dyscoid lupus men

[1tommy]

Ok i see they have a special section for men with lupus but i havent seen any other posts, whats up, i finally got to hear from someone in indiana that has dyscoid lupus like me, and the feeling of wanting to hide from the world, this is a great site glad i found it after 10 yrs of searching for just 1 other male. And to know that maybe i am not the only one feeling that way is a great relief. thks all hope to talk to more of you soon tom :eek:

[Joandublin]

Hi Tommy

Its true there arent a huge number of men here on the site but there are certainly a few. Do you mean you cannot see any posts at all on this particular forum? If thats the case your personal settings might need to be adjusted.

Heres what to do:

Click into your UserCP (its on the left near the top on one of the lilac banners going across the page). This will bring you into your Control Panel. In the centre there are a number of options which you can 'tick'. Scroll down until you see the section Thread Display Options. The last note in this particular section reads:

Default Thread Cut Off

Hit the drop down arrow beside this and select 'Show All Threads'

Scroll to the bottom and press Save Changes.

Then you should see all the posts there have been to date on all of the Forums

Hope this helps

Joan:rose:

[tbunny1]

:wavey: Welcome Tom! It has been my experience that we are a very divergent group, but all have so much in common regarding this disease. I find I can learn and share as much with the men in the group as the women, and am sure it works the other way too!

My husband was diagnosed DLE 17 years ago, long, long before I even became symptomatic let alone diagnosed SLE. Go figure, his and hers lupus - what are the odds! We wonder if it was an environmental exposure of some kind that triggered the disease in both of us.

He doesn't come on the site much, pretty much thinks it's a "girl thing", but if you really need someone to talk to, I would be happy to pass along a message for you.

Be well ... Tracy

[Clare.T]

Hi Tom
I too am very puzzled about where the others with skin lupus are, men or women ! Do they never come out, are they all 'cured', or have they found some Magic Makeup. I have been looking for 32 years and it's not as if I had lived in an isolated small community all that time because I've moved from country to country, in large cities and in large ever changing communities. And believe me, I really look close !

I've actually met four women with my sort of skin lupus (subacute cutaneous, SCLE ) and one with discoid, who was the only one with a couple of visible marks. She had two scars on her face, one very small and the other rather worse that looked like a raggy edged bite mark, both 'burnt out', no longer active. I happened to know that she had lost almost all the hair on her scalp which was very badly scarred like one sees in the the more disturbing photos. She was very well made up using the specialised camouflage makeup Dermablend very skilfully for the scars with excellent make up on top of that to create a uniform natural appearance, except there are limits to how far you can actually conceal scars.

I have read that the ration of men to women with discoid lupus is considerably lower ( or is it higher) than for SLE, more like 3/4:10.

I strikes me that the make up limitations for men is one of the main differences between men and women coping with skin lupus plus the beard factor. It's arguably much harder for men to avoid the sun too. I am quite sure that men tend not to use forums and share experiences, whatever their health problems. Maybe that will change with time given the growing emphasis men are putting on their appearance, skin and body care, cosmetic surgery and so on, even make up.
The singer Seal is well known for his discoid facial scars which seem to enhance his image even marrying one of the world's most beautiful women but in the real world it is a terrible thing to live with. Even when kind people say they didn't notice or don't care, you jolly well care yourself and you know that the world at large is less forgiving. It crossed my mind that it could be easier to change sex than get first rate care for skin lupus.
I do think it's possible that men find it harder to complain and acknowledge their pain and thus harder to seek care and more reluctant to take medicines.

I hope you will get help here to encourage you to try the medicines that are often very effective. If it is too late to avoid scarring it will at least stop new lesions forming and reduce the likelihood of more systemic symptoms. Even if there is no blood work to support an SLE diagnosis it is possible to have various systemic symptoms like joint aches and fatigue or anemia and some heart and lung involvement all of which can for the most part be effectively dealt with medications like the anti malarials. Everybody with skin lupus should have regular checks for hidden signs of growing systemic involvement including a urine test and should know what the signs of worsening are - spread of lesions to below the neck for example, general hair loss starting.

