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Home > Archive > Lupus Support > August 2006 > Men with Lupus
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| hmcidc@comcast.net 2006-08-05, 2:27 am |
| I was recently diagnosed with with Lupus (2) months ago and while I am
not pleased to have this disease it is at the very least comforting to
finally know what is wrong with me. I am a 47 year old male who up until
February was in pretty good health. Spent 21 years in the Navy as a
Corpsman and was well on my way in my second career. It started like a
very bazaar form or arthritis that would move from joint to joint
almost on a daily basis. The pain was much more severe at night and
began affecting multiple joints at the same time. There were days and
night where I was unable to walk or drive. I was told I had some weird
viral infection, then it went to Lyme disease (even though I tested
negative for it). I finally went to a Rhumatoligist on my own and after
a gallon of blood and a head to toe exam she maid the diagnosis. I am
also a type 2 diabetic and my doctor seems to think once we get me off
the steroids (what a wonderful drug) that by blood sugar will improve
(she thinks the diabetes may be caused by the lupus. Still learning the
do's and dont's of this disease but I am told it is not a life sentence.
I have been reading a lot of your posts and am learning a lot. I am
told the medication I was put on takes roughly 6 months to work but so
far the pain is much more manageable than when I first was stricken with
it. They say it is a woman's disease but more and more of men get it. I
still have a lot to learn and this looks like a good place. I may ask a
dumb question a time or two so please forgive me in advance.
Bill
| |
|
| In article <H42dnWUKjtUOrknZnZ2dnUVZ_vidnZ2d@comcast.com>,
"hmcidc@comcast.net" <hmcidc@cimcast.net> wrote
>I was recently diagnosed with with Lupus (2) months ago and while I am
>not pleased to have this disease it is at the very least comforting to
>finally know what is wrong with me. I am a 47 year old male who up
>until February was in pretty good health. Spent 21 years in the Navy as
>a Corpsman and was well on my way in my second career. It started like
>a very bazaar form or arthritis that would move from joint to joint
>almost on a daily basis. The pain was much more severe at night and
>began affecting multiple joints at the same time. There were days and
>night where I was unable to walk or drive. I was told I had some weird
>viral infection, then it went to Lyme disease (even though I tested
>negative for it). I finally went to a Rhumatoligist on my own and after
>a gallon of blood and a head to toe exam she maid the diagnosis. I am
>also a type 2 diabetic and my doctor seems to think once we get me off
>the steroids (what a wonderful drug) that by blood sugar will improve
>(she thinks the diabetes may be caused by the lupus.
If you get more proof, or medical references, for that I'd be most
interested - my wife is constantly assured that "there is no connection
whatsoever, you happen to have two diseases at once".
I half recall others saying that steroids can cause blood sugar
problems, but that doesn't mean that "steroids cause diabetes".
>Still learning the do's and dont's of this disease but I am told it is
>not a life sentence. I have been reading a lot of your posts and am
>learning a lot. I am told the medication I was put on takes roughly 6
>months to work but so far the pain is much more manageable than when I
>first was stricken with it. They say it is a woman's disease but more
>and more of men get it. I still have a lot to learn and this looks like
>a good place.
http://www.northeastlupus.org.uk/faqshets/faqs11.htm
>I may ask a dumb question a time or two so please forgive me in
>advance.
>
>Bill
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
| Sherry 2006-08-05, 4:28 pm |
| Bill,
Welcome to the group! Sorry you have to be here but this is the place to be
for the help and support we all need.
No question is dumb!!!!!! So ask whatever you want and someone will try to
answer or find the answer if it is out there.
Once again welcome to the group.
Sherry
"hmcidc@comcast.net" <hmcidc@cimcast.net> wrote in message
news:H42dnWUKjtUOrknZnZ2dnUVZ_vidnZ2d@comcast.com...
