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n.mac
07-16-2011, 05:24 PM
Hi I am a 50 yr old man with lupus. I was diagnosed 15 months ago, up until then I did not have a regular doctor and my medical history basically consisted of having had my toncils out when I was 7. I went to a ear doctor because I had developed tinnitus from exposure to loud noises at work and it was starting to interfere with my ability to sleep, he had some blood work done without mentioning lupus and when the results came in he referred me to a ruhemy. I quite often wear safety glasses and a respirator at work,and would break out occasionally on the exposed skin(which is basically in the classic butterfly shape) which I always assumed was from chemical exposure. I have suffered from aches and pains for many years which I always thought was due to the physical nature of my job. I have always been very sensitive to the sun-extreme reactions to minimal exposures , but so was my father and I always thought this was due to my Irish ancestry.
I now have 2 doctors I see regularly and a full page list of medications most of which I cannot pronounce.
I'm still sorting out what is lupus related and what is old age and job related. Every middle aged construction worker I know has aches and pains- cement fishers have bad knees and backs ,drywall rockers have neck problems ,carpenters and electricians have finger and wrist problems etc.
I noticed here as with other sites I have visited not much male participation,I have learned a great deal by visiting as I'm sure many others have even if we do not actively participate.
I thank those of you who do for your for your efforts and sharing.

Niall

tgal
07-16-2011, 06:52 PM
Hi Niall! First let me welcome you to WHL! We not only have a moderator that is male we have several that post with as well. Like you I had not been to doctors most of my adult life until this fine disease decided to take hold. Looking back I had it much longer than I knew but it still took many doctors and many years to get a diagnosis.

There are so many wonderful threads here and some great information can be found either by searching through the old ones or starting a new topic on your own. Once again, welcome to our WHL family. I look forward to getting to know you!

lovedbyHim
07-16-2011, 07:04 PM
Hello and welcome Niall! You are right there are few men on this forum, but their words a dear to all of us words women. I know you experiences will be valued by many.

I too have trouble sorting out what is lupus and what is wear and tear from life. I was a long distance runner, I am supposed to have arthritis in my legs & feet. In time you will learn the difference between a lupus flair and normal wear and tear. At least I have.

Do you still have tinitis? I have a mild amount of it. I can't imagine it louder. Again welcome to a wonderful safe place to rest your head.

steve.b
07-16-2011, 09:24 PM
hi and welcome,
i am a male, so you are not completelly alone.
i turn 50 at the end of the year.

please click on my name, and read a little about me, on my profile.

looking forward to getting to know you.

n.mac
07-16-2011, 10:20 PM
Hello and thank you for your warm welcome. unfortunatly I do still have tinitus-for many years it was just my left ear but now it is both although the left is louder. I usually sleep with a radio or tv turned on low which helps to mask the noise of tinitus.

lovedbyHim
07-17-2011, 05:23 AM
Ok that sounds really difficult to deal with. I will not whine anymore...today.

steve.b
07-17-2011, 05:26 AM
I will not whine anymore...today.

does this mean you will not be on here?
or am i in trouble for another "smart alec" remark?

tgal
07-17-2011, 09:14 AM
does this mean you will not be on here?
or am i in trouble for another "smart alec" remark?

LOL No, she is not going anywhere. The majority of us can be "smart alecs" at times simply for the comic relief.

lovedbyHim
07-17-2011, 04:51 PM
does this mean you will not be on here?
or am i in trouble for another "smart alec" remark?

Ok Steve, you smart alec! As long as I am the one bringing the "whine" , you bring the cheese and Mari, I just love rosemary bread. We could have a party! Oh forgive me, make that rosemary wraps for Steve. Tehehe.. All are welcome but only the best "whine" please!

Peridot20_Gem
07-18-2011, 05:18 AM
Hi I am a 50 yr old man with lupus. I was diagnosed 15 months ago, up until then I did not have a regular doctor and my medical history basically consisted of having had my toncils out when I was 7. I went to a ear doctor because I had developed tinnitus from exposure to loud noises at work and it was starting to interfere with my ability to sleep, he had some blood work done without mentioning lupus and when the results came in he referred me to a ruhemy. I quite often wear safety glasses and a respirator at work,and would break out occasionally on the exposed skin(which is basically in the classic butterfly shape) which I always assumed was from chemical exposure. I have suffered from aches and pains for many years which I always thought was due to the physical nature of my job. I have always been very sensitive to the sun-extreme reactions to minimal exposures , but so was my father and I always thought this was due to my Irish ancestry.
I now have 2 doctors I see regularly and a full page list of medications most of which I cannot pronounce.
I'm still sorting out what is lupus related and what is old age and job related. Every middle aged construction worker I know has aches and pains- cement fishers have bad knees and backs ,drywall rockers have neck problems ,carpenters and electricians have finger and wrist problems etc.
I noticed here as with other sites I have visited not much male participation,I have learned a great deal by visiting as I'm sure many others have even if we do not actively participate.
I thank those of you who do for your for your efforts and sharing.

NiallHi Niall,
Welcome to our great family of WHL and we're all here to support one another in so many ways, as we're not Doctor's but know such alot about the symptoms as we all suffer such alot everyday and besides that you'll learn so much from the threads and what's linked with Lupus.

Lupus carries 80% in women to men but we do have male member's who go through such alot like yourself and you thinking it may be your Irish Ancestry...it can also be inherited off your parent's as mine was from birth but not diagnosed with Lupus till 3yrs ago.

Besides seeing a Rheumo, i suggest seeing a Dermo for your skin because i've had the malar rash (Butterfly) and it's so sore steriod creams help in such a good way, with your bloods showing Lupus what else as it showed besides refering any A1 Diseases or any Autoimmune diseases?? and are you now on meds to help you in anyway??.

