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Thread: I dont know how much more I can take

  1. #11
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    Hello Erin,

    Welcome to our Lupus group. You will find many members that are here to support each other. We have all been through it, or are going through it. Hang in there and I too, like Amanda, hope you feel better soon. Rest is best along with meds. You are never alone. Keep us posted and take care.

    Faith

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    ErinNicole (02-10-2010)

  3. #12
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    Hi Erin,

    Just noticed you are from California. What part if I may ask? It's nice to know there's someone else on the forum from the Sunny state. lol.

    Faith

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    ErinNicole (02-10-2010)

  5. #13
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    Thank you for the warm welcome I'm from Bakersfield. About 60 miles north of Los Angeles. Where are you from?

  6. #14
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    I'm from Bakersfield as well. Bakersfield - 3rd in the nation for Relay for Life fundraising. I wish there was a Lupus support group. Small world.

    In all the time I have been on the forum, I have never spoke with someone from Bakersfield.

    Please feel free to personal message me. It's always nice to talk or meet with someone going through the same thing. Funny, you mentioned the grocery store trip. I sympathized as I experienced something similar a couple of days ago.

    Faith

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    ErinNicole (02-11-2010)

  8. #15
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    Ok, I didnt mean for the laughing smiley to come up lol. I thought it would just be a smiley face haha. Small world. Who's your rheumy? I'm seeing Dr. Kim. Kinda thinking I might change to Dr. Berry. Still up in the air though. When I was talking about the store trip I was talling about Costco. I made it to the frozen section and I no longer had ankles. I had cankles lol. If you dont mind me asking...How old are you? Kids? Married? I'm 27, married. My husband is a 3rd grade teacher. My son is 4 and getting ready for preschool this fall. It's great to know someelse is nearby. It would be great to have a support group here. Hey, maybe we could start one. They have to start somewhere, right?

  9. #16
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    Hi girls,
    There seems to be a lot of us in WHL who live in California. I live a bit further up the coast from you, on the Monterey Peninsula. We also have quite a few members in Southern Ca. and quite a few in the San Francisco area or further north.
    I'm only going to be here for three years, then the good old AF will send us back to South Texas.
    I'm quite a bit older than you are, ErinNicole. I'm 52 and a retired Latin teacher. I've been married to my AF officer for over 33 years. We have 5 grown children, ranging in age from 23 to nearly 33 and we have 3 grandsons in three different states. The 10 1/2 yr. old is in Texas, the 4 1/2 yr. old in in Colorado and the 6 week old is at Little Rock AFB.
    I think that we need to choose a good location in Ca. and have a California members get-together someday!
    Marla

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    ErinNicole (02-11-2010)

  11. #17
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    Oh my, I am glad you posted....Your post just stopped me in my tracks honey. Those feelings are so lousy, but so normal...Pain, fear - all of it - we understand. I am a 42 year old Mom of two - 19 and 11 - though I stated getting really sick when my son was just about the same age - 4. I was not diagnosed (thus treated) however til years later. This may sound crazy to you right now, but it is a blessing that a doctor tested you right away and started to treat you. Once your meds get this flare under control, you will feel better - but I cant say enough how much I understand the feelings youre having right now.
    I am also on Imuran whcih I actually just started last week. I have had no side effects from it yet at all. I was wondering a couple things...1 - Did your doc mention putting you on any prenisone/steroids right now to get the flare under control? This medicine (or variation of a steroid) is usually the first thing done in an ACUTE flare like it appears your having, and some (Solu-Medrol) can reduce inflammation and relieve symptoms within hours. I ask because Plaquenil (I am on this as well) can take someitmes 3 - 5 months to really work, and Imuran also can take up to 6-8 weeks. My last flare brought me to the ER (trouble breathing due to inflammation) where the ER doc said - You are in an ACUTE flare - you need a B&*@# SLAP dose of prednisone to get this under contol. (I was already on 20 mg, but it just wasnt enough). They gave me Solu-Medrol in the ER Friday nite, and Saturday morning - though I was still in a flare and needed more treatment - I felt that awful leg pain and general pain/swelling feeling to be better. Long term, prednisone is not the preferred treatment as there are many long term side effects, but there is nothing better than that for an acute attack.
    The other question I had was if your doctor explained Imuran to you? Just wondering as when youre on it you have to be VERY CAREFUL about germs, ppl with infections, etc as it suppresses your immune system. There are some definite precautions with taking it. I definately take mine WITH food, as it can upset your stomach. Gosh, I dont mean in any way to throw more at you while you feel like this...Im sorry! I just know that sometimes the doctors just throw a medicine at us and dont explain it! (My original rheumie prescribed me Imuran without explaining a THING - the pharmacist had to inform me! )

    Anywyay, this is a wonderful place - FULL of compassionate and REALLY informative people and Im so glad you made it here. If you have any questions about the Imuran, feel free (there are some otheres here on it as well) to ask. In the meantime, as ppl said, take good care of yourself, rest when you can. Things will get better -
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    ErinNicole (02-11-2010)

  13. #18
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    PS - I am not a doctor - obviously, lol - and I hope it doesnt sound as if Im trying to be one, or act as if I know anything more than the next person...just some suggestions based on my experience to help you get the help you need to feel better. Hang in there
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    ErinNicole (02-11-2010)

  15. #19
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    Quote Originally Posted by laurid8967 View Post
    Did your doc mention putting you on any prenisone/steroids right now to get the flare under control? The other question I had was if your doctor explained Imuran to you?
    Hello Lauri. Nice to meet you. My Dr put me on 10mg of prednisone for 1 week back in January and then I tapered to 5mg for the following week. I felt great the first week, but as soon as I tapered it has all gone down hill. He really did not explain much to me about Imuran, but I did look it up and did a search on here about it. I'm a germaphob so I am already taking precautions, but I really need to make it clear to my husband because he is a 3rd grade teacher.
    Last edited by ErinNicole; 02-11-2010 at 01:33 PM. Reason: ETA

  16. #20
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    Wow - you both work with kids....that takes special people. Im so glad my post wasnt taken the wrong way! I didnt mean to sound agressive but was really moved by yoiur post and really wanted to help!

    That happens alot with ppl on the prednisone. We feel better, and when the taper starts, we flare back up again. Im down to 30 mg as of last night (Thank God) from 60mg starting 3 weeks ago, and Im really hoping I can continue downward as the Imuran starts to work. Many ppl do need to stay on some dose of prednisone, though, but docs will try to keep it at the lowest dose possible that still controls symptoms. But know that MANY lupus patients do NOT need to take alot of medicine, or do for a while then can come off as they go into remission. How you feel right now in this flare does not mean you will always feel like this (thank God for that!).
    THere is so much info and tips on EVERYTHING to do with this disease here - from the stickys at the top of the Lauri's Lounge Forum to the archived posts - that can help you thru this journey. Again, Im glad you found us and Im sure as you stick around you will see that you are not alone in this...
    Sending warm thoughts for your wellness - talk soon
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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    ErinNicole (02-11-2010)

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