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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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I have been on Plaquenil for 6 weeks now. It's my only dmard. I was put on it after reacting badly to other dmards. My symptoms are getting worse. I have never been so stiff in the mornings and I am in pain most of the time. When my joints give way I howl out loud (can't help it) and I just feel awful. I am fatigued so badly and can't believe my lack of energy and how little I seem able to do. I know it's very early days and 6 weeks is too soon to have any improvement. I have read so many different things about when the drug might work ranging from 6 weeks to a year! I want to hear it from the horse's mouth so to speak. If you have ever taken Plaquenil please tell me when it worked for you, if at all. I just need some encouragement because I feel like giving up. I've been ill for nearly a year and it's wearing me down. Best wishes to everyone from Naomi.
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Rank: Advanced Member
Groups: Registered
Joined: 12/4/2009 Posts: 2,127 Location: Thornton Cleveleys
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Hi Naomi Hydroxychloroquine can take up to 13 weeks to work but can sometimes work a lot sooner for some people. I took it many years ago, on its own, but can't now remember how long it took to work. To me the key here, given what you have said, is not so much the effect of HCQ on the long term control of the disease but your immediate need for relief from the symptoms of the disease, pain, stiffness and fatigue. Pain needs to be managed adequately by appropriate medication separate to the DMARD. I have been on pain relief for 24 years at varying doses adjusted according to the efficacy of other drugs. There has never been a time when I have not needed some pain meds. Unless you are in drug-induced remission you will need pain relief. Surely you are taking pain meds and/or anti-inflammatories? If these are not dealing with the pain a visit to your GP is needed, there is so much available. Fatigue requires rest. In my experience it is the only way to get on top of it. You are fatigued because your body in its current state of ill health is saying you are doing too much. The HCQ will not work effectively, in my experience, if you aren't giving your body optimum conditions in which it can do what it needs to do. As you have not tolerated other DMARDS I think you have to give this one a fair crack of the whip otherwise you risk another failure. You need time out from work, you need to rest when your body is tired and you need to be taking appropriate pain/anti-inflammatory medication. There is so much available these days that no-one should be in pain. The 'quick' fix is a steroid depo-medrone injection followed by 48 hours bed rest and an ongoing plan for pain management. An alternative to steroid by injection is oral steroids which will quickly bring things under control. Giving up is an option but where will that get you? Nowhere! At some point you will have to address things in a logical way to ensure the pain is minimal and the fatigue is not allowed to get hold. The HCQ will then have a much better chance of doing its job! Tough love, perhaps, but a harsh disease requires harsh measures. Been there, done it, and wear the joint damage. Don't let that happen to you. Lyn x
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Thank you for your reply Lyn. I will definitely give this drug a good chance to work. I know I must do this and I don't mind taking it because the side effects are minimal. I am just feeling frustrated and hopeless, probably due to the long term pain wearing me down over the last 11 months. Sometimes I just feel that I can't take any more. I am taking pain relief and anti-inflammatories. I take Naproxen 2 x daily and Co-codamol 30mg x 2 (day time) and Tramadol with paracetamol at night. These all help a bit. I have not really got the hang of resting enough. I'm still working on this. I don't think I realised until now how vital this is. I still think in the back of my mind that I can overdo things and then catch up on sleep and rest later.....but I can't, and I do need to take this more seriously. I'm finding it difficult to adjust because I used to be such a busy person, never putting off 'till tomorrow what could be done today. I know that 6 weeks is far too early and I am being impatient. I'll try to pull myself together, dig out the relaxation tape that the counsellor gave me, rest more and be more positive. Best wishes to everyone.
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Naomi,
i was put on Hydroxy about 6 months after i started on Methotrexate as that wasn't working for me up to the 20mg dose. i stayed on them both ( reducing Methotrexate down to 10mg ) for other reasons, for another 6 months. unfortunately the combination didn't work for me.
so i was then put forward for Humira an Anti -TNF which turned out into a long drawn out process re the funding, started on that in August and take it along with the above two.
so really i think you have to give it a good 6 months .. well it was that in my case.
i am fortunately now under control, but i do still get fatigued so i guess it goes along with the condition.
