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Thread: Need Some Advice Please!

  1. #21
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    You know even if your first doctor was right i'd say get that second opinion. Obviously your not happy with that doctor, i'm going through the same thing with mine. I feel it's harder on you when you feel your doctor is not listening to you. When I get the money I will be going to a different doctor.
    And you know what now that I think about it my doctor gets all pissy if I ask to see my lab results, all she will tell me is if it's good or bad. OOOooooohhh this is just making me madder now that im thinking about it so I COMPLETELY understand your frustration.
    Good luck I hope this new place helps you.

  2. #22
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    Hey everyone How can I thank you all for your kind replies and support? You will never know how much it means to me. I am hanging in there waiting for January I am on the cancellation list but with the holidays I think that this doctor may be out quite a bit. There are 2 doctors that are specialist at the University I feel like I need to wait on this lady though. She specializes in SLE . And Mica I know exactly how you feel the doctor I had never wanted me to see my blood results and never wanted to discuss anything beyond Plaquenil. If it wasn't for my neurologist I probably wouldn't be walking around right now. My blood sugar is till kind of out of whack but pain also causes that to happen. Hope everyone is doing well today. Thanks again.

  3. #23
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    As for the tremors-it could be many many things, my rheumy actually told me (mine were noticeable to others) that plaque nil actually helps suppress them (not sure how accurate that is but I thought I'd share)

    Agree on the waiting list/cancellation list. Another option that's worked for me in the past is getting into another office at a university or hospital-sometimes having affiliation doctors that refer you can pull more strings.

    Best of luck, hope you get answers sooner than later!

  4. #24
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    Hey there everyone. Just thought I would check in. Made it through the Holidays. This was one year I can say it was tough. I am not improving at all . My appointment is Jan 21. So please whisper a prayer for me. I will keep you all updated. Hope everyone is doing ok.

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    steve.b (12-31-2012)

  6. #25
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    Keeping my fingers crossed that all goes well at the doctor. Let us know how things go and get to feeling better
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  7. #26
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    Hello everyone. Well I made it to the new doctor. I had to go through all new bloodwork and x-rays. She confirmed the lupus and RA. For the next 12 weeks she is only going to do plaquenil. But she did increase my antitripline 25 mg at bedtime. She said we would work on new meds a little at a time. She really thinks that the RA is worse than the lupus right now she told me they both were very active? So I will follow directions and hope for the best. I do wish she would have started me on some other meds but hopefully time will tell. Hope everyone is doing well. Thank you all so much for your concern.

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  9. #27
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    oh Doublecamp you've been through the ringer these past few months. Hopefully you'll get all your conditions under control soon. {{hugs}}
    Diagnosed in 2010 with SLE, recurring pericarditis, pericardial and pleural effusions. Fibromyalgia, Avascular Necrosis on both knees, IBS, Gastroparesis, migraines, DVT's, Pulmoray Emboli. Arthritis, pinched nerves and bulging disk all on the neck. Hyperthyroid issues. Neuropthy, anemia and insomnia "taking it one day at a time, what more can I do"

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    doublecamp52 (02-09-2013)

  11. #28
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    the plaquenil will help both the lupus and the RA. There's a thread on here somewhere about the dosing being based upon a person's height, but I can't find it... The main side-effect for me was initial stomach upset, but that stabilized after a few weeks. I will still get indigestion at times from it, but it's probably more from what I eat when I take it. I take mine with meals. I also developed some strange "dreams" that were very vivid after a few weeks on it, but I've elminated those by taking my 2nd dose with lunch instead of supper. The *big* thing to remember is that it is a slow acting med, in that it builds up in your body. The longer you take it, the better it works. A person should get a "baseline" eye exam from an opthamologist for any potential future eye issues. The incidence of issues are few, and it takes years they say for them to show up. Be sure and communicate with the doctors' offices if you do happen to have issues. I started feeling relief within 3 weeks (wishful thinking??), but it gets better the longer you take it. I'm still having to "supplement" with 10 prednisone, so we're going to try other meds, in addition to the plaquenil, and try to eliminate the prenisone, which I've been on for over 3 years now...

    Best of luck with it doublecamp52. Here's hoping for some relief. The RA can do some serious damage to your joints in its early stages, and is also known for attacking the heart and other "soft" tissue in your body, so it is a good idea to get it under control asap.
    "There but for the grace of God, go I."
    "... His mercy endureth for ever."

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  13. #29
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    Thanks everyone again. I have already been on plaquenil for 2 years. The plaquenil will not work and the doctor knows that. She called me and said it is insurance protocol. My health insurance is not wanting to pay for biologics until they have new bloodwork at 12 weeks of the max dose of plaquenil. So the doctor said we have to play there game. The RA is showing severe damage to my left foot and bot hands. I know that I am here only by the Grace of God. I will keep everyone posted. Thanks for all your support.

  14. #30
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    You've got insurance like mine! I'm having to do the same dance right now. At least the plaq helps me somewhat though...

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