Re: [MOL] Mary - Lupus [02326] Medicine On Line


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Re: [MOL] Mary - Lupus



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

At 07:49 PM 8/25/98 -0400, you wrote:
>Dear Nancy,
>
>I seem to recall you saying you had lupus.  My good friends daughter
>who is only 10 years old has systemic lupus.  My mother-in-law has
>lupus also but not systemic.  The ten year old is taking chemotherapy
>treatments of cytoxin.  Have you ever heard of this?  Poor little
>thing is a twin also and the prednisone they have had her on in the
>past has completely changed the way she looks.  She has so many
>problems from this lupus.  How long have you had it?  Any info would
>be appreciated.
>
>I would also like to order two shirts from you for Angelo and I.
>Should I just mail you a check?  How much are they?  I need a 
>Medium and  Large.
>
>Thanks,
>Love,Mary
>> 
>> Mary Ann,
>> It will be so neat for all of you to wear the shirts on our special MOL
day, I
>> wished every one would wear one also in honor of all our MOL's who lost
their
>> battle to cancer, and to the caregivers that helped them on their
journey.  It
>> is so hard to lose a MOL, all of you are so neat.  To me it is an honor
to be
>> a MOL, I really love my MOL family.  John and Mary Ann, I was so happy
to talk
>> to you both tonight, you truly are neat people.  God bless all the MOL's
>> Nanc
>> 
>> In a message dated 8/24/98 11:23:45 PM Eastern Daylight Time,
>> monty48@erinet.com writes:
>> 
>> << Nancy, you are tooooooo sweet for words!!!!!!  I was so surprised at
your
>>  >phone call tonight.  How sweet of you to call and get my husband's shirt
>>  >order.    THANKS again!!    Check will be in the mail tomorrow.    Mary
>>  >Ann
>>   >>
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