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Thread: need help!!!

  1. #1
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    Default need help!!!

    Hi everyone,
    I just came back from the dr.s today. I am so frustrated, confused and worried. I was diagonsed with lupus in March. I been put on plaquanil. 200 mg. a day. Before I started the medication, I went to the eye dr.
    In April, I went back to the dr. treating my lupus, and she recommended that I should go on Plaquanil. I told her she already put me on it.????
    she then wrote out a prescription for steriods. My stomach could not tolerate the steriods. In fact, when I first started plaquanil I was getting sick. The dr. told me to stop it for a week and make sure it was the medicine. I stopped it and felt better. (stomach wise) I then tried the steriods and back to the same stomach sickness. I started taking plaquanil 1 pill a day for a week and worked myself up to the dosage the dr. wants me on. I have now been on it for a good 3 months.
    This is what frustrates me.....today at the dr.s.....the dr. said that I have only been on the plaquenil for a few weeks......the other is that she mentioned steriods again.....but THIS TIME ACTUALLY TOOK THE TIME TO LOOK at my chart.....I have very high bad chlorlestrol....and she said steriod use would not be good. I have been suffering from chronic pain in my back and neck for a good 8 years. (let's just say - getting thrown down stairs and beatings to my body- caught up with me)....so I know I have chronic pain....but between my joints in my elbows...wrists...hands...knees is this from lupus....I just get scared because it seems the dr. doesn't remember or realizes what and when she put me on medication. When the dr. asks how do you feel....I answered with ... I'm dealing with it.......I give up.....I am more confused than ever......and probably anyone reading this is too.....I am rambling...but I don't know what else to do. Is there any other kind of doctor's that can help treat lupus???? I have discoid lupus, SLE, and Sjrogren's syndrome......I don't feel good.....and I do have pains.......is this all in my head????? PLEASE HELP......anything will do at this point...
    Thank you and sorry for all the rambling......this probably doesn't make sense......

  2. #2
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    It definitely sounds like you need a new Rheumatologist. I think most doctors these days rush you in and rush you out, but you need to find one that is going to be attentive...I can't believe she wanted to put you on a drug that she had already put you on! That is rediculous. I am on Plaquenil...I have not had any stomach problems with it, but i hear that that is totally normal, most people do. And the joint pain is normal for Lupus too, but the Plaquenil will help. But you have to give the plaquenil 3-6 months....it has to build up in your system before you will notice any change in how you feel. For me it took about 3-4 months, so give it some time.

    I was diagnosed almost 2 years ago and i still feel frustrated and confused! so i know how you feel! Welcome to the club!

  3. #3
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    I would be looking for a new doctor! In order to help yourself, get copies of all your medical records, in addition to having them sent to the new doc. (find one first, before you do this; try the closest teaching hospital, if there is one in your area). You must request these in writing - the office should have a form. Before each visit, write down your questions. Keep your own list of meds and side effects. As far as the stomach problems, there are drugs you can take to protect your stomach; ask about them. This disease seems to have such far reaching effects, I feel for myself that I must keep track of everything, and I have two docs that I think are good. It is hard to be patient, and be a patient sometimes! But I believe the best you can do for yourself is find a board certified Rheumatologist that you trust. And this might take some searching on your part. Ask a doc you trust to help you; family doc or internist, even your GYN or Dermatologist, someone you have a good opinion of, for referrals. We DESERVE the best care available!!!

  4. #4
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    Very confused I agree I think you need a new doctor. I see that you are located in Pennsylvania. If you are anywhere near Pittsburgh or have the ability to drive there if it's not an inconvience there is a really good Lupus Center at Magee Women's Hospital. Below is their web address. You may want to look into it or even call and see if they can recommend anyone from your area. I know it's hard but keep your chin up :lol: ~Butterfly

    www.lupuscenter.org

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