Lupus UK nurse did not know about the difference, worrying

[Liberton]

I recently attended to see my rhemu consultant and on arriving at the hospital department I noticed that there was a Lupus UK stall set up manned by volunteers. Whilst waiting for my appointment I was approached by a female who informed me she was a nurse with Lupus UK in Scotland and wanted me to add my details onto their database. She also was present during my consultation. I mentioned to them that I was still having problems with Quinoric and asked my rhemu could she write to my GP confirming that I should receive Plaquenil. Both the Lupus UK nurse and the consultant were totally unaware there were any side effects with Quinoric that were making life a misery for a number of Lupus sufferers. I was extremely angry that this nurse who is covering the whole of Scotland had not heard about these problems with Quinoric. I was not best pleased with my consultant either.

[pattismith]

Don't blame you , l spoke to my pharmacist yesterday saying they had sent me Quinoric this time instead of Plaquenil, he tried to tell me there is no difference its just a generic drug, l told him in future l didn't want the Quinoric no matter how cheap it is, he said it just depends which drug company the Gp is using at the time ?

[Barnclown]

hi pattismith

my understanding is that if you can get your gp to stipulate plaquenil on your prescription, the pharmacy has to supply plaquenil. there has been lengthy discussions here on this point relatively recently this summer. e.g. my repeat prescription list on both my pharmacy's website and on the paper copy given to me with each repeat prescription lists plaquenil, not hydroxychloroquine. the only time i have received quinoric, was when my rheumy gave me my very first prescription in june 2011, and i very quickly got my gp to sort that out and specify plaquenil. i now gather that patients with upper gi symptoms can be the ones to find quninoric especially disagreeable. this is why i will do everything i can never to take it. i hope you can sort this out with your gp

hi liberton

thanks for posting this info re that lupus nurse & your rheumy claiming not to understand about the diff between plaquenil & quinoric and that there is a side effects issue: i am speechless! how could they not be aware of this? well, at least they are now: well done, you for enlightening them!

[SarahHeney]

Hi. I can help as I was a volunteer on the stand that day. I also funnily enough live in Liberton. I am also on the South and East Scotland Lupus UK Commitee. Lupus Uk has funded the post of a Research Nurse to cover Scotland and create a databank of all Scottish Lupus patients, their symptoms etc as at the moment there is no centrslised bank holding this information to give effective statistics regarding lupus in Scotland and thetefore aid effective resesrch towards a cure. Her name is Catherine Paterson and she will have handed you a leaflet prior to your consultation explaining the research bank and inviting your involvement. It is something that has the potentisl to benefit us all in the future as so little of this detailed information and comparisons currently exists. All the consultants have formed a working group avross Scotland to support this project so for the first time ever they are working as a team across all Scottish Hospitals. It was explained to us at the Lupus Uk AGM. Worth joining LupusUK. They run this site and have funded the Lupus Research Nurse post. If you have questions regarding lupus meds ask to speak to the lupus nurse practioner at Dr Amfts clinic who should be able to answer quedtions. Pharmivists ate also a fount of knowledge especially at Flemmings Pharmacy in Liberton. Hood luck x

[Liberton in reply to SarahHeney]

Hi Sarah,

I remember seeing you there at the WGH. Many thanks for your reply

I am not sure if you are defending the actions of the nurse and since you have mentioned her Dr Amft in not knowing about the differences in the two different Hydro drugs. However I would have though that a nurse in that position might have known that there were differences and that there were patients that were or have suffered problems with Quinoric. Also I would have expected my consultant to have spent sometime researching the drugs that they are prescribing to me.

Just my opinion for what it is worth

[hazelHollingsworth]

I had severe reaction to the Quinoric, terrible digestive problems and my Teeth turned Brown. I phoned the pharmasist and told her, she refered me straight back to the doctors to get them changed. They at first insisted they were the same, I said if I was not changed back the SAME DAY I would be sending the the bill from my dentist for the teeth cleaning. They changed it the same day. Good luck. If they cause you problems you had the RIGHT to get them changed. I am on the local Patient Partissipation Group (PPG) and brought this up at a meeting. The doctors said -Yes they change to cheaper medication when they can, but Yes they have to swap people back if the alternative causes them problems. Good Luck.xx

[SarahHeney]

No not at all. Just highlighting her role as a researcher on our behalf, not there to treat patients but to gather information that will hopefully benefit us all in the future. Interestingly my Pharmacist has been very helpful and always secures Plaquinil for me as he knows the uncoated cheap version makes me sick.x

[scoobydoo1]

I have experience of research nurses, most do research for a reason. make of that what you will

[Hidden]

I have posted a lengthy report on the yellow card system for serious reactions to drugs

They have sent copy to my Gp practice. Quinoric made me ill for months even though I was switched to Plaqunl after taking it for 3 weeks. The fillers in it should not me given to people with autoimmune disease.

[Voutton]

The first time I took quinoric it disagreed with me so I complained and got. Plaquenil I was then put on folic acid tabs for the methotrexate so I don't know if that along with the omaprazole has allowed me to be able to have no problems with the quinoric which is what I was given on my next prescription I believe it is the coating that is around the tablets that is causing the problems It is all money but if we need to take another tab to counteract the effect of the cheaper one Where's the logic plus what are we doing to our stomachs Just I need metho at the mo or I would not take the quinoric

[lupienat]

maybe the research nurse for lupus UK, should do some research. The problems with quineric are nothing new and have been well documented by patients with lupus and the top rheumatologist in the UK agree. When are we ever going to be listened too???? What is the point of having a research nurse out of the funding from lupus UK if there is no research happening even down to medication. Oh god im loosing faith in the whole system!

[butterfly1000]

I think this is a bit harsh. Sounds like she's employed to collect data - in a role like that I'd hope she'd be trained in data collection. I'd also hope she'd have an interest in lupus and be keen to learn about such things as the Plaquenil vs generic brands issue. How do you learn these things - by listening and sitting in on appointments etc - which was exactly what she as doing. The consultant on the other hand...

For what it's worth - I lived in Liberton up till 3 yrs ago.