Hi everyone its a massive OMG moment someone please remove me from my ceiling.
I put in my repeat scipt to my doctors which went to the pharmacy. On collecting yesterday even tho my consultant has plaquenill on my letter to them they decided to change it to Quinoric, on going to inform them of this and to get it changed back, i said to the girl on the desk i need plaquenil as per my letter she turned around and said, " we dont make any money on plaquenil so you have been given quinoric as its cheep" because i had run out of plaquenil last night i had to take the the quinoric i informed her it made me sick, i told her this and she said its not her problem its all about making us money..oh i was so angry so i rung my lovely rheumatology consultant, she to was not impressed and explain this was totally not aceptable, she informed me that even tho quinorc and planquenill do contain the same active ingrediant in equal quantity, 200mg of hydroxychloriquine. There ia a massive difference in the fillers, in Quinoric there is silica (colloidal anydrous silica) which herself has seen links to autimmune diseases and this silica has an established association with lupus. She told me do not take them and she will be writing a letter of compaint to the pharmacy and doctors gp about it, she was going to lunch and droping a new percription to the hospital pharmacy for me to collect this afternoon, i couldnt express how gratefull to her i was, so now shes making sure im given the right ones, in her words " why change something thats working for my patient, and who gives them the right". I had zero spoons today after going through that thismorning, but my rheumy have just given me her spare ones......i have free scripts here in wales, but would have paid myself if it meant i could have had my planquinel as per rheumy instructions.... Im sharing out some spoons and hug to everyone on here, i dont know what i would do without you and your information xx hugs
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willowwag
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Good job we can all stick together and advise each other on here. People often think we are weak and a pushover because we are ill- all the Lupies l know are the strongest people around ! Just as well as we have to fight not only our illness but all the ignorant people around us making things even harder. Well done you for getting it all sorted and not sitting back and letting people dictate to you, enjoy your well earned rest
I too had a very similiar experience when I lived in Wales. I have SLE and Hughes Syndrome. Unfortunately, I am allergic to nearly every type of medication that is available for Lupus/Hughes. So when I had my anticoagulation meds changed to a "cheaper" brand without any consultation with my Specialist I had a small stroke as a consequence. It turned out that although the medication was "deemed" to be the same, the coating they used on the tablet was different and it made my blood thin to the point that I really thought for a minute or two that I might die! So in the end a free prescription in Wales cost my health authority over £25,000 in hospital treatments and physio afterwards!!!! Fortunately, I recovered but one day I'm sure we will read in the news the now famous and often used phrase "We will learn from our mistakes!" Need I say more?! Good on you Willowwag for sticking up for yourself. Sending love and hugs for a well earned rest for you from here InSpain xxx
Hi pattismith and inspain thanks you for your messages, its terrible that the gp and the pharmacys think they can just give us a cheep replacement just to make some cash, must say tho wouldnt like to get on the wrong side of my rhuemy lol shes got a sting in her tail lol! Sounds like shes going to take this full on with the gp, so sorry you had to bare the brunt of this happen to you also Inspain it sounds horrific what happened to you and like patiesmith said us lupies need to sick together and inform others, to save other lupies geting a ruff deal with our meds xx hugs
I went to see my GP today and mentioed that originally th hospital had given me plaquenil qnd when he started my repeat prescription the pharmacy gave me Quinoric. GP said pretty much what you said he also blamed the pharmacies who when I spoke to them today blamed the GP ...see you can't win... xxx Uzi xx
OMG! Have just read your post willowag and can't believe I've been put on some cheap c**p to make a bunch of pharmacists money! .....fuming! ....as if life isn't hard enough as it is without added problems of cheap drugs which make us feel worse. Will be seeing my GP ASAP! ...thanks so much for the info xxxx
At the time my specialist suggested that I pointed out to my GP and pharmacy that I would hold them responsible for anything that happened to my health in the future if my medication was changed in anyway without consultation with my Specialist Team. It was amazing how this made everyone sit up and listen! I agree with you Pattismith we all need to send out the same message so that we are all treated with the respect we deserve.