Lyn has give you great advice about pain meds, so perhaps a different combination will help you through this period,
i don't take pain killers so can't advise there.
hope you begin to feel better soon, although i know that it's a waiting game with each new drug.
Suzanne
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Rank: Advanced Member  Groups: Registered
Joined: 1/21/2012 Posts: 388 Location: Powys
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Hi Naomi, I have been on plaquinil 20mg. for some 18 mnths now, together with mtx 22.5. I'm really not sure how much it is or isn't working. I have also tried Enbrel which worked for a while then rtx which improved things a little. When we take all these combinations its hard to know what is doing good. I am not good now but am certainly better than I was even 18 mnths ago when I was admitted to hospital twice in three months to have steroid infusions and hydrotherapy etc. My ra took off two and a half years ago and became severe, and I'm still hoping for it to be better. I have asked my rheumatologist a couple of times about coming off plaquinil, just to try an alternative dmard, but he says that I will not realise how much it helps until I stop taking it, so I continue. As this is not having bad side effects for you and it is one of the safer drugs I would continue. Even if it does not seem to work, as it didn't for me until I had it with a tnf. In combination it may work later for you. The hardest thing with drugs for ra is that they take so long to work but we have to try to keep hopeful and try to be possitive. I now believe that getting fed up and feeling down actually makes my ra worse, so above all else I try my very best to be possitive about it all. It is all easier said than done but do keep onto your rheumy team for temporary relief from steroids in what ever form, to get some immediate relief. I don't suppose I've been much help, but good luck..Zena x.
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Thank you Suzanne and Zena for your information and encouragement. It has been a great help. I am trying to be more patient about it all and to prevent myself getting stressed. I have been making sure I rest more, going for a nap in the afternoons every day and I think this is helping my physical symptoms. I know that when I get too tired my joints hurt even more. It's frustrating needing so much rest but I must accept this in order to fight against the RA (it's not good to see it as giving in). I send my best wishes to every one x
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Rank: Advanced Member  Groups: Registered
Joined: 11/20/2010 Posts: 244 Location: Cornwall
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Naomi, Well done on your afternoon naps, they do help enormously and I don't do them often enough! Its a terrible drag this looking after yourself isn't it?! Take care and hope you get some relief soon, I can fully recommend a depo, bees knees but not a long term solution of course Sara x
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Rank: Advanced Member
Groups: Registered
Joined: 3/14/2012 Posts: 46
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Hi Naomi You were quick to send me encouragement and kind words so I just wanted to say chin up and I hope you will be feeling better very soon. If you remember I am also 'newly diagnosed' so can relate to what you are going through. Take care and gentle hugs - Kim x
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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Thanks Kim, I really appreciate that.
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Rank: Advanced Member
Groups: Registered
Joined: 12/3/2009 Posts: 62
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Hi Naomi
I'm on hydroxy and have been for nearly 5 years. I was also initially on 5mg steroids but have now got down to 3.5 mg and have started taking just 3mg once a week which I will increase (hopefully) to daily. It took 10 weeks for it to start working and I noticed an improvement in one wrist first of all. At one stage I thought it was disagreeing with me so my rheumy told me to stop taking it and see how I go. Three days later I couldn't even lift a spoon to my mouth so I went back on it again but I reduced the dose to 1.5 tabs daily instead of 2 and have been fine since. I found the introduction of amitriptyline made an amazing difference to me as well.
I hope you start to feel better very soon - B
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Rank: Advanced Member
Groups: Registered
Joined: 5/22/2010 Posts: 51
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i myself have been on enbrel injections now for one month along with 20mg mtx 50mg sulphazine 20 mg steroids but ohhh i feel so tired so i have some idea how you are feeling.So good luck for your future Valerie-R
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Rank: Advanced Member
Groups: Registered
Joined: 5/22/2010 Posts: 51
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i myself have been on enbrel injections now for one month along with 20mg mtx 50mg sulphazine 20 mg steroids but ohhh i feel so tired so i have some idea how you are feeling.So good luck for your future Valerie-R
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