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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 89
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Hi,
i've been on hcq now for nearly three years, at first i felt very poorly taking them with upset tummy and head aches but after a while i think my body got use to them. I did have my eyes checked every si months a was worried about it but i've just realised i haven't had them done now for well over a year, will have to make appointment! I take both of the tablets togther although it says take one twice a day, to be honest with all the other meds there's not enough hours in the day to spread them out!
Brenda, sounds a good idea to go back up to two, maybe you could ask for some steroid tablets to help with the shoulder pain.
Alison, goodluck with Humira, many peeps on here are on this drug and have benefit from it.
Julie, i do get blurred vision but not as much as i did when first started the drug unless i've just become use to it now!
Helly, glad youv'e got more energy, that's a positive sign.
EmilyXXX.
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Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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Hi All, I am now half way through my 3rd pack of hydroxyc and I just found out I have been taking them wrong. Didnt look on the box. So does anyone know if this causes a problem taking 2 tablets at one go. I agree with Emily I just find it hard to split the doseage and usually take all my tablets at night, so thats 5mg predislone and 400mg of hydroxyc. Any way of finding this out without having to go back to my consultant to find out? I will probably ask my GP but I think she might refer me back to the consultant. 
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Rank: Advanced Member  Groups: Registered
Joined: 12/8/2009 Posts: 230 Location: Leicester
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My understanding is that the medication releases over a 12hr period, hence why you take one in morning and one in evening. Taking them both at the same time means you may find yourself struggling later in the day. I schedule my tablets with breakfast and then take the other hydroxy just before bed which then means I am not so stiff in the mornings. Helly x Celebrating 10yrs of National Rheumatoid Arthritis Society Doing a Tandem Skydive - May 2011 - All Sponsorship Welcome - www.justgiving.com/helencopeland Read my blog - Helly Copeland
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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Thanks Helly, for the info, i will try and split them now and see how i get on.
Mari
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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My dose of 400mgs is split into two doses - as instructed by the GP and the pharmacist.
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009
Posts: 89
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Thanks for this, i didn't realise the meds are released over 12 hours, will have a go at spliting them into the two doses!
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Rank: Advanced Member  Groups: Registered
Joined: 12/14/2009 Posts: 61 Location: Lancashire
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Hi, As I said earlier I was on Hydro, but asked to come off because of bad heads sore eyes tinitus psoriasis, none of which I had before starting the Hydro, I have been off now for 8 weeks and the headaches and sore eyes have gone, but the pain and swelling has returned. Luckily I have managed to get an appointment with my rheumy nurse tomorrow, We will see what comes of that, fingers crossed.
John
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Rank: Advanced Member Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hope it all goes well today, John
Jeanxx
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Rank: Advanced Member Groups: Registered
Joined: 12/14/2009 Posts: 61 Location: Lancashire
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Hi Jean, Well I'm not sure wether it's good or bad news, the consultant will not give me another drug as he believes I have fibromyalgia. Went for another spine x ray and will have to wait to see what happens. I am now going to start a new thread and hope that others can give me some information about my new diagnosis.
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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My taking of the hydroxyc has become sporadic trying to split it into 2 doseage - I can never remember to take the morning tablet, I did for a few days and had pretty bad stomach cramps. I am not sure if its related. I had an eye appointment today cos i have a chronic eye condition and the optomoiogist said that if any issue with my vision I have to go straight to my gp and get an emergency appointment. He said that the side effect can cause the retina i think to be scarred adn once thats scarred then theres no going back but stopping the drug immediately will stop the build up, I suppose limits further damage. I am so unhappy with taking hydroxyc although I am doing realitively well on it and I think it might be kicking in but who knows as I generally have periods of respite particularly if I slow down and dont do much involving my wrists. I have an appointment next month as to review the drug with my new hospital and their initial reaction is to leave me on hydroxyc and steriods as my RA is mild. I want to know is if you take hydroxyc indefinitely do you eventually sucumb to this side effect as its to do with the build up of the drug in the system. This is supposed to be limited by the doseage - so 400mg seems to be the average dose for mild RA. So what doesage can bring on the side effect? And what is the length of time one is left on hydroyc can you be left on it for say 20 years? I know the risk of this side effect is suppose to be rare but I just need more reassurance. So would be interested in your thoughts on all of this. Also how is everyone getting on with hydroxyc? I am halfway through my 3rd box now. 
