Why did I bother!? Anyone from Stoke on Trent here?

Is there anyone else in stoke on Trent with this lupus? And how you do find your doctors are with you?

I went to my doctor today because I was given quinoric after being on plaquenil for a month and it didn't agree with. Very upset, painfully tummy. My doctor told me he cant change the prescription to say plaquenil because it's down to the pharmacy and what they have in. The pharmacy say this isn't true. My doctor also told me he knows nothing about lupus and can't help or advise me on anything. He's the second doctor at my practice to say that as you never see the same doc twice where I am. They say I have to talk to my rhumy but my apts are months apart. I give up ive come to the conclusion they just don't care. I have no idea who I'm supposed to talk to when I'm not feeling well. My rhumy said go to the docs they should keep an eye on you and the docs says see rhumy cos he doesn't know anything.

Sorry to moan I just feel let down and unimportant.

Casey x

17 Replies

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  • One answer change doctors and put in a massive complaint of negligence against those for failing to at least some basic understanding of a patients condition .

  • hello casey

    I think its time you found a different medical centre,i would definatly change my docs. if my doc said to me that he can t help and knows nothing about lupus then i would have said well tell me where i can find a GP who can.

    i mean my docs no expert on lupus but he has never once not tried to help me and has answered all my questions and he has even got his medical books out so we could look through them together.

    i find it such a shame that you do not seem to have more support from the people you rely so heavy on, i think its disgusting that you have been left feeling like giving up, but you must not!!! its very important that you find a different doc who can support you even if it means seeing someone slightly out your area.

    as you said rheumy docs app are months apart but they are there to keep an eye on our organs and the process of this disease, where GPs are there to help us cope and listen and make sure lupus has not taken a turn for the worst

    can you not ring up your rheumy nurse or his secretary and ask if he can give you a prescription for plaqueil instead, and explain that you are having tummy trouble on quinoric.it might be worth a try.

    i wish you luck

    debsxx

  • I'm gonna ring the nurse tomorrow and explain it to her. I feel like they think I'm being a pain but I've only had contact a few times and that was when I was given the results of my blood tests and told I have lupus, then given the tablets by a nurse. Then a doctors apt to check on tablets 2 weeks after starting them, his computer was down and just said I should really see a rhumatologist and he didn't know what to advise me even tho it was the rhumy that wrote him a letter to check my medication. Then my second rhumy apt with a different rhumy than the first, when she said I also had sjegrons syndrome. And my apt today with my doctor to tell him the quinidine made me feel really bad.

    I feel better for just writing it down here to be honest, my family care and that's the most important thing to me. Thanks for your support too debs and medic1969. It's much appreciated :)

    Casey x x

  • l was on plaqenil for a few months when the phamacist made up my presciption, and had given me quinoric, l tried for a month but felt awful, stomach cramps, felt so sickly. When l asked the phamacist about having plaquenil she said to go back to my Doctor and ask him to put on the next prescription, Plaqenil and not just Hydroxychloroquine, I went to see my Gp and explained what the pharmacists had said, and he was quite happy, and now every prescription l get states Plaquenil. Good Luck l hope you can get it changed, why should you take a drug that does not suit, when there is an alternative availabe to you. x x

  • Hi ya my first prescription was plaquenil and I felt fine with it. The second was quinoric I'm still taking the Quinoric and had an upset stomach for over a week now. Didn't realize until reading your post that it could be that. I don't quite understand thought they where both the same drug.

  • hi there

    You are definately being let down by the system.i have a rhemy nurse who is an inbetweener so if i have any problems i ring her and she general sorts it out for, you need to ring the hospital and find out if they have a nurse specialist for rhemy and ask to talk to her in view of you being seen by her. hope this is of help to you

    take care angie xx

  • Hey collette if you read my question from the other day 'plaquenil or quinoric' there is a lady who's husband is a pharmacist and and he says it's some thing to with with the fillers they use, the active ingredient is hydroxychloroquine but they use different ingredience to make them into tablets. :) x x

  • Thanks Angie. I'm going to ring the hospital in the morning to see if I can just talk to someone about the tablets. I hate complaining and very rarely visited the doctors unless I was very bad, the last 7 years I have been for pleurisy twice and swollen neck glands once and then my face rash appeared quiet severely which led to diagnosis. Wish I could go back to ignoring it but my mum says that's denial, well denial was working ok for me lol. Fingers crossed for tomorrow. x x

