[MOL] Sandi - Lupus [02341] Medicine On Line

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[MOL] Sandi - Lupus

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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