Lupus Support - young males with lupus

Author

young males with lupus

Ellen D

2004-10-03, 10:16 pm

Hi,

I am new to this list - my son was diagnosed last year at age 19. He
is on plaquenil, prednisone and was on methotrexate but just started
on cellcept two weeks ago. He had some problems 4 years ago but then
totally was in remission and they didn't think he had lupus. He has
had mainly joint and skin problems with possible mild renal
involvement but is a sophomore in college and has had a flare since
school started 5 weeks ago. Because of his age and gender and hi
antiDNA and low complements his doc wants to try to prevent organ
involvement. Right now his hands and knees really bother him and he
upped his prednisone to 20 mg and is impatient for cellcept to start
working - how long have people found it takes for cellcept to work and
what symptoms have people had when they started it. Are there any
other males/young adults on this list. Right now my son is not ready
to go on lists - he does not want to think about it all the time.I
have RA myself (for 30 years)

thanks to all for your help

Ellen

Andy

2004-10-03, 10:16 pm

In article <1819dd42.0409281033.25f5c731@posting.google.com>, Ellen D
<ejd5@case.edu> wrote
>Hi,
>
>I am new to this list - my son was diagnosed last year at age 19.

Doubly unusual - male; and young.

>Right now my son is not ready
>to go on lists - he does not want to think about it all the time.

It's quite common for a young person with Lupus to prefer to get on with
life, and delegate the worrying to their mother!

There's a Factsheet on "Lupus and Men" here which may help:

http://www.northeastlupus.org.uk/faqshets/faqs11.htm
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

2004-10-03, 10:16 pm

Ellen D wrote:

> I am new to this list - my son was diagnosed last year at age 19. He
> is on plaquenil, prednisone and was on methotrexate but just started
> on cellcept two weeks ago. He had some problems 4 years ago but then
> totally was in remission and they didn't think he had lupus. He has
> had mainly joint and skin problems with possible mild renal
> involvement but is a sophomore in college and has had a flare since
> school started 5 weeks ago. Because of his age and gender and hi
> antiDNA and low complements his doc wants to try to prevent organ
> involvement. Right now his hands and knees really bother him and he
> upped his prednisone to 20 mg and is impatient for cellcept to start
> working - how long have people found it takes for cellcept to work and
> what symptoms have people had when they started it. Are there any
> other males/young adults on this list. Right now my son is not ready
> to go on lists - he does not want to think about it all the time.I
> have RA myself (for 30 years)

Hello Ellen,
There are and have been males on the newsgroup.
They're the less wordy ones. They lurk a lot (I think).
I don't know their ages and I can't remember if we've had a young male or
not, since my memory is lousy and/or they may not tell us their ages.

I can't answer a lot of your questions, but I am struck by the memory of
many (prior) posters who flared after starting College. It's a whole new
wonderful world of freedom and learning and new experiences and so much to
learn and do, I suspect that most overdo. In fact, I know they do, the
city nearby is a university city and sometimes the first year is a "wash"
unless the students are really focused on their own health, rest and
studies.

I don't think that young persons have to think about it a lot, as long as
they first educate themselves about the disease, the risk factors for
flares, budget their time, avoid (protect from) UV exposures (see other
thread about possible sources of UV), and most importantly eat well and
get lots of rest. Of course that's in direct conflict with the life of
most collect students. Most want to take the maximum of courses, party
with their new friends, eat on the run (while studying or going from one
class to another), join various clubs (at school), take on new projects,
join sports, work part-time to make extra spending money and more.
The last thing (literally) on their list is doctor vists, rest and sleep.
I think some think that all they have to do is pop a pill and they can
keep up with the others. Hopefully your son will see things differently
and put his health and education first.

There's a book called "The Lupus Book" by Dr. (I forget) - 2nd Edition
There's lots here in KC's FAQ http://www.ghg.net/schwerpt/ASLFAQ/index.htm

The book is mentioned there, somewhere, so if your son has computer access
send him that website to read.
Or give him the book for a "start college or Christmas gift. Better he
take care of his body and kidneys now, then end up on dialysis or having a
kidney transplant if he doesn't.

My brother might have Lupus, but he's had trouble getting to a
rheumatologist to get properly screened. He's 54 but relates his symptoms
back many years and indeed that was around the time that he was at
University.
The one thing that struck me about him is that he's always required 9 or
10 hours of sleep all his life. I've always only needed 7 or 8. So what
I'm saying is your son must budget his time wisely and if he plans on
partying one night, he'd better allow some nap time the next day (to catch
up). In fact, he may need a nap time after he gets home from college each
day, in order to fulfill his projects and studies and not get behind.

