Re: [MOL] Sandi - Lupus [02357] Medicine On Line


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Re: [MOL] Sandi - Lupus



Sandi:  I  don't have lupus; but do have a serious hyppthyyroidism (Secondary)
and had gone into coma, my adrenal glands have been severely damaged; so guess
who's also on pred. and steroids?  I know they keep me alive; but I still hate
them just the same.  Welcome to our group and glad your on board.  Your friend,
Lillian

Joicy Becker-Richards wrote:

> Dear Sandi,
> Thanks so much for taking the time to share this info with us; I think
> many of us know someone with Lupus, and want to better understand it.
> And please don't ever feel you are "butting in," this is your line, too,
> and we welcome the chance to get acquainted with you. It must be very
> difficult to be caregiver to your husband as you struggle with your own
> health challenges. Our Nanc is in a similary situation. But you both
> face your circumstances with a great deal of grace -- thanks for
> reminding us what a gift life is, and the alternative of not having some
> of these unpleasant "miracle drugs." Love, Joicy
>
> Mark & Sandi Newell wrote:
> >
> > Hi Mary,
> > I know this wasn't written to me but I have had lupus for 16 years and have
> > been on steroids (prednisone) the enitre time.  I have also been on chemo.
> > I have been monitoring this list because I am the caregiver for my husband
> > who has stage 111 colo/rectal cancer. Hope you don't mind me "butting" in.
> > I lead a lupus support group in my area and would be happy to give you or
> > your neighbor any current info. There is a lot of old info out there and
> > causes a lot of worry.
> >
> > Lupus is a chronic autoimmune disease which causes inflamation in peoples
> > major organs, joints, skin, blood etc. For those who have major organ
> > involvement which can be life threatening, steroids and chemo are used to
> > stop the immune system from attacking itself and trying to kill normal
> > cells and organs.
> > Prednisone in higher doses does indeed change the way you look as it causes
> > a puffy face and neck and causes weight increase. People who have serious
> > enough lupus to be on steroids and chemo should be seeing a rheumatologist
> > to monitor their condition. Even though no one wants to be on these potent
> > drugs, they are indeed life saving.  In 1950, lupus was considered a fatal
> > disease, but with prednisone and chemo, many who would have died are now
> > living and functioning.
> >
> > Chemo is not given at the doses that a cancer pateint gets.  Methetrexate,
> > Immuran and Cytoxin, etc. are given in much smaller dosages. This is very
> > common in serious cases. I would hope that your little neighbor is in good
> > hands and is on these drugs because they are keeping her alive. Children
> > can have more serious kidney and organ involvement.
> >
> > When your little neighbor's condition improves, hopefully she can be taken
> > off the pred and chemo and placed on anti-inflamitories and other less
> > damaging meds. This has not been the case with me, but many, many are.
> >
> > Lupus is very painful as inflamation seems to be always there.  Most who
> > have lupus can get by without continuous pred and chemo and they are very
> > fortunate.  But for those of us who can't, as much as we hate these drugs,
> > they are working miracles every day as I can walk and move and breathe.
> > I hope she improves soon.
> > Please feel free to write me for any info.
> > Sandi
> > mlnewell@mailbag,com
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