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Timbo

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45 year old male diagnosed with sle 2 months ago. I've been in severe pain for 18 months , joints muscles ect. Constant sore throats, muscle twitching, fevers , mouth ulcers, light sensitivity, fatigue & depression & so on & so on.
Taking plaquenil 2x daily. Was wondering if my symptoms will get better with plaquenol or is this the new normal for me now?
Robinj

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 #2 
Welcome
Plaquenil takes 4-6 months to build in your system. Be sure you have a baseline eye exam. It takes time, but most see improvement.

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Timbo

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Ok , thanks. Was thinking I may have had some improvement by now but that gives me hope👍
Robinj

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No problem. Hang in there! :)
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lupuscommunity

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 #5 
Welcome, this board has some very helpful people.  We hope you will continue to participate as we don't have very many men on the boards.  Always good to get a male perspective.  

Also, please be sure to contact our health educator if you have any questions.  Our nurse health educators are a great resource and have a network of medical professionals who are experts in lupus care to call upon for information.  They can't provide directive advice, but they can answer your questions and provide referrals to resources that may be helpful to you.  

Stay in touch and be sure to keep in close contact with your doctor during this early period.  It's important to get lupus under control to prevent more long term health problems.  But as Robin noted, it can take a few months until you begin to experience the benefits of plaquenil.   

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Timbo

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 #6 
Will do , thanks
pianist

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 #7 
Be patient. Your "new normal" could change quite often until your meds get adjusted and you learn what your limits are now that you have lupus. One of the biggest and best lessons I've learned is to pace myself. I only plan so much for each day and allow time for rest in-between tasks. Take care. I wish you the best! 
Timbo

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 #8 
Thanks for the support , it took 2 years to get a diagnosis. My first doctor told me i had depression & that's why I was fatigued & had joint pain. Sent me to a psychiatrist & told me there wasn't anything wrong with me . I've been told I was lazy & to get over it. I don't think other people understand what we go through sometimes. When I have a bad flare & can't move , I feel like I'm letting my family down .
I hate this disease, it's taken everything from me
pianist

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Sorry to hear how bad it has been for you. Lupus has taken many things from me, and I've been diagnosed for just over two years. I, on the other hand, already had a psychiatrist because I was diagnosed with bipolar disorder at 17. I've had many dreadful episodes of depression. When doctors saw the meds I was on for the psych condition, they (some) automatically dismissed my symptoms. I've been told it was "stress" so many times, and I've had disagreements with my rheumatologist because I've thought he was attributing too many of my symptoms to anxiety instead of treating them. I finally told him if he thought I had that many problems with anxiety he should call my psychiatrist. He let up after that. 
Timbo

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 #10 
Wow, that's horrible for you. The funny thing is , when I was diagnosed I was so happy that I had an answer . Now it's hit home that this is it, no cure , pain , fevers , rashes & the rest forever.
Seeing everyone's posts makes me feel like I'm not alone in this.
Thanks
Cakelady

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 #11 
Hey Tim welcome.

You will need to find your new norm but if it hasn't been said then I will say it STAY OUT OF THE SUN. The sun is your enemy. But that doesn't not have to stop you from doing the things you love you just have to do stuff differently and plan. We still go on vacations we just do a lot of planning and have back up plans in case I can't leave the room for a day or so

Once again welcome. We do have a couple of guys here hopefully they will stop by and say hi

Take care

Cake

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Lasseivegen

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 #12 
Reding about others with Lupus having mental problems I have had for a major part of my life been depressed and have had a lott of anxiety. For many years I got anxious for jus anny obstacle. It's been manny years suffering, as I am 69 years.

The amazing thing is that I doday are more or less free from much of the depression, and when I get anxious it doesn't take me long to get back to a calmer state.

I rely doesn't know the reason for, as I have made som big changes in my lif. And still I feel as my mental state is doing progresse forward and the anxiety is not coming to me more and more seldom.

After I remember the oald diagnosis of Lupus that I got in 1986, and reading about the Dx, I can think thath my mental illnes have had some connections to Lupus.
I have Glaukom and have had surgery in both eies. The strange thing is that I don't have problems with the sun. I am frekvently out trailing in the forestall, and kyacing. And no big problems from the sun. Think the only sun related is an eczema in my ears I have had for many years, that just vanished after I treated them with Hydro cortisone. After realising about Lupus I reminded me that the eczema came as relapses.

I look forward to read more and more in the forum.



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darla627

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 #13 
I also have depression problems Timbo and they became worse as my lupus or at times my lupus was worse I was wondering how are you feeling on the plaque when L is it starting to work butter or starting to feel it more
Timbo

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 #14 
The fatigue seems to be getting better, which is great. Headaches muscle & joint pain still there, also sun sensitivity is horrible. My hands are scarred badly by my last malar rash. Hopefully things keep improving, at least I don't want to sleep all day now.
Robinj

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 #15 
Glad to hear the fatigue is better Timbo. How long have you been on the Plaquenil now?
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When the first baby laughed for the first time, its laugh broke into a thousand pieces, and they all went skipping about, and that was the beginning of fairies. 
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