If you have been diagnosed for more than a couple of months and not been offered oral medications, do whatever you can to find a dermatologist who knows about lupus skin who understand its terrible emotional and psychological toll and the dire effects it can have on all aspects of life. If you can't change doctors, arm yourself with the information you get here and demand proactive treatment.

If you are depressed consider taking an anti depressant - there's nothing weak or shameful about that either.

All the best

Clare

[Tom]

Hi Tommy

I have some pretty bad discoid scars and and don't really care much about what people think. It kinda works out, when curious people ask what happened they get to learn a little about lupus. My favorites are the ones that back away not knowing what it is. I tell them is not contagious and take it from there. :lol:

[KillingKev]

Hi there im a male with discoid lupas but dont really know much about it. Any info is great, is there a cure? or a cure on the horizon? If any one wants to chat let me know.

Kev

[Clare.T]

Hello Kev

There are medicines that can stop disease activity and symptoms spreading but there is no actual cure : lupus can start up again at any time if you are unlucky or from something unavoidable or not careful about sun exposure. That's why it is described as a chronic disease, meaning once you have it you always have it even when you go into remission with no symptoms with or without medicines.
Lupus is one of a number of autoimmune diseases caused by our immune systems not functioning properly. The immune system produces antibodies to fight bacteria and viruses, threats to the body's health from outside. In autoimmune diseases we start producing antibodies to our own cells. Different people are differently affected depending on our genetic make up, or so they think.
In some people only the skin is affected - the most common sort is the discoid type of skin lupus although there are other sorts.
Did your doctor not mention any treatment when you were diagnosed?

Most people respond well to treatment with a drug called Plaquenil or hydroxychloroquine. Topical creams can help soothe existing problems.

Bye for now

:)
Clare

[KillingKev]

No my doctor never gave me any treatment other than cream? is this normal, he just said to come back in 3 months.

He is the main registra at my hospitals derm unit.

Thanks

[Clare.T]

Hi Kev
Some doctors are more conservative in their approach than others so maybe he wants to see how effective the steroid creams are before prescribing an oral medicine. Remember to use the steroid creams very sparingly.
If you don't think there's been much overall improvement then you know now to ask him for Plaquenil if he doesn't suggest it himself.

:)
Clare

[Erskine]

Arrrgh, I just read this thread and it just kills me. No one should have to suffer this disease alone.

I'm male, and I started off with Discoid. I was also given a topical cream. That was 15 years ago. I had already suffered with SLE symptoms for almost seven years by then. For five years I was pretty stable, but since then I developed full blown SLE. That doesn't mean that you will. But the rheumy I see would have a fit if you didn't get a full work up for SLE and then get monitored every six months thereafter. I actually heard my rheumy give an intern a real tongue lashing for calling it "only discoid," as if the intern was looking for something a bit more interesting.

As to the lesions, I took nsaids and they helped a lot in the beginning. You could see how active the disease was by how angry the lesions were looking. I was a professional opera singer at the time, and though the stage makeup covered up the lesions, getting the makeup back off was like peeling paint with acid. I also had really bad alopecia, so my hear had to be really long to cover it up. I wore a pony tail all the time. I was singing Don Giovanni and any other role that didn't require a haircut. But the hair didn't stop the irritation I'd get at the alopecia sites though. For some strange reason every alopecia point was deeply scarred, so my head looks like a bruised peach now. I found taking extra calcium brought my hair back in full, but that probably won't work for most people. The lesions have lessened over the years, and the SLE symptoms have increased. The bruised peach look is going to be all the rage, I just know it.

About being male. There are lots of forums with men in them, not the least of which have to do with Vietnam. Over the years I've met a lot of men with various forms of lupus. I will do my best to keep participating in this forum. Lupus is our little war. And every soldier must know he/she does not fight alone. Don't let your doctor have any peace till he refers you to a qualified rheumatologist. And even when he does, call your local chapter of whatever lupus foundation or support group you can find, and ask those members who've lived with lupus for years who they trust. Don't let go of this till he/she tells you there's no sign of SLE, and then make a follow up for at least every six months thereafter. Be a pain. Persistence has it's rewards.

And if they call you a hypochondriac, tell them studies have shown that hypochondriacs have better outcomes.