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Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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I was prescribed Plaquenil yesterday. I was at a nurses appointment because I'd had to stop taking the Leflunomide (after the same thing happened with Mtx). I saw yet another nurse (the 4th different one) and she had a poor bedside manner firing questions at me and seeming to get frustrated when I couldn't think quickly. If she had suffered the lack of sleep I suffer due to pain and if she had to put up with the fatigue, brain fog and depression that I am going through then she might have been a bit more understanding. Anyway she tried to get me to go back on Mtx, despite the fact that the last consultant I saw said I should never take it again so I declined. I was then prescribed Plaquenil by a consultant who has never even met me. She went out of the room to talk to him. It is the 4th consultant I've had since getting really ill in April 2011. I really hate the lack of continuity. He would not have realised how seriously ill I was (and could become again). I am convinced that I am getting irreversible joint damage due to pain and joints giving way. When I read up about this drug later I found that it was for MILD RA and I don't think my case is mild. Then I read about eye damage and am really concerned as I have one eye which is a bit pink and teary with blurred eyesight and floaters. I told the nurse about this but she brushed it off. I am not feeling hopeful but will obviously try to be positive and give it a good shot. Maybe my dissatisfaction with the consultation in general is colouring my view of this treatment but I just don't feel optimistic. Gosh, I don't know if this post should be in 'RA', 'drugs' or the 'steam room'. If anyone can offer advice about this drug, good or bad then I would be grateful. Also do you think I am unreasonable to be miffed at being prescribed the drug in the manner that it happened.
On a positive note I am arranging an eye test today and starting counselling. Best wishes to everyone for pain free times. Naomi X
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 263
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Hi Niaomi
I am taking Plauquinel twice a day and MTX injection. It has been ok for me but i dont think it would do much without the MTX.
I do get dry eyes but i think its with the RA. Hope your feeling better soon.
Kathleen Mc.
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 3,006 Location: Timperley
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Hi Naomi
Sorry you are having so many problems. I really feel for you.
With regard to Hydroxychloroquine - try not to worry too much about the effects on your eyes. My optician told me that in his 15 years in the profession he has never come across one patient who suffered problems. I have been taking it for 2 years now, with no side effects and no eye problems, even though I have Sjorgren's disease.
Keep posting and let us know how it goes.
Take care
Love Jeanxxx
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Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
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hi Naomi,
sorry you get such a rough deal at your appointment's .. makes me truly thankful for the great care i receive.
i've been Hydroxycholorquine ( same as Plaquenil ) for over a year now, it was added to Methotrexate as this didn't work for me, unfortunately the two together still didn't work .. so Humira was added to the mix 6 months ago, i still take the other two as well.
i was worried about the eye problem they tell you about, was you give a sheet to check your eyes monthly .. i can't recall the name of it but someone will tell you on here, when i went for my yearly eye test my Optician told me it's very rare to encounter eye problems and if they do occur it's normally within the first couple of months.
as with all the drugs we are prescriped with RA there come's a heap of side affects we are told about, but doesn't mean they will happen, and i know i get scared starting any new drug, but as you take it more my confidence in it increases.
i do think it's a mild drug as well, compared to some but you have to give it a try as i'm sure it works well for some. it's definately a waiting game though and i can sympathise with what you're going through.
do let us know how you get on, and good luck with the councelling,
Suzanne x
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Rank: Advanced Member  Groups: Registered
Joined: 9/5/2010 Posts: 185 Location: Lowestoft, Suffolk
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Hi Naomi I've been taking Plaquenil for 2 or 3 years now and haven't had any problems with it. My eyes are fine. You should never be made to feel you aren't being listened to or aren't part of the decision making so I'm sad that is happening to you. I went for my repeat prescription of Plaquenil & Amiltryptilene and at the pharmacy was told I had more medication, called Alpha One to pick up. Knew nothing of this. Pharmacy queried it and apparently the Rheumatologist I had seen two weeks ago had prescribed it for me. It has actually been beneficial. I am nowhere near as poorly as you are so will cross my fingers that they are making the right decisions FOR you if not WITH you. Good Luck Angie X Be yourself - everyone else is taken. XX
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Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
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Naomi
I cannot help you with the Plaquenil as it is one of the few drugs I have not tried.
I don't think you are being unreasonable with the way you are being treated. As you say, continuity of care is so important. I think you need the time to sit down with someone to air all your concerns. I may have suggested this before, but if you can afford it (about £150), I would seriously consider going for a one off appointment privately with a Consultant Rheumatologist. They will give you all the time you need to talk about everything and put a plan into place which they can then advise your NHS rheumy team. This is the only way I could get decent treatment in the early days. If you cannot do this, then put your concerns in writing to your RA team. Is there another hospital you can go to?
RA is an overwhelming disease and is very hard to control if you are not going down the right path. The more you worry the worse your RA is going to be. You are the only one who knows how you feel and if things are not right. It is most probably the last thing you need right now, especially if you are starting your counselling, but if you are not happy, then please, please fight for your corner for better treatment.