  • Hi Casey

    I had the same issue with quinoric. It also left an awful taste in my mouth. Luckily I mentioned it my GP, he wrote out a new prescription for plaquenil. He looked it up and said quinoric is now the default brand. He thought it might be because quinoric would be cheaper to prescribe. However, when he checked, they are in fact the same price for the surgery. You are entitled to ask for a specific brand, and, where the price of the drug is not much different, the GP should give you the preferred brand. I suggest that you politely tell your GP that you are not tolerating quinoric, and that you need the plaquenil. Alternatively, you should have a contact for your Lupus nurse. Ask him/her to issue a prescription for you. Best of luck

    Fuzzy

  • Hi Casey

    I started off on Plaquenil and went to the pharmacy with a prescription for Hydrocloxychlorin and they gave me quinoric as it is cheaper. It gave me terrinble heartburn so i went back to doc and asked for a specific prescription of Plaquenil and dont have the problem any more. Hope this helps.

    Kelly xxxx

  • there is a contact in your area Linda Bache 01782 822820

    Hope all will work out for you.

  • I rang the nurse the doctor gave me the number for apparently she's my nurse. She just said they are the same tablet with a different brand name and to take one a day for two weeks and if that settles things then go back to two and if it comes back then I might have to go on something else. Oh well I tried. I guess a big fancy hospital in the area is more important than the patients in it.

    Thanks for all your replies I appreciate them all :)

    Casey x x

  • hi Casey

    i have just read your blog,i was told the same as you and it is annoying.

    In Dec i ended up in hospital with my stomach,i thought i was a gonna as i was so ill.

    The doctor i saw that night said it was my tablets that were affecting my pancreas.

    When i was discharged my gp came to see me and said no the tablets have not done this it is the ibs that is making me ill and not the tablets.

    Since then i have to take Omeprazole for my stomach as well as all the other tablets.

    i had no problem on plaquenil and i am seeing my gp on Thursday and i hope he changes my prescription as tonight i am in so much discomfort with my stomach.

    Let you know how i got on

    Lornadoon

  • Oh Lorna that's awful, they should of spotted that so much earlier than you being in hospital with pain. I don't trust my doctor anymore, I feel I get better information on here from people with real first hand experience of the disease. Even my nurse fobbed me off saying the tablets are the same. But I know they aren't.

    I hope your doctor listens to you on Thursday, let me know how it goes :)

    Casey x x

  • I had the exact same problem a couple of weeks ago.After 8 years of repeat prescriptions for Plaquenil without any problems I was suddenly without warning given Quinoric.I did not react at all well to this drug,suffering blurred vision,headaches an hot flushes.I called the Dr about this who told me to return to the chemist to get it exchanged for Plaquenil.The chemist refused to do this stating that the patent for Plaquenil had ran out and it is now a free market for replica drugs of this kind.He also admitted that Quinoric is a cheaper version of Plaquenil and if I specifically want Plaquenil,it must be stated on the prescription.I did eventually get a dr. to agree to state Plaquenil on future prescriptions.

  • Moontree,,hey i have to say i agree with all these posts!!At my docs is the same,,never the sane doc twice and they all have to get there text books out etc!!lol,,,,, y ou have i believe been treated appalling and i would change if were me. i do hope you get this sorted out ,,,i think when i first was diagnosed back in August i was prescribed Quinoric,,and yes when the next prescription was for Plaquenil i thought was the same drug,,i must say yes,the first three months on Quinoric when i look back were awefu on my tummy,,and the last few months have seemed better on Paquenil!!We have to remember Hydroxy is the drug,,and the others are just the generic names!! Good luck hun.x

  • Hi Casey

    Sorry to hear how difficult it has been for you. Like the others I would recommend that you change your practice , and I know what you mean about always seeing a different rheumatologist. The rheumy nurses are your best point of contact and well worth talking too. They can see you themselves and if necessary get you an early appointment. It was my rheumy nurse who spotted something wrong, recommended tests, and picked up on cancer, so they can be very on the ball.

    I had the same problem with Plaquenil suddenly being replaced by Quinorinc. Had problems with it. And there was quite a lot on this website. Asked my pharmacist who sat down with me and went through all the ingredients. Reckoned fillers were the problem. Checked price - only a few pence difference and since then has always ordered in Plaquenil. Occasionally apologises for delay as he has returned Quinorinc. Pharmacists are much more involved in medicines management now.

    Sorry, I've gone on a bit, but if you can't talk to people on here, who can you turn to.

    Margaret

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