Lupus Foundation of America - Men & Lupus

Variant form of immune receptor gene 'ups lupus risk in men'

Anthony — 2010-09-03T12:50:02 -05.00

Variant form of immune receptor gene 'ups lupus risk in men'

"…new research has discovered that males with a variant form of the immune receptor gene 'Toll Like Receptor 7 (TLR7)' are more likely to develop the autoimmune disease systemic lupus erythematosus (lupus)."

More...

Lupus Relief

william — 2010-09-01T18:04:34 -05.00

I contracted lupus in 2007 with very severe symptoms. I then came across Dr Chilton's book, Win the War Within, which recommended high doses of fish oil and primrose oil as a way of containing lupus flares. I take 1 capsule of fish oil and 3 capsules of primrose oil three times a day and I am virtually symptom free. On two occassions in the last 3 years I lapsed in taking my doses and my symptoms came back with a vengeance. Fish and primrose oil have avoided me having to use cortisons. I dont know if this remedy will work for others, but its been a lifesaver for me.

UCLA study identifies genetic variation linked to lupus in Asian men

Anthony — 2010-08-24T10:01:38 -05.00

Genes reside along long chains of DNA called chromosomes. UCLA researchers have found that a variation in a gene on the sex chromosome X may enhance an immune response that leads to lupus in men.

Systemic lupus erythematosus (SLE) is an autoimmune disease that predominantly affects women. Interestingly, researchers found that although the variation occurred in a gene on the X, or female, chromosome, its influence was stronger in men than in women. Humans hold two sex chromosomes — men have an X and Y, while women have two Xs. Previous studies have shown that genetic variations on the X chromosome contribute to the development of lupus.

In this study, researchers found that certain common variations of DNA sequences within a specific X-linked gene triggered a stronger response in the immune system, increasing the risk of developing lupus, especially in men.

This study was part of an international effort to study the genetics of lupus in broader ethnic groups. Researchers genotyped 9,274 Eastern Asians individuals, including those with lupus and healthy controls. The stronger genetic effects were seen in men, compared with women, and especially in Chinese and Japanese men. Further study will look at other ethnicities.

link

Sex and Death: Findings from the Caerphilly Cohort Study

Anthony — 2010-08-17T22:12:09 -05.00

Things we learned en route to looking up other things...

Sex and Death: Findings from the Caerphilly Cohort Study

Objective: To examine the relation between frequency of orgasm and mortality.
Study design: Cohort study with a 10 year follow up.
Setting: The town of Caerphilly, South Wales, and five adjacent villages.
Subjects: 918 men aged 45-59 at time of recruitment between 1979 and 1983.
Main outcome measures: All deaths and deaths from coronary heart disease.

Result: Mortality risk was 50% lower in the group with high orgasmic frequency than in the group with low orgasmic frequency, with evidence of a dose-response relation across the groups. Age adjusted odds ratio for all cause mortality was 2.0 for the group with low frequency of orgasm (95% confidence interval 1.1 to 3.5, test for trend P=0.02). With adjustment for risk factors this became 1.9 (1.0 to 3.4, test for trend P=0.04). Death from coronary heart disease and from other causes showed similar associations with frequency of orgasm, although the gradient was most marked for deaths from coronary heart disease. Analyzed in terms of actual frequency of orgasm, the odds ratio for total mortality associated with an increase in 100 orgasms per year was 0.64 (0.44 to 0.95).

Conclusion: Sexual activity seems to have a protective effect on men's health.

Sex and death are common variables in epidemiology, but the relation between them has been little studied.

In this cohort study, mortality risk was 50% lower in men with high frequency of orgasm than in men with low frequency of orgasm; there was evidence of a dose-response relation across the groups

The question of causation is complex, as with all observational epidemiological findings; several explanations are possible, but the evidence for causation is as convincing here as in many areas where causation is assumed

These findings contrast with the view common to many cultures that the pleasure of sexual intercourse may be secured at the cost of vigor and wellbeing.

If these findings are replicated, there are implications for health promotion programs.

DES and Lupus

scott — 2010-07-20T13:02:33 -05.00

Hi I am new to this group. I was diagnosed 10 years ago. But recently some information about studies regarding sons of mothers who took DES and auto immune diseases. I wanted to do an informal poll of those of us men who have Lupus and see how many had mothers who took DES. DES was a drug administered in the 50's to women who had miscarriages and problems getting pregnant.