Keep us posted.
Jackie
xx
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Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
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Hello Naomi
I have read your post and all the replies. Gosh I do not feel that the nurse had the right attitude towards
you and certainly did not listen to you. You must have come away very upset and teary.
I hope it works for you and that you begin to feel better soon
Take care.
Rose
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Rank: Newbie
Groups: Registered
Joined: 10/27/2010
Posts: 9
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Naomi1 wrote:I was prescribed Plaquenil yesterday. I was at a nurses appointment because I'd had to stop taking the Leflunomide (after the same thing happened with Mtx). I saw yet another nurse (the 4th different one) and she had a poor bedside manner firing questions at me and seeming to get frustrated when I couldn't think quickly. If she had suffered the lack of sleep I suffer due to pain and if she had to put up with the fatigue, brain fog and depression that I am going through then she might have been a bit more understanding. Anyway she tried to get me to go back on Mtx, despite the fact that the last consultant I saw said I should never take it again so I declined. I was then prescribed Plaquenil by a consultant who has never even met me. She went out of the room to talk to him. It is the 4th consultant I've had since getting really ill in April 2011. I really hate the lack of continuity. He would not have realised how seriously ill I was (and could become again). I am convinced that I am getting irreversible joint damage due to pain and joints giving way. When I read up about this drug later I found that it was for MILD RA and I don't think my case is mild. Then I read about eye damage and am really concerned as I have one eye which is a bit pink and teary with blurred eyesight and floaters. I told the nurse about this but she brushed it off. I am not feeling hopeful but will obviously try to be positive and give it a good shot. Maybe my dissatisfaction with the consultation in general is colouring my view of this treatment but I just don't feel optimistic. Gosh, I don't know if this post should be in 'RA', 'drugs' or the 'steam room'. If anyone can offer advice about this drug, good or bad then I would be grateful. Also do you think I am unreasonable to be miffed at being prescribed the drug in the manner that it happened.
On a positive note I am arranging an eye test today and starting counselling. Best wishes to everyone for pain free times. Naomi X Hello Naomi Before I was officially diagnosed with RA( as no RA factor found in blood at that time, my diagnosis was Seronegative Inflammatory Polyarthritis) and I was prescribed Plaquenil. I was never happy taking it as was always concerned about my eyes. The Consultant said my disease was mild but progressive and added that problems with Plaquenil were "As rare as Hen's teeth". My diagnosis later changed to RA as had a very positive anti CCP test and I was now taking MTX and half the original dose of Plaquenil. I had a very slight visual disturbance that only lasted a few minutes but did not want to use the drug any more. My consultant understood and I now only take 15mg MTX. I did not experience any other side effect on Plaquenil - ( perhaps a bit of indigestion.) Although I do not want to have this drug as I found that I was preoccupied with worrying about it, there is much research showing it to be safe providing regular eye tests are taken and the regular use of an AMSLER CHART, which I am surprised you havevn't been given. In spite of my Consultants reassurances regarding Plaquenil she instructed me to test my eyes once a month using the chart. She recommended using black charts with red lines as apparently these give a more accurate result. The main reason for regular eye tests, I think, is to look for any sign of macular de-generation., otherwise I think that any other problem with the drug would be temporary and eyes would revert to their previous condition with the cessation of the drug. I understand your frustration regarding lack of continuity with Consultants as I have seen a different 'locum' consultant for my last three appointments and not sleeping well is very debilitating. The only painkiller I take is Paracetamol, which helps a little. I hope you start to feel better and get more sleep.
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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 is an excellent drug and many people have had a lot of benefit from taking it. It is more commonly given in combination but the consultant must feel that this is adequate on its own for your circumstances. All drugs have side affects and the RA alone can cause significant problems. It's just something to be aware of but don't let it rule your life! I think, at the end of the day, we have to accept that RA is still very much misunderstood by many of the allied professions. This is where it becomes so important that the voice of NRAS is heard and its campaigning arm continue to raise awareness. Accepting ourselves that we have a progressive chronic disease and taking on board the responsibility for trying to understand our own disease pattern goes a long way to raising our own positivity. What pain relief are you on? It doesn't sound as though you are perhaps on an appropriate type. Lyn x
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Rank: Advanced Member Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
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Thanks to everyone for replying. Lyn, I am taking Tramadol for pain relief at night, without which I would have great difficulty sleeping. I take 30 mg co-codamol during the day and this takes the edge off the pain but does not get rid of it completely. I feel quite reassured about the risk of eye damage, especially since seeing the optician yesterday. I had a normal eye test plus a 3D scan of the eyeball. the whole test set me back £60 which is well worth it but I was disappointed that I couldn't get this on the NHS as it was necessary for the drug treatment. I have been taking the Plaquenil for 3 days now and no side effects at all so far. I am going to try to be positive, after all I have a consultant appointment late April and if there is no sign of improvement then I'm sure that I will be prescribed something else in addition to or instead of the Plaquenil.
Best wishes to all X
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