I do go on, don't I?
Post anytime, we're here reading, even if the posts are minimal at the
moment.
Hugs to you,
J

Andy

2004-10-03, 10:16 pm

In article <4159F26A.4DCA77F4@execulink.com>, J <leaves@example.net>
wrote
[
>There's a book called "The Lupus Book" by Dr. (I forget)

Daniel J Wallace

>- 2nd Edition

Don't get the first by mistake!
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

Ellen D

2004-10-03, 10:16 pm

J <leaves@example.net> wrote in message news:<4159F26A.4DCA77F4@execulink.com>...
> Ellen D wrote:
>
>
> Hello Ellen,
> There are and have been males on the newsgroup.
> They're the less wordy ones. They lurk a lot (I think).
> I don't know their ages and I can't remember if we've had a young male or
> not, since my memory is lousy and/or they may not tell us their ages.
>
> I can't answer a lot of your questions, but I am struck by the memory of
> many (prior) posters who flared after starting College. It's a whole new
> wonderful world of freedom and learning and new experiences and so much to
> learn and do, I suspect that most overdo. In fact, I know they do, the
> city nearby is a university city and sometimes the first year is a "wash"
> unless the students are really focused on their own health, rest and
> studies.
>
> I don't think that young persons have to think about it a lot, as long as
> they first educate themselves about the disease, the risk factors for
> flares, budget their time, avoid (protect from) UV exposures (see other
> thread about possible sources of UV), and most importantly eat well and
> get lots of rest. Of course that's in direct conflict with the life of
> most collect students. Most want to take the maximum of courses, party
> with their new friends, eat on the run (while studying or going from one
> class to another), join various clubs (at school), take on new projects,
> join sports, work part-time to make extra spending money and more.
> The last thing (literally) on their list is doctor vists, rest and sleep.
> I think some think that all they have to do is pop a pill and they can
> keep up with the others. Hopefully your son will see things differently
> and put his health and education first.
>
> There's a book called "The Lupus Book" by Dr. (I forget) - 2nd Edition
> There's lots here in KC's FAQ http://www.ghg.net/schwerpt/ASLFAQ/index.htm
>
> The book is mentioned there, somewhere, so if your son has computer access
> send him that website to read.
> Or give him the book for a "start college or Christmas gift. Better he
> take care of his body and kidneys now, then end up on dialysis or having a
> kidney transplant if he doesn't.
>
> My brother might have Lupus, but he's had trouble getting to a
> rheumatologist to get properly screened. He's 54 but relates his symptoms
> back many years and indeed that was around the time that he was at
> University.
> The one thing that struck me about him is that he's always required 9 or
> 10 hours of sleep all his life. I've always only needed 7 or 8. So what
> I'm saying is your son must budget his time wisely and if he plans on
> partying one night, he'd better allow some nap time the next day (to catch
> up). In fact, he may need a nap time after he gets home from college each
> day, in order to fulfill his projects and studies and not get behind.
>
> I do go on, don't I?
> Post anytime, we're here reading, even if the posts are minimal at the
> moment.
> Hugs to you,
> J

thanks to all for your responses- we have Wallace's second addition.
My son has been really diligent about getting enough sleep - avoiding
sun - gave up soccer, etc.taking meds and he is doing really well in
his classes and finds he is too tired for socializing after that. The
thing that is really important to him is keeping in shape which now is
left to indoor weights, bikes. He is in a dorm but his suite mates do
not stay up late and all study a lot. That is why he is so frustrated
- because he is doing everything "right" and still is not feeling
well.He does not talk to his friends about the lupus and I think his
self-image is suffering.

Andy

2004-10-03, 10:16 pm

In article <1819dd42.0409290634.6255f55e@posting.google.com>, Ellen D
<ejd5@case.edu> wrote
[]
>He does not talk to his friends about the lupus and I think his
>self-image is suffering.

Would it help if he provided them with an extremely brief note on it?
Below is a "20 second speech" (you can fit it on a credit-card sizes bit
of paper), designed to grab someone's attention so that they ask for the
2 minute version...

