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This week I will have been taking Plaquenil for 1 year. I take 200 mg a day to help my "mild" lupus. The thing is I'm not sure if I actually feel any better on it then I did a year ago.

I'm still exhausted, yesterday we took the day off as it was our anniversary and went to the British Museum, but by the time I'd walked there from the station (about a mile) I could have laid on the floor in the middle of the place and had a sleep! I took my portable stool with me and had several sit downs (not much fun for my dear boyfriend!) but I couldn't even last 2 hours there I was so tired. As soon as I got home I went to bed! :mad:

It also doesn't help my joint pain. My knees still really hurt and are still inflammed. I've had a few steroid injections to kill the inflammation but these only seem to last a couple of weeks.

I'm seeing the rheumy in 3 weeks time so what should I be saying? Should I ask him to increase my dosage or should I ask to try something else?

We're getting married next year and I want to be able to stay awake on my wedding day! What if I try something new and it doesn't work and I'm struggling to stay awake?! I'm not asking to run marathons I just want to have enough energy to get through the day!
 

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Hi Becks,

I don't know that its the plaquenil that needs to be increased because i still get so very tired easily after being on it for a year myself. Though my dosage is 400mg, which is the recommended dosage for this illness.

I know plaq is helping me because i don't flare as often, and if i do flare it doesn't last very long,, just a couple of days compared to a couple of weeks.

My exhaustion is mainly due to a lack of rest when i sleep. I have restless legs and move all night long so my actual resting time is little to none.

Sunblock is so very important, once in the sun it makes me very tired and I could easily flare.

Make sure you look at all the other possible reasons you could be tired before you change your plaquenil dosage.

Your doctor should be able to help you determine what is causing your exhaustion.

Good Luck
Take Care
 

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Hello Becks,

200mg of plaquenil is usually a pretty low dose unless, of course, you are very small and light (the calculation is weight based).

It sounds very much as if something has to be done and that you need to be quite assertive with your rheumy and perhaps modifying treatment whather that means more plaquenil or adding another drug to your mix.

I do usually feel heaps better than I did a year ago (except my little bad patch right now) but would still find walking a mile to a museum out of the question. We organise things so that the only walking needing to be done is that "on site". I have also given up any pretence at nice shoes and wear trainers if I know I have to walk more as my feet hurt a lot from neuropathy.

As for your potential wedding day :) PLease don't worry about that. I was still quite ill last year when we got married but I got through the day very very well. Adrenalin does it for you!! The only thing is that it is best to plan total rest before and after. We got married at the end of the afternoon and then went on to the meal and evening. I only danced once with my hubby and no-one even noticed. I stayed in bed until 11am that morning, had a relaxed lunch and then started getting ready. Everyone had helped so that organisation was very smooth. All stress removed. For example, a friend, offered to have all four kids to stay over at theirs the night before, got them ready, dressed and then looked after them for the whole day so all we had to do was smile at them :rotfl:
The next two days were spent in a very very lazy fashion, late breakfasts, sleep and meals cooked by someone else!

Katharine
 

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I would ask to bump up the dosage AND inquire about adding other medications. 200mg is a very low dose, if you weigh over 135 pounds or so (or should weigh 135 pounds ideally) then the typical dose is 400mg a day.

Fatigue is a hard thing to treat though, probably the hardest thing to treat from my experience at least. But it is possible to get to having a little more energy with appropriate treatment for your lupus, and this may very well mean adding additional medication.
 

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Hello Becks

I agree about getting tested for anemia, thyroid and diabetes.

I suggest asking to be put on Mepacrine too which is more likely to help than simply increasing the Plaquenil. It adds to anti malarial pow and increases the effects of the Plaquenil while bringing its own special benefit of energising.
Maybe you have one of these very conservative doctors who don't appreciate the need to get the lupus under control as fast as possible so it has the least effect on quality of life, and is less likely to progress or flare

We have to bear in mind that with the usual long intervals between appointments it is best to have several options if the first doesn't work. So try for the Mepacrine and also discuss what to do if that isn't enough. If the Mepacrine isn't a possibility at all then you will be discussing a drug like Imuran (azathioprine) or methotrexate. If there is any choice between the two I personally would go for the Imuran.

With a bit of luck you'll be feeing much better by the time of your wedding. if you aren't so good at that point you could ask for short course of Pred to tide you over if need be. Naturally, you'll have to foresee that possibility and arrange well in advance

All the best
Clare
 

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Discussion Starter #6
Thanks for your responses.

Sadie, I have to confess I'm not the best at putting sunblock on in the winter, I must try harder and I don't sleep that well - have been having some aromatherapy to help this which works for the one day of the treatment!

Katherine - we're getting married quite early as we have a long drive from the Church to the reception venue - I guess I could have a little sleep in the car on the way there! ;) and I can't remember the last time I wore a pair of heels but I can't quite bring myself to throw all my shoes away!

Maia, I weigh pretty much 135 pounds - am just shy of 10 stone.

Clare, funnily enough on Monday morning before I went out I went for my blood test prior to my appointment and he's doing 10 tests including all of those things. I always go into my appointments with a list of questions and I do always feel he's quite abrupt and doesn't always have time or the inclination to answer my questions. I guess I just need to be more forceful!

Thanks again xx
 
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