>I was recently diagnosed with with Lupus (2) months ago and while I am not
>pleased to have this disease it is at the very least comforting to finally
>know what is wrong with me. I am a 47 year old male who up until February
>was in pretty good health. Spent 21 years in the Navy as a Corpsman and was
>well on my way in my second career. It started like a very bazaar form or
>arthritis that would move from joint to joint almost on a daily basis. The
>pain was much more severe at night and began affecting multiple joints at
>the same time. There were days and night where I was unable to walk or
>drive. I was told I had some weird viral infection, then it went to Lyme
>disease (even though I tested negative for it). I finally went to a
>Rhumatoligist on my own and after a gallon of blood and a head to toe exam
>she maid the diagnosis. I am also a type 2 diabetic and my doctor seems to
>think once we get me off the steroids (what a wonderful drug) that by blood
>sugar will improve (she thinks the diabetes may be caused by the lupus.
>Still learning the do's and dont's of this disease but I am told it is not
>a life sentence. I have been reading a lot of your posts and am learning a
>lot. I am told the medication I was put on takes roughly 6 months to work
>but so far the pain is much more manageable than when I first was stricken
>with it. They say it is a woman's disease but more and more of men get it.
>I still have a lot to learn and this looks like a good place. I may ask a
>dumb question a time or two so please forgive me in advance.
>
> Bill
| |
| hmcidc@comcast.net 2006-08-06, 2:26 am |
| Thanks for the warm greeting Sherry. I am still very new to this disease
and have so much to learn. To he honest I am having a bit of a hard time
because last year at this time I was a healthy, fit and active middle
aged man and now I have lupus and diabetes. I guess I'm not quite the
superman I thought I was.It is nice to find a place like this where
others share the same problem and are willing to help total strangers.
Anyway for me right now I am taking an anti-malaria medication
(Hydroxychloroquine) and prednisone (along with a ton of pain meds. I am
told the anti-malaria medication is a good long term therapy and once I
completely ween off of the steroid then I should only use it for
flare-ups. It causes my blood sugar to go all over the place so I try to
use as little of the steroid as possible but it sure helps in a
flare-up. Anyway, that is my story (in brief) and once again thanks for
the warm welcome. Looking forward to talking with you all again in the
future.
Bill
Sherry wrote:
> Bill,
> Welcome to the group! Sorry you have to be here but this is the place to be
> for the help and support we all need.
>
> No question is dumb!!!!!! So ask whatever you want and someone will try to
> answer or find the answer if it is out there.
>
> Once again welcome to the group.
>
> Sherry
> "hmcidc@comcast.net" <hmcidc@cimcast.net> wrote in message
> news:H42dnWUKjtUOrknZnZ2dnUVZ_vidnZ2d@comcast.com...
>
>
>
>
| |
| Beverley 2006-08-06, 4:28 pm |
| Hi, Bill,
The steroid is going to completely foul up your blood sugar. You've also got
to be very careful with your food intake. What a lousy combination!
As for being healthy, fit, and middle aged, I do hope you've had a PSA test
done along with all those other blood draws. If not get one!
Lupus is such a kick in the butt for anyone. It requires often major
lifestyle changes such as staying out of the sun, etc. That means you don't
pull your shirt off and cut the grass, in fact, you probably should only cut
the grass in the late evening or very early morning before the sun has
actually risen.
There is also a frustration level because you can't do what you seemed to do
without any thought before the lupus diagnosis. Carefully planning your day
will probably help. You will learn to pace yourself because if you don't
you'll probably wind up in a flare and that seems to undo everything.
My doctor says that the best protection against the lupus is to stay
healthy. He believes that eating right, getting enough sleep, etc, and
hitting fast and hard when something is amiss is the best defense. So far
that seems to be working for me. That's not saying I'm in perfect shape or
pain free - I'm not. But it has kept me out of the ER and has so far kept me
from having any major flares or organ damage.
Lupus is not a woman's disease but it does effect more women than men. Also
the medical community is very slow to diagnose lupus for a variety of
reasons and probably don't even look or test for it in men very often thus
lowering the number of men with lupus diagnoses.
Personally I was pleased with the Dx once I knew enough about lupus because
now I know what is wrong with me. I know if something goes wrong they are
going to look very hard at the lupus as the cause and work to correct the
situation quickly. Also by modifying my lifestyle I've probably saved myself
a great deal of pain. But I admit I'd like to wake up in the morning with
lots of energy, no aches and pains, and feeling normal (whatever that is).
