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Thread: New to this board and to lupus

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    Default New to this board and to lupus

    Hi,
    I'm Tori, I'm 23 yrs old and have recently been diagnosed with lupus in the last two weeks. I'm dealing with it as best i can, I have started on hydroxichloriquine from my doctor. I haven't had any major reaction so far, just nausea and some dizziness. I go back in for another app on the 7th of April to see how everything is going. It wasn't really a shock when he told me he thought it was most likely lupus. I had been expecting that before I had even gone in. It started last year and has just continued since, I was referred to my rheumtologist after my annual blood panel came back abnormal and needed more testing. I have a positive ANA with a speckled pattern and ANA titer of 1:160 and a high sed rate as well. Also with fatigue, joint pain, flushed cheeks, joint swelling and chest pain, which lead to the diagnosis. I have a whole bunch of question for my next app and would gladly take any suggestion for those who have been there on what I should ask and expect. Most of my family is supportive by some think it could be something else which isn't very helpful, my fiancÚ is staying strong and dealing with it as best he can, not something he hoped for me but it is what it is. Anyways, that's what is going on with me and I just wanted to talk with papilla who understood and could offer advice on their experience since I am new at this disease.

    Thanks all for reading.

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    Hi tori welcome to whl family my suggestion would be to write down every question you want to ask and every symptom you have been experiencing and your medication and there side affects and what to expect often times we have these questions but when we get into the doctors we forget keep a diary it really helps. Saysusie or rob or tgal can help with any questions about the site or your blood results. Hugs kim l sydney australia

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    Thanks for the suggestions Kim!
    My initial app with the rheumotologist I wasn't expecting a diagnosis so I wasn't prepared with all the questions I needed to ask for lupus. I did have a list of symptoms, general questions, meds I was and family history in a notebook I brought with me to that app but then he said he thought it was lupus and was starting me on hydroxichloriquine and then be took more blood and told me to make another app in a month so I didn't have a chance to form other questions pertaining to lupus itself. I have alot of other things to ask once I go back in now that I have something to go on. I've been in the dark with all of this for awhile since I was referred, my GP didn't give me alot of info when they referred me so I had to read between the lines and wait almost 2 months to get in to see the other doctor. I think the not knowing and the waiting has been worse then anything and now I'm just glad to have some sort of answer for everything that has been going on.

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    Hi Tori,
    Welcome to the WHL and it's lovely to have you with us.
    I was started on the same drug as yourself 5wks back plaquenil is the other name mate and easier to remember.lol So far i'm like you nausea and feeling sick but i've had the stomach pain come now besides some people have diarrhea, so i have to see what happens.
    It's nice how you fiance who thinks so much of you to stand by you.
    All i can say and suggest for when you see your GP is right question's down that come to you refering the illness and get fully prepared, i have a great GP but a rheumo specialist who loves keeping you in the dark, you must push at them mate and be persistant, it's your body at the end of the day.
    Take a good look at the threads and write down what you think should be asked and i wish you all the best Terri xxx
    Last edited by Peridot20_Gem; 03-11-2011 at 08:13 AM.

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    Hi Tori and welcome to WHL! I am so glad that you found us and decided to join! The drug that your doc. put you on is the standard first step. It will, however, take 4 to 6 months for the effects to really be felt. It comes on so slow that you don't really think it is working until one day you remember that the rash you have had went away and hasn't come back or something like that. If it bothers your stomach then take it with food. It seems to help many.

    Please make yourself at home here. I look forward to getting to know you and once again, welcome to the WHL Family!
    Mari

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

    ~Winston Churchill~







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    Thank you guys so much. It's great to be able to talk with people who understand an can help and offer advice on what's going on. I'm hoping my next app with my rheumatologist will be more informative since I have a better idea of what's going on and can asked him what I need to. I have been taking it with food and it does help but in addition to those meds I'm also on BC everyday and then vit D 50,000 units once a week and they all happen to make me feel sick so I think it's just the combo of it all. I've found that snacking on fruits and crackers and such helps on that part and I can't let myself get too hungry otherwise the effects are ten fold. I'm dealing though. I just hope that these meds work out for the best since I've read they're the best ones to start out with and I think I'm on a fairly small dose of 400mg a day? At least I've read they can put you on 800mg a day or something. My doc said it he should be able to decrease the dosage to 200mg a day after being on them for awhile. I don't know I'm so new to having this and I'm just trying to learn all I can to make it easier on myself and my family.

    Thank you guys again for the support!

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    hi Toradoradi,
    it is steve here, from australia.
    i have been on plaquenil for over 12 months. stick it out.

    when i was first diagnosed, 30 years down the track. i kept a small diary. i wrote all sorts of things. most of them didnt help.

    what did help was a pain diary.

    where i recorded what was happening to my body and when. how sore i was how happy or low i was. and also all of my doctor related questions. my rheumtologist actualy thanked me for this diary, as it made it easy for him to understand what i was going through.

    my rheumtologist told my wife, on another visit, how good it was to read my diary. please consider writing one.

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    Hi Tori,
    How you feeling today with the plaquenil and your nausea plus dizzieness, if your like me besides nausea i can't stop feeling sick but we all experience medication in different ways.

    Terri xxx

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    Hello Tori,

    I just wanted to say hello, and welcome to WHL. Please make yourself at home!

    Rob

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    Thanks everyone for the well wishes and welcomes. Today is alright. I am a bit sore in my legs today. They dont seem to like me for whatever reason but it's manageable. My chest pain I was having went away for awhile but decided to revisit me last night... I'm not sure if I ate something that caused this for today or if the emotional stress got to me since I ended up having a crying fest for a little while last night. Lol I'm a bit of an emotional person but this has taken the cake for me. Its a bit weird for me to talk about how I feel and am doing since I'm not a very open person in real life. I kind of just take everything in stride and I'm pretty easy going and tend to act as though everything is fine even when I'm having a bad day. It's refreshing go be able to get everything out about how I feel and what's going on and how it's effecting me to people who are in the same boat as me. This year is turning into being a crazy one. I've gotten engaged, been diagnosed, getting ready to move and planning a wedding all in less then four months. It's alot to take in sometimes. But at least there is the happiness of finally being engaged to the love of my life of the last four years to balance out all the other stuff that isn't so happy. At least there is that. Things could be worse... They could be better but could be worse and I think that's whats keeping me strong and not taking this as hard as I could have. Well sorry all for the long posts. I tend to rant when I get typing. I hope everyone is having a positive day

    Also, my heart goes out to those with family and friends who may have been in japan yesterday. I hope everything turns out alright and the damage that was caused can be fixed quickly.

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