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 103
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Hi,I've now been on Hydroxy for about a year and so far so good,in fact the rheumy consultant dropped me from two a day to just one as my last blood tests were good.  However,arm/shoulder pain still bad and the steroid injection didn't work so will be seeing my GP this week to see if he'll put me back on the steroid tablets for a while as they worked well for me last year.The arm/shoulder pain keeps me awake every night and I'm desperate for a good nights sleep.Has anyone else had their doseage of Hydroxy lowered?
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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Hi Brenda
I have/had arm shoulder pain but it was a result of an acident and a us showed a tear in the tendon as well as inflammation. I just thought I would say this incase to check if the pain is RA. In fact these tears can just happen from throwing things or an impact. Glad to hear you are on such a low dose of hydroxyc. I hope you manage to stay off the steriods. Also there is a drug you can get to help night sleep think it begins with a V - could be an option
All the best
Mari
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Rank: Advanced Member
Groups: Registered
Joined: 12/6/2009
Posts: 81
Location: norfolk
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Hi Brenda (and you others of course)
I too had a steroid jab in the shoulder yesterday so waiting to see what happens. My rotator cuff is what is causing the problem and I do have some fluid in the joint too. Cor isnt it difficult getting dressed and undressed when your arm wont go any higher than waist height. I gave in and bought myself a dressing stick. Its only a wooden stick with a weird shaped hook on the end but it does help enormously. Would love just one nights unbroken sleep.
Since Christmas my bloods have shown increased inflamation (and dont I know it!!!), I started hydrox (plaquenil) at the end of December and initially I did get the stomach cramps...still waiting for it to kick in. I do find you need to take the hydrox with a full glass of water and that makes a bit difference. I try to get to the local swimming pool and hot tub (gorgeous at 38 degrees) but am finding that I have to wear splints in the pool for running through a simple exercise routine. If I dont my hands and wrists start swelling.
Trying to catch up on all your posts.
Love to you all
Sue
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Rank: Member  Groups: Registered
Joined: 12/16/2009 Posts: 21
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Hi fellow Hydroxy takers! I've just started taking 400mg (one week ago) with Met Inject 10mg, my consultant said to take two tablets in the evening - I've been ok on them I know it's very early days, quite tired by the afternoon but that's just the RA probably or the prednisolene wearing off/ not working as well, but the chemist said to take one in the morning & one in the evening - might try this if this is what others are doing? I've had eye surgery so will defino go to the opticians regularly.
Woodyx
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Rank: Advanced Member
Groups: Registered
Joined: 12/5/2009
Posts: 103
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Hi again,My consultant reduced my Hydroxy to one a day because my last blood tests were good. However,due to pain in the knees,hands,wrists and shoulders not improving,he's put me back up to two a day.Also had another steroid injection,this time in the buttock but like the one I had done in the shoulder,it hasn't worked.I did have three x rays done on the shoulder and they were OK but don't know if x rays would show up a shoulder tear.I'm now waiting to hear from the rheumy nurse to see if another Dmard will be added to the Hydroxy.I had to let her know if the jab didn't work but she's been on hols for a week, back on duty tomorrow.Brenda. 
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,110 Location: London
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Hi, just thought I'd add my comments about the hydroxy. I staarted on 200mg per day on 26th Feb. So still new, seems ok so far,also taking 20mg mtx. Had the eye test and that was all ok. The pred still helping a bit on 15mg. Not as much pain as previously, but feet and back giving me problems. Hope everyone is doing ok. BARBARA
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Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 331 Location: South London
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Brenda I think for a tear you need an ultrasound. re the steriod shot work for some and not for others I believe. Re hydroxy I was hopeless in taking the Hydroxy twice in one day. Asked the doc and she told me I could take it in one go. (though if you are thinking of this best check with doc/nurse first) Been on hydroxyc since November and so far so good. Eye sideeffect is suppose to be quite rare. So happy enough (see post under RA discussions) All the best to the Hydroxy gang
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,582 Location: Oxfordshire
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Yes, eyesight damage is very very rare with Hydro...
I was never even told to have my eyes tested! LOL
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 1,740
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Hi been on Hydroxy now since november 2009 all imediate problems have now subsided,did not have any eye porblems. due for review this week. wondering if mine will be increased not sure il let you know. lv melly cuddly cats make my world seem so much more fun
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Rank: Advanced Member Groups: Registered
Joined: 12/14/2009 Posts: 61 Location: Lancashire
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Hi all, Just a side issue here. On taking the plaquenil I noticed while on holiday that I was burning while using my normal sun factor of 15. The next time I saw my GP I asked him if taking the drug could be to blame. He told me it was quite possible and recommended that I use at least a 25, Which I did and it worked, I got a nice colour and no burn.
John.
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