Welcome!
Bev
"hmcidc@comcast.net" <hmcidc@cimcast.net> wrote in message
news:BKCdnUOUvI5m6kjZnZ2dnUVZ_rudnZ2d@comcast.com...[vbcol=seagreen]
> Thanks for the warm greeting Sherry. I am still very new to this disease
> and have so much to learn. To he honest I am having a bit of a hard time
> because last year at this time I was a healthy, fit and active middle
> aged man and now I have lupus and diabetes. I guess I'm not quite the
> superman I thought I was.It is nice to find a place like this where
> others share the same problem and are willing to help total strangers.
> Anyway for me right now I am taking an anti-malaria medication
> (Hydroxychloroquine) and prednisone (along with a ton of pain meds. I am
> told the anti-malaria medication is a good long term therapy and once I
> completely ween off of the steroid then I should only use it for
> flare-ups. It causes my blood sugar to go all over the place so I try to
> use as little of the steroid as possible but it sure helps in a
> flare-up. Anyway, that is my story (in brief) and once again thanks for
> the warm welcome. Looking forward to talking with you all again in the
> future.
>
> Bill
>
> Sherry wrote:
to be[vbcol=seagreen]
to[vbcol=seagreen]
not[vbcol=seagreen]
finally[vbcol=seagreen]
February[vbcol=seagreen]
was[vbcol=seagreen]
or[vbcol=seagreen]
The[vbcol=seagreen]
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exam[vbcol=seagreen]
to[vbcol=seagreen]
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| |
|
| In article <L7mBg.1819$rd1.767@trnddc01>, Beverley
<beverly.brown28@verizon.net> wrote
[
>Lupus is such a kick in the butt for anyone. It requires often major
>lifestyle changes such as staying out of the sun, etc. That means you don't
>pull your shirt off and cut the grass, in fact, you probably should only cut
>the grass in the late evening or very early morning before the sun has
>actually risen.
Or rent a sheep...
[
>Lupus is not a woman's disease but it does effect more women than men.
In a white caucasian population it's about 1 per 2000 women and 1 per
15000 men. (Incidence is higher in other populations; gender-ratio not
known to me.)
>Also
>the medical community is very slow to diagnose lupus for a variety of
>reasons and probably don't even look or test for it in men very often thus
>lowering the number of men with lupus diagnoses.
True.
--
Andy Taylor [Chair, N E Lupus Group]
See http://www.northeastlupus.org.uk for more!
| |
| Sherry 2006-08-06, 4:28 pm |
| Bill, if you have not read "The Lupus Book" by Daniel Wallace, MD 2nd or
third edition you should. Dr. Wallace is a leading authority on Lupus and
his books are very imformative and I believe a must read for the patient and
his/her family. (also reasonably priced)
Maybe while you are taking the prednisone you should check your sugar levels
more frequently than you would normally and "cover" the highs with more
insulin and if low with a snack. I am not a diabetic but grew up with an
uncle that was and a sister (both juvenile onset) and had/have numerous
members of family and friends who are adult onset diabetics. I do believe
we have several on the group who are also diabetics so maybe they have some
suggestions. I do know that you need to keep your sugar levels as
consistant as you can in the normal range (something my sister was never
able to do until she started using an insulin pump...with that her life has
become much more "normal" and she is in better control of her sugar levels.)
I'm not really sure what one considers being "middle aged" so forgive the
next question if you are too young....<g> Are you by chance a Vietnam
Veteran? The reason I ask is I know of several who have been dxed with
Lupus or Lupus like illness and who are also diabetic. The VA is also
recognizing Diabetes in Vietnam Vets as a Agent Orange "disibility" and I
believe only have to prove being "In Country" and not having to prove being
in an area heavily sprayed.
It is normally pretty quiet here on the group on weekends and with summer
vacations before school gets started....so you should be hearing from others
soon.
