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  1. #1
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    Default new here.

    Its about 245 am, and I can't sleep and found this site. I just wanted to introduce myself. I'm 40 years old and a Mennonite mother of two. My daughter is 13 and labeled Gifted, and my son is nine and has Asperger's Syndrome, a high functioning autism. My husband is very supportive, and wonderful. I live in the eastern side of Pa, an hour north of Philly. I have been sick for eight years now, but only dx with lupus in Nov, when I accidentaly got a new rheumy. My old rheumy was too busy to see me when I was getting Remicade for what he said was RA, and I had to see his new partner. She looked at my case with fresh eyes, and ran more tests, and 24 vials of blood later told me I have lupus. One day when my son was a year old I laid down for a nap, and napped the whole day, and I've been sick ever since, eight years, but they could never figure out what it was. My old rheumy thought it was Fibro, which is true, and RA, which it still might be as well in addition to the lupus. The only things that kept being positive were the ANA and a high sed rate. I also have Raynaud's, and Type 2 diabetes. The lupus isn't affecting organs yet, except for cognitive changes, thank God. I am having horrible pain in my joints and muscles, and terrible fatigue. I've had rituxan in May, but its not doing anything so far, and my rheumy says she has no more ideas, and wants me to see Johns Hopkins or U of Pa. I had a bad reaction to either the rituxan or the solumedrol, where I was totally laid flat with extreme exaustion. The rheumy said she never saw me like that. Right now I'm taking way too much vicodin, which is not good for my fatty liver disease. I'm also on plaquenil and Imuran. I've loved reading all the posts tonight, especially the You know you have lupus when..... Anyway, sorry this is long, I'm glad I found you. Hugs.

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    Default SOUND LIKE YOU'VE GOT YOUR HANDS FULL

    I'm glad your husband is supportive- that really helps.

    I live in a rural area of Western Kentucky - there's a fairly large Mennonite population, but even more Amish. Most of the Mennonites here are farmers, but there are some carpenters and other craftsman.

    I'm sorry your meds don't seem to be keeping your symptoms under control. Hopefully your doctor will be able to come up with a new regimen to give you better control with minimal side effects. I would be careful about the vicodin - it's a lot more addictive than many people realize, and cause some pretty nasty withdrawal symptoms when you stop taking it.

    I'm really glad you found this forum and hope you will find it as welcoming and supportive as I did.

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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    Hi Mommygirraffe :lol:
    I am so happy that you've found us. I understand your frustration with medications and how they are affecting you as well as not being able to understand what is causing what. However, I'm happy that you've found a doctor who is responding to your symptoms and monitoring your treatments. Having that, and a supportive husband, will make things a bit easier to deal with.
    Methotrexate can be taken by injection or intraveneously. The injections are usually done into a muscle, vein (intrveneous), artery (IV), or the spinal cord. It is usually administered in a hospital or clinic setting by a health care professional. The dose of methotrexate, how often it will be given, and how it will be given may be different depending upon your disease and other medicines you are taking.
    I hope that this helps

    Peace and Blessings
    Saysusie

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    Hi Mommygiraffe! Welcome to our family. I've was at the lupus clinic at Johns Hopkins just last week and they are really great there! :lol:
    Diagnosed in 1990 at age 11.
    Trust in the Lord with all of your heart!

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    Thanks, guys. This site looks really wonderful, and I'm glad I found you. I can't take mtx, due to a past history with fatty liver disease, but thank you for the info, I wish that I could take it, I know it helps a lot of people, especially my friends that have RA, which is what they thought I had before this dx. Johns Hopkins sounds great, but today I made an appt with the Univ. of Pa, my rheumy's second choice. The money to get to Johns Hopkins makes it a little hard, but maybe if this doesn't work out. I see my current rheumy on Monday, she is so frustrated with my pain level and not having any more ideas. She really thought the Rituxan was going to work. She'd like to try IViG, but a test showed I'd have an allergic reaction. Remicade helped at first, but then stopped helping. Enbrel and Humira and Cellcept are out of my league finacially with my rx ins I pay a percentage copay. She was going to try cytoxan, maybe that could be another step. Its been a journey, especially a faith journey. I wouldn't be where I am in my spiritual life if it wasn't for His refining fire of this illness, my son's Asperger's (autism), and everything else. Life is never ever dull in this house. My daughter is having daily migraines and is showing signs of Raynaud's, which is worrying me. She is almost 14 (two weeks!) Not a good thing. But I walk with Him every step of the way, and some of the way He carries me, that's for sure. Hugs, Jen

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    Default HI, JEN

    A lot of the drug companies have assistance programs for people who can't afford the drugs they need. You may be eligible for some of these programs even if you have insurance -- you can ask your doctor for help in getting into these programs, or your pharmacist may be able to help.

    Is your doctor treating your pain adequately? Some doctors don't like to prescribe pain medicines, but if pain is interfering with your daily life, it needs to be treated just as much as your other symptoms do.

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    I'm seeing pain mgt. doc again Thurs. He might try methadone. I'm taking 2 7.5 vicodin right now every four hours, and no one, including me, is happy about it. We'll see what my rheumy wants to try next and look into assistance. Thanks again!!!!!!!!!!!

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