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Rank: Newbie
Groups: Registered
Joined: 12/3/2009
Posts: 8
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Hi
Nearly 4 years since I last saw a Consultant as mine retired, so my recent appt with my new one was a thorough reassessment and in depth discussion about every aspect of my condition. (about time too after years of long gaps between appts or superficial appts with Junior Drs)
Along the way, the Consultant said something which gave me the impression you can only stay on HCQ for 10 years. I have never heard this before and can't find any info about this. Has anyone else come across a time restriction?
Thanks
Liz
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 302
Location: Rainham Kent
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Hi,
Sorry I can't help but good to "see" you. I'm sure someone will have an answer
Anne
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,689 Location: Durham
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Sorry, I have no idea about the drug you mention. I`ve been on humira now for almost 7 years, and assume if it`s still working I will stay on it. Kathleen x
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hello,
it is one of the "milder" drugs for treating RA, i did take it along with Methotrexate but it didn't help .. i eventually went onto Humira and have now weaned off Hydroxy.
i'm surprised if there is a time limit, was never told that.
sorry can't help more.
Suzanne
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Rank: Newbie
Groups: Registered
Joined: 12/3/2009
Posts: 8
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Thank you
I tried to scan through the NICE guidelines (all 200+ pages) but gave up!
No doubt if there is a limit, it will all become clear in time!
Liz
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 185 Location: Lowestoft, Suffolk
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I've been on Hydroxy for 4 years, didn't know anything about a 10 year limit. May be a silly question, but have you looked at the leaflet that comes with the medication? I'll have a look tonight. Angie Be yourself - everyone else is taken. XX
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Rank: Newbie
Groups: Registered
Joined: 12/3/2009
Posts: 8
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I can't find any reference at all in the Quinoric leaflet, nor anything under Plaquenel online. There are references to eye problems being more likely with long term use, so maybe its just my Consultants personal view that 10 years is enough. I have been on it 8 and a half years, so no doubt if I heard correctly, that it will be discussed at my next appt.
Liz
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Rank: Advanced Member  Groups: Registered
Joined: 4/24/2013 Posts: 703 Location: Hexham
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We have often said on this site that you have ultimate control over what goes in your body. Normally th is in reference to our ability to refuse drugs that we don't care to take for whatever reason. I don't see why that should not work in reverse. If there are no protocols to say 10 years is the maximum, then why should you not be able to ask to continue it on the basis that it suits you, and finding an alternative that works could destabilise you and take a long time. Just a thought..... Paul Barrett
Hexham - Northumberland - Loads of spectacular walks - all I need now are the joints to go with them! :)
Enthesitis (2012)
Ulcerative Colitis (1990)
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Rank: Advanced Member  Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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just catching up folks,whats the verdict on hydroxy then,ive been on it for 4+yrs,i haven't read or been told anything,dorothy
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Rank: Advanced Member
Groups: Registered
Joined: 8/1/2010
Posts: 255
Location: hampshire
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Hi all I saw my optician today. She was really knowledgeable about RA and hydroxy and how it affects the eyes. When I commented she said it had formed part of her dissertation. I asked her if there was a limit how long we could take it. She said it had a cumulative effect on the eyes so yes, there was a limit and our eyes needed to be carefully monitored. If the drug does build up too much and we have to stop taking it then its level should gradually reduce. I have been on it since 2009 and my eyes are OK but she has made an appointment for me to have drops put in so she can take pictures of the inside of my eyes and then have a base line to keep a check on them. I was really impressed with her. Sue 
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 302
Location: Rainham Kent
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Sorry to hijack, How are you Dorothy, how did the wedding go?
Did I miss your posts?
Thanks Sue, very interesting, my good optician has retired so doing the rounds
to get one who understands RA!!
Anne
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Rank: Advanced Member Groups: Registered
Joined: 9/13/2010 Posts: 786 Location: east anglia
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sue, I go to boots optician as they do the eye thingy and pressure check now for free, I have in the past paid for these test as I have been on hydroxy a long time too,like you my optician has a good knowledge of meds and really gives my eyes a m.o.t,
anne hi, the wedding was really good and if you remember I had a piper as a surprise for them which went down well and a great day was had, we even had a fly past,nothing to do with me but it went over at the right time so we had a laugh about that,my daughter got engaged in October so here I go again,no wonder I went down,and now sons baby due in august,how are you doing?,i think we better move to the chin wag room,sorry folks,dorothy
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