Hugs,
Sherry
| |
| Beverley 2006-08-06, 9:25 pm |
| If you are a Vietnam vet contact me and I'll have my husband give you a
bunch of information. When my husband was there, it was a "secret", and did
not show on his DD214 - things have been declassified and he had no problem
proving his stay in that country. Also Sherry is very "up" on the Agent
Orange thing and was a tremendous help to my husband when he started down
the VA road.
Bev
"Sherry" <hurst1st@sbcglobal.nospam> wrote in message
news:WKoBg.4717$FN2.1160@newssvr14.news.prodigy.com...
> Bill, if you have not read "The Lupus Book" by Daniel Wallace, MD 2nd or
> third edition you should. Dr. Wallace is a leading authority on Lupus and
> his books are very imformative and I believe a must read for the patient
and
> his/her family. (also reasonably priced)
>
> Maybe while you are taking the prednisone you should check your sugar
levels
> more frequently than you would normally and "cover" the highs with more
> insulin and if low with a snack. I am not a diabetic but grew up with an
> uncle that was and a sister (both juvenile onset) and had/have numerous
> members of family and friends who are adult onset diabetics. I do believe
> we have several on the group who are also diabetics so maybe they have
some
> suggestions. I do know that you need to keep your sugar levels as
> consistant as you can in the normal range (something my sister was never
> able to do until she started using an insulin pump...with that her life
has
> become much more "normal" and she is in better control of her sugar
levels.)
>
> I'm not really sure what one considers being "middle aged" so forgive the
> next question if you are too young....<g> Are you by chance a Vietnam
> Veteran? The reason I ask is I know of several who have been dxed with
> Lupus or Lupus like illness and who are also diabetic. The VA is also
> recognizing Diabetes in Vietnam Vets as a Agent Orange "disibility" and I
> believe only have to prove being "In Country" and not having to prove
being
> in an area heavily sprayed.
>
> It is normally pretty quiet here on the group on weekends and with summer
> vacations before school gets started....so you should be hearing from
others
> soon.
>
> Hugs,
> Sherry
>
>
| |
| rob822 2006-08-11, 4:35 pm |
|
hmcidc@comcast.net wrote:
> I was recently diagnosed with with Lupus (2) months ago and while I am
> not pleased to have this disease it is at the very least comforting to
> finally know what is wrong with me. I am a 47 year old male who up until
> February was in pretty good health. Spent 21 years in the Navy as a
> Corpsman and was well on my way in my second career. It started like a
> very bazaar form or arthritis that would move from joint to joint
> almost on a daily basis. The pain was much more severe at night and
> began affecting multiple joints at the same time. There were days and
> night where I was unable to walk or drive. I was told I had some weird
> viral infection, then it went to Lyme disease (even though I tested
> negative for it). I finally went to a Rhumatoligist on my own and after
> a gallon of blood and a head to toe exam she maid the diagnosis. I am
> also a type 2 diabetic and my doctor seems to think once we get me off
> the steroids (what a wonderful drug) that by blood sugar will improve
> (she thinks the diabetes may be caused by the lupus. Still learning the
> do's and dont's of this disease but I am told it is not a life sentence.
> I have been reading a lot of your posts and am learning a lot. I am
> told the medication I was put on takes roughly 6 months to work but so
> far the pain is much more manageable than when I first was stricken with
> it. They say it is a woman's disease but more and more of men get it. I
> still have a lot to learn and this looks like a good place. I may ask a
> dumb question a time or two so please forgive me in advance.
>
> Bill
Bill..I too am a 58 yr old man with lupus..diag 7 years ago...It's a
horrible disease and I hate it with all my heart. Right now i'm going
through a "flare-up" and am losing all my hair. The one good piece of
addvice it to find yourself a Rhummy that will work with you. I live
in a small rural area and I have only one doctor to help me. I have
also noticed that some of the other "specialist" that I see really shy
away when you mention the word Lupus. DON'T TAKE ANY CRAP FROM THEM,
if you have to,move on to someone else.
good luck aand keep reading these post. it has helped me get info
that i normally wouldn't get
Robbie
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