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Discussion Starter #1
Hi all,

I was recently dx'd with uctd and fibro and have been on plaquenil for 2 1/2 months. I know it takes 3-6 months (sometimes longer) for it to take effect, but what I want to know is how much better can I expect to feel?

The pain, while bad, can be relieved a little by NSAIDS, but it's really the fatigue that is debilitating. I'm off work right now and really most times lately I can barely get up.

I don't expect to be superwoman, but I long for the day when I can at least function to some degree. I guess we all feel like we've lost so much of ourselves, I just want to know how much I can expect to improve.

I don't post much, but I read your posts daily. :)
Thanks so much
Lady
 

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Hi Lady Redhead,

I have been on Plaquenil for about 3-1/2 years now (I started at 200 mg/twice a day, reduced to 200 mg/day for awhile after I got feeling better but started to flare so went back up to 200 mg/twice a day which I continue to take). I must say compared to how I was feeling/what I was able to do before the plaquenil, I am much better although not 100%.

I had gotten to the point that I had to reduce my hours to part-time to allow plenty of rests during the day, job modification(I did home health Physical Therapy at the time) etc....the joint and muscle pain/swelling was bad, but the fatigue was mind numbing. I got feeling better after 3-4 months and gradually over 6-8 months increased my hours to 3/4 time. Now I am working full time and manage OK. I don't get a lot of extra stuff done during the work week, but with being able to sleep a little extra on Saturday and Sunday and managing my time my weekends are fairly good and I am able to get the essentials done along with some fun/recreational activity.

For me the Plaquenil really made a big difference in my quality of life and ability to keep working. Not everyone responds the same, but don't lose heart yet, it can make a significant difference. Best of luck to you!

Nancy
 

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Hi there,

Unfortunately that is a question that no-one can really answer. For some people plaquenil will make "the" difference that means that they can go back to a pretty normal lifestyle. For others it won't be enough on its own.

sorry I can't give you a better answer, I know that it can be very frustrating.

Katharine
 

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It took me 9 months before I noticed any improvement, both times I started or restarted Plaquenil. The percentage of improvement I feel on it varies with the flares I go through; and when I get bad I will go on prednisone for a few weeks to a few months (or more).

Other people for whom Plaquenil is not enough will go on other medications such as methotrexate or Imuran - usually in addition to the Plaquenil. If fatigue is the worst part of it, then you can also inquire about adding quinacrine/mepacrine to the Plaquenil as this can really help fight fatigue in particular. In the US they seem fairly resistant to prescribing this medication for some reason.

Some here will take medications specifically for fatigue, but in my opinion there isn't enough evidence they work well enough to be worth the money and/or any possible side effects.
 

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My own understanding and experince tells me this.

Medications only sucess is in supressing the disease as much as possible.

Everyone's flares or reactions are individual and it is more than likely if Plaquenil gives you after a time some respite in symtoms there may be a ceiling on what benefits it may give you.

That benefit will fluctuate but it may be milder in symptoms of 'bad flaring times or intenser lupus days' so to speak.

It should be said that for those whose lupus is more serious or symptoms outweigh just being on Plaquenil then obviously that is a completely different scenario.

I myself was one of those who although felt Plaquenil was giving me some benefit ( after approximately 9 months onward) I knew that my quality of life was still difficult .

I am now on a drug called Mepacrine which is mixed in with Plaquenil which I found about via another Doctor ( not my own I hasten to add).

It really has been the best thing I have added on top of the Plaqenil.
I wont say Im symptom free but in the balance of how I was before I have to say Im managing a whole lot better.

To sum up....its a bit of a waiting game to see what benfits can be gained. It takes good experience from a good doctor to medicate you with the correct dosage, open minded monitoring, and thinking outside the box should you need something other than your current medication.

Nicky
 

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Discussion Starter #6
Thank you for your replies. I realise that responses to meds are different for everybody. I just wanted to hear your personal experiences and you provided them.
Thanks
Lady
 

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Hi,
I too am newly diagnosed with lupus and sjorgens and I am in the same boat. I can seem to control the aches with good old aspirin but it what's I call profound fatigue that is "killing me." I was a triathlete and now I use all my energy to make it to work. I have been on plaquenil for three months and just hoping I see some change soon. I don't have any anwers yet but I totally understand where you are coming from.....good luck and just keep thinking day by day.........
 
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