your watch by it.
( I also had a Stevens Johnson's non necrolytic ( thank goodness) reaction to lamictal - at high titration for seizures. My neurologist said no meds with Stevens johnsons reaction warnings- but... ... ...? My rheum just took me off it . I'm thinking if there is a better one? Better formulation? I've never heard of this before Mary mentioned this here on this forum.
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I asked my pharmacist in the US about this, but the only answer I got was I had to buy the generic, and I know they switch around which generic they are giving me.
Fortunately, I didn't have a problem with it when the only thing available was the brand name (except the price), or now that I'm taking the generic.
FYI... In the USA, there is the name brand pill (white flat capsule shape stamped Plaquenil) as well as a generic (same white flat capsule also stamped Plaquenil). The two pills side by side look EXACTLY the same.
They may look identical but they are NOT the same since with one (name brand) I have zero issues but with the other (generic) I do.
I also get mine filled at CVS and had to get prior auth from my insurance to get name brand only. My rheumy also writes "no substitutions" on the script.
There's a HUGE price difference between the name brand and the generic. If you are not paying a lot of $, then you are getting the generic - which if the case, it isn't an issue since your aren't having side effects. I am not so lucky but will only take the name brand despite the cost.
Gosh Guru, actually it is Hidden 's turn to be guru! Plaquenil suits most people the one made by Zentiva “HYDROXYCHLOROQUINE SULPHATE (ZENTIVA) 200MG FILM COATED” and the ‘PIP number’ (Product Code) is 1201730.
This is supposed to have less fillers, my daughter is fine on it, I am not, serious reaction as I do have to most drugs now. I am not sure of any better one, only different drugs such as quinoric. I am on LDN now but I found this myself and pay for a private prescription, it suits me fine, However my approach is not for everybody, apart from 2 x Aspirin and day and Fragmin if I take a long flight I take a host of natural things and have done for years.
Are they clear which drug you are reacting to, the seizures one or the anti malerial, as they need to be clear on that I would think.
Clearly if you are having Stevens Johnson type events great care has to be taken. MaryF
Yes, I was removed from the lamictal immediately. ( 4 years ago.) it's very clear it's the plaquinil. I have not had the chance to calmly my rheumatologist yet.
Today was the first Monday back after what we call " spring break." One full week off of school here. The entire extended family, minus me , who had hematologist and internal med appointments...) went skiing in the mountains of New Mexico.
so back to school for the 15 year old. And all the things the aforementioned escapades entails. ( like 534 loads of laundry.)
I called my Rheumatologist's office and talked to the physician's assistant's assistant. ( got that?)
Chain of command is a little strung out at this clinic...can't quite keep up with all those apostrophes.
The assistant to the physician's assistant told me that the physician's assistant only knew of plaquinil as a help for APS, and no other medication. ( inset eye roll here.) I had to explain again and then got called back the next day.
Actually the assistants Assistant (Marissa) was intrigued. This was a new concept for her. The PA ( Jennifer) was aware there were multiple manufactures , but had never heard that certain manufacturers tended to formulate in a way that had less adverse side effects than others, or of actual brand plaquinil itself seemed to have less adverse side effects.
Marissa had gone on line and couldn't find anything in US manufacturing- but I did tell her about zentiva and indeed she couldn't find it in the states but did find info supporting that patients tolerated it better. She really was blown away there could be a difference. She is extremely interested in this concept.
I'm just going to have to talk to my actual rheumatologist when I see him next- in August. He may very well have heard back from patients or know of studies on this.
I am on Lamictal for seizures and all is good with that but no matter what brand of Plaquanil I am given I can not tollerate it in any way - for me no stomach upsets but it effects my Neurological system, so creating the very problems that the lamictal calm down. I was also told that we can be highly sensative to so many things with autoimmune problems - I am left unable to now treat the Lupus/Sjogrens but am hoping that the Hughes treatment will help as I was also told the Neurological issues could be the result of untreated Hughes.
Have you considered Mepacrine, I know its not as good but could it be an option?
I will ask about this as I know I really need to be on the plaquinil. Thank you. Likely the neurological issues are a result of Hughes. We certainly feel mine are. The medical consensus is adequate blood/ oxygen supply is needed for the brain to properly function at 💯%!
I did some further research on Plaquenil brand in the US. It is apparently put out by a company called Concordia (I think they have bought the Plaquenil brand). It is really expensive, even with a coupon from GoodRx ($400-$500 a month).
Here is an article from Lupus.org from 2015 when there were shortages, but it explains who sells it in the US.
Thank you! Yes. This print out is the one I had taken to the pharmacist last week. It's U.K. Friendly; not USA. We don't have this manufacturer. I went back to a more senior pharmacist today with all of your information. Concordia indeed is manufacturer of brand plaquinil. I now have a print off of all manufacturers of generics. I'm going to call my rheumatologist and ask if he knows of a particular one that's more tolerated with regards to GI upset. ( USA brands.) I'll keep you all posted. Thanks to all!
It was the plaquinil that give my GI system fits and the lamictil for seizures that caused the non necrolytic Stevens- Johnson's rash. It's just interesting that there's a warning on the plaquinil...but my skin was fine. But it was only one dose wash time I tried that I had to call it quits.
Follow up as promised: FYI:Well this time I did mail order and it is stating this is the generic. I look at the pill it is stamped"plaquinil" on one side with nothing, no numbers or anything on the back! Sorry, I was hoping to have more info!
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