LUPUS:
- is for life - treatable, but never curable
- can be fatal
- mimics other illnesses
- can take years to diagnose
- is not infectious
- can attack and destroy almost any organ in the body
- a disease with 1000 faces
- is not just "a women's disease"
- is painful and debilitating
- you look so well, you feel so ill

Systemic Lupus Erythematosus - - hard to say, harder to live with

For more information contact blah...
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

2004-10-03, 10:16 pm

Andy wrote:

> Ellen D<ejd5@case.edu> wrote
> []
>
> []
> - is not just "a women's disease"
> - is painful and debilitating
> - you look so well, you feel so ill

So what is the self-esteem issue? The fact that some think it's a "women's
disease"?
J

Ellen D

2004-10-03, 10:16 pm

Andy <andy@kitzbuhel.demon.co.uk> wrote in message news:<Cg0PVZM$HvWBFwdR@kitzbuhel.demon.co.uk>...
> In article <1819dd42.0409290634.6255f55e@posting.google.com>, Ellen D
> <ejd5@case.edu> wrote
> []
>
> Would it help if he provided them with an extremely brief note on it?
> Below is a "20 second speech" (you can fit it on a credit-card sizes bit
> of paper), designed to grab someone's attention so that they ask for the
> 2 minute version...
>
>
> LUPUS:
> - is for life - treatable, but never curable
> - can be fatal
> - mimics other illnesses
> - can take years to diagnose
> - is not infectious
> - can attack and destroy almost any organ in the body
> - a disease with 1000 faces
> - is not just "a women's disease"
> - is painful and debilitating
> - you look so well, you feel so ill
>
> Systemic Lupus Erythematosus - - hard to say, harder to live with
>
> For more information contact blah...

this might help but I think it is more a question of - if he tells
them about it they will look at him and treat him differently - maybe
with pity

Ellen D

2004-10-03, 10:16 pm

J <leaves@example.net> wrote in message news:<415B01FB.D0707D5E@execulink.com>...
> Andy wrote:
>
>
> So what is the self-esteem issue? The fact that some think it's a "women's
> disease"?
> J

a 19 year old guy looking in the mirror seeing hair loss, rash on
face, swollen joints and "someone who has a chronic illness" - maybe
you might have forgotten what it is like to be a guy that age! most
people he knows do not even know what lupus is, let alone that it is
a "woman's disease".

2004-10-03, 10:16 pm

Hi Ellen,
I would like to welcome you. I wish some of the men here would chime in on
this one. We don't see a lot of them, but I know they would have a different
perspective. I am female, but I do know what you mean about self-esteeem
issues. I found it difficult to view myself in the mirror. Somebody I hadn't
seen for a while did not recognize me when I was at the mall. I was
accompanied by a mutual friend at the time. The person was thoughtless
enough to tell me that she wouldn't have know who I was, except for seeing
me with someone else she knew. I was on heavy doses of pred at the time,
with all the side effects that entails. Our appearance is more important to
us than we realize, until something like this happens. This is especially
true in our teen years. I am sorry that I don't have anything much to
suggest. Perhaps your son might join a local support group, which would
include young people. The only problem is that, once again, most would be
female. However, the issues would be the same for all. It could be helpful
to him just the same.
BJ-Sk. Canada

"Ellen D" <ejd5@case.edu> wrote in message
news:1819dd42.0409300832.6033b3f6@posting.google.com...
> J <leaves@example.net> wrote in message
news:<415B01FB.D0707D5E@execulink.com>...
"women's[vbcol=seagreen]
>
> a 19 year old guy looking in the mirror seeing hair loss, rash on
> face, swollen joints and "someone who has a chronic illness" - maybe
> you might have forgotten what it is like to be a guy that age! most
> people he knows do not even know what lupus is, let alone that it is
> a "woman's disease".

Andy

2004-10-03, 10:16 pm

In article <10log3nsipmg14f@corp.supernews.com>, BJ <Babs@sk.nojunk.ca>
wrote
[
>Perhaps your son might join a local support group, which would
>include young people. The only problem is that, once again, most would be
>female.

That might or might not be a problem

--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!

2004-10-03, 10:16 pm

Ellen D wrote:

> a 19 year old guy looking in the mirror seeing hair loss, rash on
> face, swollen joints and "someone who has a chronic illness" - maybe
> you might have forgotten what it is like to be a guy that age! most
> people he knows do not even know what lupus is, let alone that it is
> a "woman's disease".

I understand Ellen, thank you for explaining.
The other thought that I had was we sometimes bemoan the "you look so good" syndrome.

Some think that the (sometimes) rosey cheek/butter fly rash (when faint) makes people
with Lupus look healthy and of course they can't see in our bodies if we have pain,
so to the public we look "healthy", so there's numerous sides of the coin to the
issue of having chronic illness.

My son (at my suggestion) (when he was your son's age and younger) decided he did not
want to "fit" (look like others at school), so he shaved the sides of his head and
grew a Mohawk much to the shock of his teachers and some of my family. I applauded
him for wanting to be different. He will always be "disabled" in a different way, but
he writes the most beautiful music and songs, reads extensively, designed his own web
page himself, refurbishes musical instruments (mostly guitars) and in his own way, is
a success and has a satisfying life.