If you are a 50's child like me and have Lupus, do you know if your mom took DES. While this is not scientific, it could be a meanigful start to pushing research into the subject.

Men with Lupus discussed on Dr. Oz - see the links...

NDNlady — 2010-07-16T12:18:31 -05.00

http://www.livedash.com/transcript/the_dr._oz_show-%28male_body_shock!_from_breast_cancer_to_lupus__shocking_diseases_men_get%29/2/KTVU/Thursday_July_15_2010/254660/

http://www.doctoroz.com/videos/shocking-diseases-men-get?page=2

Happy Fathers Day!

clotsalot — 2010-06-20T06:51:18 -05.00

Happy Father's Day to all you dads out there. Hope you have a great day!

Jan

I'm new to this blog...

Scubaman — 2010-06-08T15:53:04 -05.00

I answered one of the topics about being the only man on the Lupus board here, and since my post got buried, I thought I would change ot a bit and post it for everyone. So, here it kis: I have debated joining this for a very very long time, I decided today was the day. My name is Chris, I'm the oldest male survivor of SLE, (and I have discoid as well). I was the youngest male child to ever get it, and the tenth male in the US to get it. It has been a VERY long and hard road! I have written many messages to the Lupus Foundation over the years to ask why they never include men in the Lupus content of their website, they have NEVER answered me. So its been some time since i was here. i haven't checked the site at all at the moment, have they included anything on their webpage about all of us guys with SLE?? When I first got the disease, they told my Mom I wouldn't make it to 18 years old, that's always nice to hear when you're a youngster! Anyhow, I had to prove them wrong, LOL. My case is severe, my hospital stays and complications have been many. I fight for myself, meaning to try and be as normal as everyone else. I push myself to the limits, but at the same time, I know my limitations. I don't smoke or do drugs (only the ones the doc says to do!), I'm not a huge drinker, and I do my very best to stay active. I've done LOTS over the many decades of having SLE. I've sky dived, I have been a certified diver for many many years (DiveMaster), I even ride a nice big motorcycle, when I'm up to it, (LOL). During all of this I have been blessed to find a beautiful woman to marry me, one who can look past all the years of medical issues, and see "me" for who I am other than a medical "enigma". If you have a positive attitude, no matter what, and have good family and friends, you can get through this. My faith in God has also been a strong source in my life, I'm active in my church, as much as possible, and that makes me feel that much better, about everything!! Lupus comes from the world, and nowhere else, and God has used my illness to help others, so even if I could go back in time and had some chance to change all this, would I?? Hell no!! I love my life, I really do, and I wouldn't change it for anything! I am the most blessed person in the world if you ask me!! I'm not rich, I don't have land, (other than my small house), and I don't pretend to be something I'm not (try not to anyhow, lol). I'm just a guy, a guy who has SLE and is trying to make the best of it. My friend says that "the world treats you like it caught you sleeping with it's wife", (that just kills me, LOL), and he's mostly right, but I don't ALLOW that to be my focus. Every day I get up, I go to work, and no matter what kind of day it is, even if the pain is so bad I can't walk, its a BEAUTIFUL day. I CHOOSE to have the attitude I have, I guess it would be easier for me to whimper and whine about "poor me" and how having pain every day, and flare ups, and everything else is ruining my life, but nah, I'd rather be goofy and funny and have a great day instead! For years the doc's have wanted me to slow down, but they have finally come around, and they know that even though I may push my limits a bit, that and my attitude are what has kept me alive! So, greet each day without a chip on your shoulder, be happy and full of life, your attitude, along with family, friends, and faith can get you through this. Like I said, I'm having the time of my life, and I wouldn't change a thing!! God bless all of you! Continue to fight the good fight, because it is WELL worth it!!

Have question for you MEN

caregiver — 2010-04-18T02:05:20 -05.00

My son may or may not have lupus, given his hx. along with family hx. was dx. Autoimmune NOS. He is 15 yrs old. Medical hx.. Henock Schoelein Purpura when he was 6, Ebstein Bar at 10, Raynauds at 14, has never had an ounce of body fat (not even as a baby) Very tall 5'11" and still growing. Recently he developed horizontal stretch marks across his mid spine, at his hips and some starting on his legs. Hair is falling out, complains of joint pain and fatigue and he has had the infamous molar rash.

