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Old 04-12-2013, 09:04 PM   #1
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SLE? and Different Meds?


I was officially diagnosed with LUPUS SLE today, and I was put on Mycophenolate 500 mg "CellCept" this is the main medicine specifically for the lupus and 40 mg of Prednisone which I have read horror stories about taking for a long period of time. This all took 4 months to diagnose I was hospitalized for two weeks and they all thought I had Lymphoma. I have lost a lot of my hair, eyebrows, lashes, hair on my legs (Which not complaining about the legs), I lost 25 pounds, hands swelled up so bad I couldn't hold a pen. My shoulders hurt so bad, and my head is twitching. The Dr. asked me do I know what my Trigger was how am I supposed to know that? Do any of you know what your Trigger was?
Please help I need support I have no one here my kids are too young and My husband left me this past January because he thought I was making up the pain and fatigue to avoid him? I just need more than what the Dr. gave me!!
Tenill :/

 
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Old 04-13-2013, 03:35 PM   #2
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Re: SLE? and Different Meds?

Hi. I totally agree, it's bizarre & silly that your doctor asked you to define your triggering event. Gee, lupus EXPERTS don't know for sure why people develop lupus, only that it's likely due to some as-yet-undefined combination of familial tendency (genes) and environmental factors (viruses, exposure to things in the environment, etc.)

I certainly have no clue what my trigger was, but I had signs way back in early childhood. Have you read the "sticky posts" (permanent info posts) located right above the user threads? The "alternative criteria" lists things that occur earlier in life in people who later develop lupus. (I think I matched on 11 of the 14.)

Re: hair loss, lupus can definitely cause some of that. So can alopecia, which can occur secondarily to lupus (and other AI's, too).

About your husband's reaction, my heart goes out to you. I really don't find men in general good with health problems, theirs or those of others. My own husband was a major bust during my up & down years, not mean, just avoidant; and like your husband, he too thought *I* was avoiding *him*. (Why is it ALWAYS about them?! Hnnnh.)

For your own understanding and because you have 3 young children together, do you think you could sit & talk with your husband, now or sometime in the future? In a setting with a neutral party present? And armed with the REAL facts about lupus? BTW, for that, there are some excellent books written for patients (not too technical) that most libraries stock, which you could borrow cost-free. (Reading such books helped me a lot.)

Do you have adult support, family nearby and/or supportive friends? You could also look for "offline" support groups; even if there aren't any locally for lupus, something in the ballpark---like rheumatoid arthritis---could work.

Re: Cellcept, I know people here have taken it (I haven't, sorry), so to discuss it, you could (1) create a new post with Cellcept in the title, or (2) post on existing threads containing the word Cellcept (which would bump those threads to the top of the thread list). To find existing posts: select "Advanced Search" (blue bar above), enter Cellcept as keyword, and specify either just the lupus board or all boards to search across.

Re: Prednisone, it likely be too early for your doctor to know how long you'll have to take it. I know people who started at higher doses (60 mg), then fairly quickly were able to taper.

Did your doctor explain what your biggest concerns are, especially major organ problems (if any)? I'd definitely want to discuss that, including warning signs that you should report ASAP. And did he define a follow-up schedule?

Main thing right now is to know that many people with lupus fare pretty well in this day and age. That's hard to believe at first, especially before new meds kick in and since you've been on a downhill slide for awhile. The diagnosis can feel like a BAD turning point, when actually knowing that you have it and finally getting proper treatment can turn into a GOOD turning point. Post anytime, we're always here for you. My best, hugs, Vee

 
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