Hi all, been reading your messages back and im so glad i posted this, my rhuemy is one awesome lady, shes writing a letter of complaint to the lloyds pharmacy yayy to stand up for all us lupies, i even had the hospital ring me saying they have a script ready for me to get in the morning, i think my rhuemy had even told her because, she said they have done 2months planquinell for me, so by the time my rhuemy gives the pharmacy hell, my new script will say intollorant of all hyrdroxy apart from planqinel to get them again for my docs, really glad cause i think i will lose it with the girl behind the counter...i was so angry this morning you could have scraped me from my ceiling lol. Lesson to myself open the pack to make sure its planqinel. If this has done one thing to me its made my fighting spirit come back. Hugs to u all xx
Belee let us all know how you get on, tell your gp about the silica and its link to our condition x
In light of Willowags problem thought this might be helpful. If the Dr. specifies a certain drug by its manufacturers brand name rather than the "generic" name, then the pharmacist should prescribe the drug as written and should not change it. For instance if a doctor writes a generic name such as paracetamol instead of the manufacturers name Panadol, it allows a pharmacy to supply the cheapest version of the paracetamol they can get. To be fair, most doctors are meant to prescribe generic versions of a drug if available, in order to save the NHS money and also the health providers money on their drug budgets. This means that there is more money to go around on health care for all of us and generic drugs save millions of pounds for the NHS. But a pharmacy giving a cheaper generic product when a specific brand manufacturers name has been written is wrong. They should not do it, at least not without speaking to the doctor directly, and they will certainly be aware of that. As you have said there are people who cannot tolerate certain generic drugs and need the original manufactured versions of which I am also one. The Dept.of Health has also confirmed that brand names should be used for prescriptions where the prescribing of cheaper generic drugs will cause problems or confusion for the individual. Good on you for sticking out for what is right and sorting out the pharmacist.
I'm vvvvv glad to read this ? And all these great replies. When I was re-diagnosed with SLE 2 years ago, my vvvv lupus-experienced rheumy wrote hydroxy on the prescrip. Boots pharmacy gave me unoriginal. Although I'd never even heard of lupus until several months before that point, I had discovered in the meantime that most of us take plaquenil. When I read the Quinoric leaflet I realised it could aggravate the considerable upper GI probs I mnage constntly with due to years on NSAIDs & prescrip pain killers: my rheumy knew about my upper GI, but I guess was willing to leave me to take whatever version of hydroxy I was dispensed. Well, I took the Quinoric right back to boots, talked to the pharmacist herself, who reluctantly agreed to give me plaquenil due to my upper GI conditions. Phew. Since then, I've been following any post on here about the Quinoric/plaquenil issue. This particular series of posts has been one of the most constructive & empowering: thanks everyone. KNOWLEDGE IS POWER!
sorry for all the typos! replying too early, brain not in gear. also, forgot to say: my gp has had no prob at all about specifying plaquenil on my repeat prescription form. once i asked her: is there any chance our surgery may go over to qunioric to make savings? she looked at me blankly and said: not that i know of...
I have taken both. Quinoric gives me tummy pain and makes me feel sick. Plaquinil is fine. My Pharmacist said its because the Plaquinil are coated. So sorry you had this experience x
Hi all, just called into my hospital to pick up my emergency script and the pharmacy manager handed them over and said well done lol! I looked at him blank at first well done what did i do lol, my rhuemy had told him about my local gp pharmacy and he said they are well known for giving people any form off hydroxy even if its marked with planqinell, he was telling me that hes had alot of patients being given these other tablets by this pharmacy. And of all of the lesser branded brand name quinoric is known to make some people feel rather ill, hes given me the pink slip and in massive writing its got PLANQUINEL NOT TO BE GIVEN ANY OTHER BRAND! bless could of kissed him.
I would just like to thank everyone for their posts, and for being here to know your not alone with lupus and to have amazing support which this sites provides and to know we can all share our experiances is helping me cope with lupus, group hug to you all like barnclown said knowledge is power.
Hi all, well I spoke to my GP yesterday and was informed that as I'm newly diagnosed and only just started on quinoric (2 weeks ago) I need to give it more time to see how I get on with it. Apparently my body needs time to get used to the drug! I've never had plaquenil so she said it may be no better for me anyway....very frustrating. I told her about my sickness and tummy pains being worse since starting the quinoric and she just repeated that I need to give it more time. I just hope she's right as I really need this drug to work. Am trying to take my 3 kids for a day out today for the last day of the holidays and all I really want to do is crawl back into bed
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