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06/12/2008 14:52
bluejean888
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 Love your attitude, LupieToons!

Post edited by: bluejean888, at: 06/12/2008 14:56


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    Hey!
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07/30/2008 11:41
Wildflowergirl
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 Hi Im new also. I wanted to know how long you have been taking Cellcept? I took it 3 days and was in bed sick 3 days so only taking plaquinell. Im scared of Cellcept please tell me how your doing on it? Im in a flare right now and sad. I was doing great.

Thanks

Wildflowergirl
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07/30/2008 17:25
mumeva
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 I've been taking cellcept for about 5 years now and the only side effect I have is the bloatiness of course thats also prednisone too. I still have flares which I'm in one right now so I don't know if I need to change medications. I'm wondering if the body gets used to taking the same drugs and than there not as effective as first started. I take 3,ooo mgs daily of cellcept. How much do you take a day? I'm going down on prednisone and right now I take 3 mgs. and starting next month I alternate with 3 and 2. I'm also taking l00 mgs. of Imuran a day. I do take quite a bit of drugs so one would think that I shouldn't be flaring but I do. What does your rheumatologist tell you regarding cellcept? I would let the doctor know that it made you sick. I hope you get over your flare soon. Take Care,

Eva
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07/31/2008 13:04
may10
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 hi im christine i have sle lupus , what is cellcept i never heard of it
Hi my name Christine, im 48 years old i have sle and seizures due to my lupus. im from california lived here all my life. im married to a wonderful man. i dont work but being a housewife is a full time job!! well if you need someone to talk to or just vent im here for any one of you. so all of you take care of yourselfs.

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    lupus
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07/31/2008 13:37
may10
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 hi to everyone, i would like to whats the highest dose you can take with plaquenil and the higher the dose does it make any difference, im going through one of my flare ups right now and i feel miserable......
Hi my name Christine, im 48 years old i have sle and seizures due to my lupus. im from california lived here all my life. im married to a wonderful man. i dont work but being a housewife is a full time job!! well if you need someone to talk to or just vent im here for any one of you. so all of you take care of yourselfs.

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    lupus
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07/31/2008 17:07
mumeva
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 Cellcept is actually a drug used on people that have had organ transplant and they find that it works well with people who have kidney problems with lupus. I don't have kidney problems but I have central nervous system lupus vaculitis and it helps somewhat but I've been taking this medication for about 5 years and I think my body is getting used to it. My rheumy first tried me on plaguenil which would have been ideal but I became very allergic to it. I'm right with you I'm going through a flare right now as a matter of fact the last time I was in a slight remission was in 2005. Ever since my daughters wedding I started to flare. I didn't flare through the strssful period but after the fact. So I guess we can be miserable together.

Eva
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11/23/2008 20:52
laura61
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 My 15 year old daughter was just diagnosed in August. She was put on predisone. She takes 60 mg a day.When she started she retained water and from her waist down she was exstremely bloated. They put her on lasics and a low salt diet.The swelling has gone down but now she has very dark ,deep scares on her legs and waist. They are really bad.I also wanted to comment on her mood!! She can be a monster!! I would use other words which better describe her mood!I was wondering if it was the meds!What she is going through is very difficult but her behavior is scarey!I wish I could understand it so I could help her. ANY INSIGHT IS WELCOME!

lAURA
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11/23/2008 21:48
Faith19
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 I remember when I was diagnosed with Lupus way back 2006. I was in the stage of denial. I can be a monster too. So I understand your daughter's behaviour. Maybe she can't just accept the fact. Prednisone can give you moon face.. My self esteem was low. I was a picture of a healthy young woman that time. I felt just fine till I found out that I have Lupus. Your daughter is still in the stage of denial. all she need is a supportive family and frineds who can understand and love her no matter what, no matter and what she looks like. The situation of your daughter is likely the same with me. I first took 60mg of prednisone, after being bloated of that medicine and till my rheumatologist taper it to 5 mg till I finally stopped using it the memories of gaining weight from prednisone is still visible. I got a big and dark stretch marks on my waist. The skin was stretched when you gain weight..then when you lose weight your skin is back to normal so you can easily notice the scar. My dr.told me to have face mask always coz people taking immuno suppressant meds is prone to bacteria. Just understand your daughter, till she get used to it. Be with her and be ready to make her smile and cheer her up whenever possible. I am only 25 years old and I can say its been a long time since I have a flare ups. Im living my life as normal person with Lupus till my dr. told me that my hip is damage. I just hope Physiotherapist can help me or else on the coming years i have to have hip replacement which is sucks idea. Im not ready with that Idea..I dont think I have done everything I can to go for that idea. that is a big NO.NO.NO to me!..i still cry if Im thinking about it. But my God is bigger than my problem. Your daughter's behaviour is not a surprise for me. I can see myself to her and I can put myself to her shoes. Always tell her to wear sunblock ad always stay out of the sun if she can. Anyway,what kind of Lupus does she have?

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    Alone and isolated
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11/24/2008 11:07
laura61
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 Hi,

Thanks for writting back. Wow! You are so young too going through such hell.I'm so sorry to hear about your hips! What other symptoms have you had in the past and /are you having now? Did you have any kidney problems?This past August we finally got to see the rheumotoligist and that is when her urine showed high levels of protein and blood. Her urine was as dark as coffee. At this point she was so sick. From the rheumotologist's office she was sent right to the hospital. They did a kidney biopsy and determined that she had stage 4 lupus ( Lupus nephritis)In the hospital she received her first dose of chemo.How long were you on predisone? Did the stretch marks get alittle better after you lost the weight from the predisone?Did your hair fall out at all? My daugher has lost quite a bit of hair and it still is comimg out!The mood swings are a real challenge.Her hormones could also be part of her lovely moods! Everyone hides when she starts.She also hasn't had her period in 4 months.I guess it isn't unusual.

Thanks for the insight! It helps me answer the thousands of unknowns I wonder about day and night. I will pray for you ! Take care. I hope we will talk again. Laura
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