My question to you is, have any of you had these strange stretch marks? Everything else looks like lupus to me, can you have more than one autoimmune disease?

Prostate drug dutasteride 'may cut cancer risk'

debartolo — 2010-04-02T10:55:46 -05.00

A drug already used in men with enlarged prostates seems to cut the risk of prostate cancer developing, a large international study has shown

A four-year trial in more than 6,500 men found those who took dutasteride had a 23% lower risk of prostate cancer than those who took a dummy pill. The men in the study, published in the New England Journal of Medicine, were all at high risk of the disease. BBC

while on the subject gentlemen, am reminded - let me share a bit of wisdom received from a very old & well experienced proctologist who took care of a prostate issue experienced a few years ago:

Frequent ejaculations, particularly in 20-something men, may decrease the risk of prostate trouble later along in life, Australian analysts reported in the Brit Book of Urology International.

...they found men that had 5 or even more ejaculations weekly while in their 20s reduced their chance of getting prostate problems later by a 3rd.

Another study, reported in the Book of the North American Medical organisation, revealed that frequent ejaculations, twenty-one or even more a month, were linked to lower prostate trouble risk in older men, also compared to less frequent ejaculations of 4 to 7 monthly.

after a life long medical practice specializing in this, my doc was convinced, if we really want to keep that gland healthy, we gotta workout - alot ...at the very least, a minimum of twice a week he said, regardless of age.

(ladies - comment @ your own risk)

Band Together for Lupus on Tuesday, March 16 -- Make Your Voice Heard on Capitol Hill

LFAModerator — 2010-03-15T20:39:23 -05.00

Tomorrow, March 16 is the LFA's 12th Annual Advocacy Day on Capitol Hill.

Hundreds of lupus advocates from around the country have come together to educate Members of Congress about lupus, and encourage them to support increased federal funding for lupus research, awareness, and health care provider education programs.

Even if you cannot physically join us on Capitol Hill on Tuesday, you can still support the LFA's efforts on the 16th - and do it from the comfort of your home.

Make Your Voice Heard

Simply go online to the LFA's advocacy action center located at http://www.capwiz.com/lfa, and you'll see a section called "Action Alert." Click on the link called "Take Action." Then, you'll enter your zip code, which will then bring you to a window which displays a pre-populated email addressed to YOUR elected officials. If you want, you can modify the email to share your personal story. When you've completed your message, click "send message" at the bottom, and that's it.

Please ask your family, friends and co-workers to take just a few moments to also speak to their Members of Congress, and tell them why additional funding for lupus research is so important.

The link to the LFA's advocacy action center again is http://www.capwiz.com/lfa.

Together, we can change the future of those affected by lupus. Thank you and we look forward to an amazing day on Capitol Hill on Tuesday, March 16.

27 YO Male with possible Lupus

Koochy — 2010-03-02T17:10:12 -05.00

Hello all. Im new here and I wanted to share my story and get everyones opinion about things.

It all started about 5 months ago I started feeling real fatigued and had a lot of body aches. I chalked it up to my job. I am a Paramedic and I was recently switched to a real busy ambulance station and was working more hours and harder than I did before. I started having severe tachycardia(fast heart rate) and palpitations. I went to the emergency room and it was discovered that my potassium level was very low (3.1) - normal range starts at 3.5. At that time I also had some other symptoms of low potassium which I will not go into to save some typing =) . My PCP wrote this off as an isolated incident. Well it happened again. Same thing. So he once again was puzzled but said he would draw my blood every week and monitor it to see whats going on. I then started having chest pain. I presented to the ER again and was admitted. Once again I had a potassium of 3.1. I had a full cardiac workup while in the hospital and everything came out fine. The doctor started me on a potassium sparing pill. It seemed to work OK. But I then had an episode of horrible body aches and fatigue. I went to the ER again and once again potassium at 3.1. Every time they give me potassium and the symptoms go away. After this visit I was sent to an Endocrinologist and a Kidney Specialist. Both Docs did and are still looking into this potassium thing but have not found anything too interesting.

