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Medical Forum / Diseases and Disorders / Lupus / January 2006questions
Hi all. i'm just diagnosted few months ago. sistemic lupus-kidney, 23yr old, male, smoker, i'm recovering from the biopsy stuff, and have a lot of questions about the disease and coping with it. right now i'm taking prednisone 20mg and low salt. 1) the results of a kindey biopsy study, how they look like?.(i have the results until jan '06) 2) which are the state-of-the-art treatments in 2005?, cellcept? 3) is better to stay calm, or get a job right now. 4) should i go for a rheumy doc, or a nephrologist is good enough?. thanx for any hints or advice. feel free to write to usenet.account.1_at_gmail.com to contact me. ------ philx > i'm just diagnosted few months ago. sistemic lupus-kidney, 23yr old, > male, smoker, i'm recovering from the biopsy stuff, and have a lot of [quoted text clipped - 8 lines] > > thanx for any hints or advice. hello phil and welcome. Lupus nephritis? Somebody else just recently posted as having been diagnosed with that, so once you have your biopsy results, perhaps she'll chime in. I think we'll have to wait out the biopsy report with you. It's too bad you're not employed and covered by insurance. Insurance with pre-existing conditions (since you've been diagnosed) often have to have extra insurance (cost - Cobra?) I'm not an expert on American insurance issues. There can be a number of specialists involved, but usually a rheumatologist oversees things. 1) neurologist 2) opthalomologist 3) rheumatologist 4) hematologist I think you're getting the right treatment for now, but I'm not an expert. You'll want to ask about bone thinning (using prednisone long term can cause that). It is a low dose and hopefully that'll keep the disease under control or maybe even wean down (with instructions from the rheumy later). Pred can cause mood swings, sleep problems and weight gain (increased appetite). I think since it's Christmas, it's best to stay calm and look at the job picture after you get the biopsy. Hope to hear form you often. J i'm not from u.s.a... but i'm doing fine with the insurance here... i'll take your advice and stay calm. Phil, I was diagnosed with lupus nephritis about 6 months ago. I can't answer a lot of your question, but maybe I have some insight. As far as treatments go, I believe the standard course is 6 months of Cytoxan (in other oral or IV form) and prednisone and/or CellCept and prednisone. Cytoxan has been used for over 20 years, but CellCept seems to be up-and-coming treatment and, in most cases, is getting very good results. In my case, I have significant kidney damage (I have about 15% of my kidney function left) and my lupus was very active, so my docs put me on a regimen of Rifluxin (IV chemo), followed an oral Cytoxan + prednisone. When I didn't respond to that regiment, I was introduced to IV Cytoxan + prednisone. I'm starting CellCept in February because the I'm not really responding to the IV Cytoxan - not to say that it's not working, but my rheumatologist and nephrologist and oncologist are in agreement that while this lupus is finally be controlled, something else is needed to improve my kidney function. I would definitely try to stay relaxed. Stress is a killer, literally. You're probably much weaker than you realize. I tried to go back to work in September. I made it two days and ended up in the hospital for 2 weeks with all sorts of systemic infections. As far as diet goes, you might ask a nutritionist about a low phosphorus diet. A diet high in phosphates can exacerbate kidney problems. I hope this information was helpful. Be sure to check back in when you receive your biopsy results. Dodie i have the full results of the biopsy, class V & III lupus nephritis, i don't know how to infer the kidney damage from the results, (is there any easy way to know this?). nephrologist talk until next week... -- How can you know if you are or not responding to a treatment?, -- did you experienced the side effects of cytoxan?. -- it seems like we have a similar manifestation of the illness, i hope dohdee to stay in touch. ------ philx >class V & III lupus nephritis, i don't know how to infer the kidney damage from the results, (is there any easy way to know this?). nephrologist talk until next week... Try this link, Phil: http://cerebel.com/lupus/nephritis.html It's pretty jargony, but I think it might help correlate the location of the kidney damage with the classification. This is what I understand from my nephrologist: when the tubes leading from the kidneys are damaged, there is less of a chance that the kidneys will respond to drugs like cytoxan. However, the results of CellCept studies look very promising overall. >How can you know if you are or not responding to a treatment?, In my case, oncologist and nephrologist have not noticed a marked improvement in my kidney function; actually, my kidney function has worsened. (Is that a word?) However, my lupus symptoms have eased, so that's a plus. >did you experienced the side effects of cytoxan?. I had some thinning of my hair, but that's about it. Thank goodness. Hopefully this information was helpful. Stay in touch! Dohdee |
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