Quinoric

[Mandypandy1969]

I was in Quinoric for 9 weeks. phoned rheumy nurse helpline and told her I was feeling a lot worse on it. she ummed and arred about it between another nurse. she then suggested I came off it just like that and to see my g.p. again. been off it for a week and certainly don't feel worse for coming off of it. just back to square one before I went on it. can't get to see my g.p. till 16th December. I really don't know if I am being treated for the right thing. I have no rashes, no joint pain. I have muscle aches all over my body. heaviness in arms and legs when trying to reach, lift, bend etc. awful sensitivity to light, sounds and smells. I am driving myself nuts constantly searching the internet which I know isn't good but I am desperate and need something to help with my pain and the uncomfortableness in my body along with the severe fatigue. any info would be much appreciated.

[Mandypandy1969]

also my memory is terrible/short time wise. I don't feel with it half the time. I can't concentrate and take information in. learning new stuff is a nightmare. I can't do it. my e.s.a. benefit has been stopped and now forced into j.s.a. I am in no way capable of holding a job down. I have done the mandatory reconsideration and they have not changed their decision. I am now going to go down the tribunal route which is stressing me out big time along with this illness, whatever it is. I have been told it is a suspected autoimmune disease. lupus was mentioned but it's not a confirmation of a diagnosis to me.

[Hidden]

Alot of people cannot tolerate the brand quinoric, myself included. Might be worth trying plaquenil or hydroxyquine sulphate (same meds just different makes) its changed my life. Hope you get sorted soon x

[soootired]

As has been said, there are many of us who can't tolerate "quinoric" this doesn't mean we can't tolerate hydroxychloraquine. I'm sure you've already been told that Quinoric is just one brand of hydroxychloraquine, there are others and the others don't cause so much trouble. Plaquenil is another brand, zentiva another, I use a generic brand by blackrock pharmaceuticals which is fine, the tablets are a yellowish colour and don't taste vile like quinoric do or cause me any bother.

It might be worth asking your pharmacist to try to get you one of these brands - zentiva and blackrock apparently cost the same. Sometimes you just need to be assertive with them and tell them if they won't you'll go somewhere that will - that's what I did!

[Mandypandy1969 in reply to soootired]

ok. thankyou. I am due to pick up my tablets today. I am not getting much help. my g.p. ignored what I said. I am waiting for rheumy nurse to call me back after being off Quinoric for a week now. I am worried sick that I am feeling worse. x

[Bacardibabe76]

Is it worth trying another brand of hydroxychloroquine? Quinoric does not have a good track record and I can’t tolerate it. The best one is Zentiva but it’s hard to get a hold of at the moment. How about trying Teva or maybe blackrock?

I would try them before giving up, also it can take up to 12 weeks or so to feel any benefit from them.

[Mandypandy1969 in reply to Bacardibabe76]

thankyou. my doctors surgery is not helpful at all. I said about another brand and it got dismissed. didn't want to know. I am so tired. I feel drunk. not safe to drive either. I have just missed a call from rheumy nurse as had to go bloody job centre who are starting to pressurised me. I need something as i am now on nothing. symptoms are worse than ever. no different before I went on to Quinoric and they made me even worse. x

[chrisj in reply to Mandypandy1969]

Have blood tests shown any low vitamin levels Mandy? I had some of the symptoms you describe because my vit D levels were below par. My then rheumatologist picked up on it very quickly. Since taking a precribed supplement I've felt much better

It affected my muscles especially upper arms, breathing, felt tired and had a general malaise..feeling unwell. Might be worth a blood test??

[Mandypandy1969 in reply to chrisj]

I don't know. x

[Bacardibabe76 in reply to Mandypandy1969]

Your prescription should state the actual medicine not the brand (unless you are advised to have one brand only) so it should say hydroxychloroquine. It is the individual chemist that decides which one they will give you. So before you put your script in ask which brand it is and if it’s quinoric ask if they can order another.

So you should be able to just get a normal prescription. Mine used to just be generic too until I asked for specific brand.

[Mandypandy1969 in reply to Bacardibabe76]

I have to wait to hear from rheumy nurse now tomorrow as missed call today. Will wait until I have spoken to her. my pharmacy not helpful to be honest. x

[JanW]

It makes you wonder about rheumatologist's doesn't it and their insistence it takes 7 years for diagnosis, and for me this was after I had first seen mine and she said I had lupus, but had to have biopsies to prove, despite ANA's rampant in blood work. I was diagnosed for now as having multi deferential skin desease, then when I last saw her she said she thought it was fibromyalgia...

Don't loose heart these so called experts seem to have the same brain fog as you - and I my memory is not great either.

I agree with others, take the Hydroxychloroquine but insist on a different brand I use the Quinoric and agree it's not good. If I were you try and relax forget about searching the Internet, fatigue is the main cause of lupus and from my experience doesn't go away. Like many health problems there is not always much we can do but manage it, and there in lies the magic work, manage, accept, get help when/if you can and enjoy your life the best you can.

I wish you all the best, take heart a good day often follows a bad one.

[Mandypandy1969 in reply to JanW]

I haven't had scans or anything just blood tests. only seen main man once who diagnosed me with suspected autoimmune/lupus. not a certain diagnosis. I was just put on hydroxy and been on Quinoric. saw rheumy nurse last time. why have I not had another appointment with him. I have so many symptoms, I need to see him. they don't seem to want to give me an earlier appointment. ridiculous. I am in no meds at all now. back to square 1. x

[JanW in reply to Mandypandy1969]

I don't know anyone who has had a scan for lupus, usually biopsies Mandy Pandy. I know what you mean about long waits to see the rheumatologist saw mine two months ago, a wait of four months for my next, same for most and longer. Maybe as you are so anxious you should have a word with your doctor.

[Mandypandy1969 in reply to JanW]

I will when I get to see him. X