I noticed at our local university there's still types like that, others have long
hair tied back, one guy that I admire shaved his whole head and had a tattoo of a
zipped tattooed across the back of his neck. My friend's boyfriend shaved the sides
of his head but has the "hair tie back" to look "neat and tidy" for work. Another is
a tried and true hippie, he's the most brilliant person I've ever met, but nobody
would know except if they talked to him. He knows science, art, computer programming,
he's excellent at carpentry, he excels at everything he tries, he's legally blind but
has always ridden a bicycle, and runs a complicated music board at the local campus
radio station, he's got a beautiful voice and sings and writes and does the "Poet's
corner". He's never let anything get between him and life. A drunk hit him on his
bike and left him there to die. But he was hospitalized and they had to "rebuild" his
leg with metal like the bionic man. He was in hospital for over a year. Did that stop
him? No. He's still riding his bicycle despite being in chronic pain. His hair is
long and wavy and "beatnikish". When he has to neaten up, he ties it back and he has
the most beautiful eyes and face, not to mention a nice butt :-) He's very
physically fit and would put his life on the line to save someone in trouble.
There's lots of good things to be found about each person.

My point is there's all types of people (looks) usually at college and in the world,
and the guys can have pretty neat hairstyles and/or hair coverings. I'm sure once
your son starts to look outwards (unless he's in a very strict College), he'll see
that he can create his own style and the girls will just love the look and he'll find
acceptance and admiration. Not that that will help his swollen joints, but it may
help him to feel more comfortable with his looks. If I was there, I would walk
through the campus with him and point out the various styles and caps and hair
coverings. I would like to hear that your son gets past this and excels in anything
that he decides to accomplish.

I do hope that treatment will help your son.
(sorry for the long rant)
Hugs
J

Ellen D

2004-10-04, 7:11 pm

J <eaves@example.net> wrote in message news:<415F2F18.AF17BEC5@execulink.com>...
> Ellen D wrote:
>
>
> I understand Ellen, thank you for explaining.
> The other thought that I had was we sometimes bemoan the "you look so good" syndrome.
>
> Some think that the (sometimes) rosey cheek/butter fly rash (when faint) makes people
> with Lupus look healthy and of course they can't see in our bodies if we have pain,
> so to the public we look "healthy", so there's numerous sides of the coin to the
> issue of having chronic illness.
>
> My son (at my suggestion) (when he was your son's age and younger) decided he did not
> want to "fit" (look like others at school), so he shaved the sides of his head and
> grew a Mohawk much to the shock of his teachers and some of my family. I applauded
> him for wanting to be different. He will always be "disabled" in a different way, but
> he writes the most beautiful music and songs, reads extensively, designed his own web
> page himself, refurbishes musical instruments (mostly guitars) and in his own way, is
> a success and has a satisfying life.
>
> I noticed at our local university there's still types like that, others have long
> hair tied back, one guy that I admire shaved his whole head and had a tattoo of a
> zipped tattooed across the back of his neck. My friend's boyfriend shaved the sides
> of his head but has the "hair tie back" to look "neat and tidy" for work. Another is
> a tried and true hippie, he's the most brilliant person I've ever met, but nobody
> would know except if they talked to him. He knows science, art, computer programming,
> he's excellent at carpentry, he excels at everything he tries, he's legally blind but
> has always ridden a bicycle, and runs a complicated music board at the local campus
> radio station, he's got a beautiful voice and sings and writes and does the "Poet's
> corner". He's never let anything get between him and life. A drunk hit him on his
> bike and left him there to die. But he was hospitalized and they had to "rebuild" his
> leg with metal like the bionic man. He was in hospital for over a year. Did that stop
> him? No. He's still riding his bicycle despite being in chronic pain. His hair is
> long and wavy and "beatnikish". When he has to neaten up, he ties it back and he has
> the most beautiful eyes and face, not to mention a nice butt :-) He's very
> physically fit and would put his life on the line to save someone in trouble.
> There's lots of good things to be found about each person.
>
> My point is there's all types of people (looks) usually at college and in the world,
> and the guys can have pretty neat hairstyles and/or hair coverings. I'm sure once
> your son starts to look outwards (unless he's in a very strict College), he'll see
> that he can create his own style and the girls will just love the look and he'll find
> acceptance and admiration. Not that that will help his swollen joints, but it may
> help him to feel more comfortable with his looks. If I was there, I would walk
> through the campus with him and point out the various styles and caps and hair
> coverings. I would like to hear that your son gets past this and excels in anything
> that he decides to accomplish.
>
> I do hope that treatment will help your son.
> (sorry for the long rant)
> Hugs
> J

thanks for your thoughts John

lilacladi@webtv.net

2004-10-05, 7:10 pm

I thought that was a wonderful thread and I found out some things I
didn't know. Thank you all.