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Thread: Hello, new here and undiagnosed

  1. #11
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    So glad you are making progress!!!! It can be a looooong road, and often diagnosis is not certain anyway. If you have anxiety issues as well, then it's way too easy for doctors to attribute everything to that instead of treating disease. Because, as you know, it's IMPOSSIBLE for anybody with anxiety to have any PHYSICAL problems... (can you see my eyes rolling?).

    I have two close family members with OCD - and I gotta say, you sound like you deal with it pretty dang well. It's a tough road, I know. This can't make it any easier - this stuff makes ANYBODY anxious, so give yourself a break. Strength, sister! : - )

    I'd strongly urge you to search this forum for the keywords "Plaquenil" and "Methotrexate" - you will find tons of good advice. Both medications have been absolutely LIFE-SAVING for me, but they DO take time to get adjusted to (sometimes a couple of months before side effects go away), and the plaquenil doesn't really take full effect for about 6 months or so. Be patient! Taking daily folic acid can help A LOT with methotrexate side effects, so if you're not doing that, talk to your doc about it. I take my Mtx twice a week instead of once (10mg on Monday nights and 10mg Thursdays) - that works better for me than one dose. And if you can't tolerate the oral form, there's an easy injection that people say is TRULY no big deal to do at home. At this point, my only lasting side effect from either med is that my hair is thinner - but I am willing to put up with that, because I feel about 90+% "normal" now, whereas before treatment I felt about 20-30% of "normal" most of the time. It was MISERABLE.

    Anyway - there's lots of good info on here, and we're always here to listen.

    Best of luck to you on this journey, and I hope you get relief very soon!!!!!

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    Quote Originally Posted by janiew View Post
    ........Glad it's being addressed and guess I need to find an RA forum. Thanks, ladies, you've been really nice!!!
    remember that this forum is open to people with lupus and friends of people with lupus ....... so you are more than welcome here. btw .... glad you are having progress with sorting things out.
    When you're stressed, You eat Ice cream, Cake, Chocolate & Sweets. Why? Because stressed spelled backwards is DESSERTS.

  3. #13
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    I have some warnings, make sure you have your liver checked regularly on methotrexate, because it can and will destroy your liver. I'm living proof.

  4. #14
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    The above is a true statement about having your liver checked while on MTX. It it is true on most of the meds we take. Many of them can damage our liver so please make sure you are getting your bloodwork done, liver check included, on a regular basis. It usually isn't a problem but if it becomes a problem you want it caught early so the medicines can be stopped
    Mari

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

    ~Winston Churchill~







  5. #15
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    Thanks, SS!

    Lol, oh yes, it's impossible for anybody with anxiety to have physical problems!

    I will do searches on plaquenil and methotrexate here. My rheum wrote a script for folic acid too so she's on top of it. The dosages are MTX 10 mg one day per week and plaquenil 200mg twice a day. Just started today and I will be patient.

    That's wonderful that the combo is helping you so much - 90+% normal would be so wonderful - happy for you! And fingers crossed for me!

    Thank you again!

  6. The Following 2 Users Say Thank You to janiew For This Useful Post:

    SleepyInSeattle (09-08-2013), tgal (09-08-2013)

  7. #16
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    Thank you, Steve. I should say thank you, gentlemen, too! I will stick around.

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    Thank you Figster and Tgal. Figster, I'm so sorry about your liver problem. Rheum checked liver last week, GP did earlier and the month, and pdoc did in May. She did tell me no alcohol - I was like no alcohol? - and she said one or two drinks max and very rarely at that. At the next rheum appointment in early October, I will ask her how often she will test.

    She also recommended an appointment with the ophthalmologist for a baseline on the eyes re: the plaquenil. So it is scheduled.

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    tgal (09-08-2013)

  10. #18
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    Sounds like your doctors are on-the-ball...that's great to hear! : - )

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    tgal (09-08-2013)

  12. #19
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    So sorry that your going through all this stuff i would just stay on all the doctors intil i got my answers!!! but i did want to mention i fractured my back in 3 places and have no idea how it happened , it first happened in early to mid 1990"s , and then it happened again 2 other times same vertebraes ...talk about alot of pain and it still has not gone away..so my question is how cant you no what happened ,,who knows its just crazy!!! i wish i new how it happened so it wouldnt happen again...i get nervous just rolling in my bed !!!Well i hope you feel better real soon......................

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