It will be nice getting to know you Terry.

Elo
07-18-2011, 12:02 PM
Welcome to the site (: (belatedly)
As others have said, Lupus mainly strikes women..but there is a group forum on WHL specifically for discussions between men who have lupus.
It's so odd how so many of us just dismiss so much pain and aching to be "normal", and never really get it looked into. I'm glad that you did manage getting it diagnosed though, and that you're now being treated for it.

Anyways, just wanted to pop in and say a quick late welcome, even if I didnt have much to say! haha

tgal
07-18-2011, 03:02 PM
Actually Lupus, as well as other AI diseases, is not inherited. Just because a parent has them does not mean that the child will have them. What we do believe is that there is a gene that is passed down through generations but that doesn't mean that you will get the disease. There are many factors that come into play which decide if the disease will become active, the gene only being one of them. Even if someone has the gene there appears to be something needed to "turn on" that disease. No one is sure just what that is yet. Could be a virus, something environmental or one of several other things.

Hopefully one day soon scientists will find that gene and we will be one stet closer to finding a cure

n.mac
07-18-2011, 04:40 PM
When I first got diagnosed my issues were all skin related- bad rashes,muscle pain from sun exposure etc. I now avoid the sun-long sleeves,sun block etc and now my issues are more bone and muscle related. At my last ruhemy appointment I was told that my blood work showed I was tolerating the meds well but that some part of a sed rate showed increased markers for inflammation.so they gave me more meds.
The meds I currently take are hydroxychloroquine,prednisone,methotrexate,folic acid,tramadol plus some steroid cream which makes my skin peel ( so i don't bother with that)

Thank you for your interest Niall

Peridot20_Gem
07-18-2011, 05:09 PM
When I first got diagnosed my issues were all skin related- bad rashes,muscle pain from sun exposure etc. I now avoid the sun-long sleeves,sun block etc and now my issues are more bone and muscle related. At my last ruhemy appointment I was told that my blood work showed I was tolerating the meds well but that some part of a sed rate showed increased markers for inflammation.so they gave me more meds.
The meds I currently take are hydroxychloroquine,prednisone,methotrexate,folic acid,tramadol plus some steroid cream which makes my skin peel ( so i don't bother with that)

Thank you for your interest NiallHi Niall,
When i got diagnosed also 4yrs ago with the Raynauds mine was all skin related like yourself and i have to do the cover up job also.lol but my skins gone past steriods and my dermo wants me on Dapsone tablets with methotrexate but i've got a Rheumo who's being abit stubborn mate. I can't sit in shade no more as within 10mins i'm in a flare and come winter mainly banned from going out into the cold so i'm house bound alot.
I've got the bone issues and muscles problems besides the spasms i'm 42 and have come to using a 3 wheel rollator to get around, if not that my wheelchair and for walking distance and electric scooter...what a life i say half the time.

So your on plaquenil like myself i take 200mg tablets daily, they offered me prednisone but i refused being a steriod been on them in the past and i can't carry the weight gain it's way to much for my breathing, i'm on folic acid like yourself being an anaemic again besides having B12 Jabs for life, it took 6mths for my bloods to show that, as Lupus is terrible for fluctuating the bloods and can sometimes give off false readings and it thrieves on people with stress and depression makes you feel your symptoms even more.

Now i never had the peeling with the steriod creams but it come to ware they burnt my skin out in the end plus they're an aging process cream where you need to take 6mths break in between finishing a tube.

Niall it's nice of you to let we know what your taking besides and it will be nice to see you taking part in the threads also.

Terry

Peridot20_Gem
07-19-2011, 07:55 AM
Hi Niall,

How you feeling today and i always say this hoping another member as a day abit easier but i just hope it's one a little less pain free.

Terry

n.mac
07-19-2011, 04:39 PM
Hi Terry
How are you today?
I know what you mean about the prednisone and weight gain -I normally take it for short periods but even so I have trouble keeping my weight down.
It seems that eating helps me tolerate the meds-so far I haven't had any bad reactions to anything I have to take.
And of course with the aches and pains it makes walking long distances( easiest form of exercise) increasingly more difficult-especially now here in chicago we are in the midst of a heat wave-but that will be short lived before you know it we will be complaining about the snow!lol

Peridot20_Gem
07-19-2011, 04:54 PM
Hi Niall,
I've had my calfs aching again mate and the paralization on my face again of the sjogren's you feel like your havinga stroke it's terrible.

Trouble with steriods and it dow matter what they're for some people get sides affects and if your hormones change with steriods then you gain weight and it dow matter how little you eat..weights still gained.

I came to be on steriods 25yrs ago at 18 i had temporal-lobe epilepsy where you have autisum but the behaviour is simular to schizo behaviour they had me on a steriod of 250mg weekly besides having depression and then they had me in an asylum for 12mths and in 3yrs i went from 7 & half stone to 18st and loads of tablets, they rushed into my moms after 3yrs of drugging me up and pulled me off the lot in one go i went through hell for 6mths shakes the lot and within 6mths i was back to 9st but they caused me to have my right side of my brain damaged that does'nt work any more and i never knew this lot till i attended a brain surgeon at the QE, Birmingham...i've got a right history behind me.

I won't touch steriods for the lupus as they wanted me to have the prednisone jabs to ease the swelling of my joints...no way mate.

At 42 i'm in a right state if i need to walk out now it's my electric scooter and how you have it hot, we've got summer here but the temp today is low at 13 and i'm cold through the Raynauds and got a thermal vest on besides a fleece jacket...what a life mate.lol

Terry