This is when it got bad...... I had some symptoms of low potassium again.. body aches fatigue extreme thirst. I went to the ER because I was feeling very faint and almost going to pass out. I was discovered to have a potassium of 2.9. The physician in the ER happened to take an interest in my case and looked at all my past records and wanted to help me. So he gave me potassium and then he sees patients as a PCP 4 days a week right near my home so I set up an appointment with him. He did a lot of blood tests. 1 was an ANA screen. It came back positive 1:640 for SSA. Since that visit to the ER my symptoms have not resolved. I have had the following symptoms for over 2 weeks:

Extreme Fatigue, Headache,Body Aches (muscle and joint), slight dizziness, low grade fever 99.1-99.3, dry mouth, dry eyes, some numbness in the legs and arms, and chest pain. Thinking back I do sometimes get rashes but not on my face... on my chest and arms.

I was sent to a Rheumatologist she started me on a medrol dose pack and drew more blood. Now Im waiting. My symptoms have not resolved and I am scared. I know that a positive ANA is taken more seriously when found in men than women.

The Rheumatologist said that I dont have kidney involvement... however can this low potassium be considered kidney involvement? Has anyone else had this problem with low potassium? Any help would be great! And if there are typos I am sorry but Ive been in kinda a brain fog recently =(.

Men talking to men about lupus.....Please women with respect,only men respond

sportsbird66 — 2010-02-14T23:43:50 -05.00

I am 43 and have had SLE for 11 years. I have had multiple surgeries and been in the hospital countless times. I take 22 pills a night and thank God for his help he gives me and my wife and I am not trying to be rude or disrespectful,but,ladies please,do not respond to this site.......I need to reach out to men only here...to see how they are feeling....what their fears are..............God bless

Live in the bathroom?

Grumpyone — 2010-01-18T00:08:32 -05.00

I have a question about the cursid bathroom trips. I have been checked from head to toe for everything I can think of and there seems to be nothing (except Lupi) wrong with the prostrate or anything but I have to get up some times every hour to pee. During the day it dont seem as bad but I dont think I pay as much attention to it then as it dont interfer with my sleep. My sleep is important to me as I cant ever seem to get enough. I get up and brush my teeth and want to go back an take a nap Question is is this common in some lupus cases to have a extremely over active kidney ??? Or is someone somewhere possibly missing a problem here?? Im on pred, imuran, plaq and several small fry things for drugs.

Thanks

Grumpy

37 male self diagnosis

thall — 2009-12-30T15:29:59 -05.00

I think that I may have Lupus, it seems to be the SLE. Blood tests are positive for auto immune. I have never experienced a sensitivity to light. I have very little redness on my face, however I suffered from eczhema when I was younger. I can almost eliminate the joint pain / stiffness with 800mg Ibuprophen. I always have a sore throat and experience fatigue after about 6 hours in the day. I think a kidney biopsy will be the next test, as I have a dull pain in my side. All this began Dec 9th, I thought it was the flu.

Many posts ive read seem to imply early treatment. What exactly needs to happen ? Do any of you have a sore throat all the time ? Financially what do you do, just go on disability ? Its taking me about 4 hours to get moving in the morning. I have been strolling into work about noon, and I'm good for about 5-6 hours, then ready to crash.

Any comments would be greatly appreciated.

Thanks Tony

brain fog in men with lupus

lupey4dogs — 2009-12-09T21:21:07 -05.00

I had a discussion today with a friend about "brain fog". She tried very hard to say that it wasn't anything more than menopause. It was very frustrating. I have learned to just listen and keep my mouth shut.

My question to you men folk is, you do get brain fog and all the other lovelies that come with Lupus brain involvement, correct?

Hypothesis As To Why Men Develop Lupus

debartolo — 2009-09-13T19:46:50 -05.00

Women develop lupus nine times more often than men. Research implicates hormones and having two X chromosomes as risk factors for women. However, little is known about why men develop lupus.

Dr. Bruce Richardson of the University of Michigan has received a LFA national research grant to study lupus in men. In this video, Dr. Richardson describes his research project and his hypothesis regarding the role epigenetics plays in the development of lupus in males.

VIDEO LINK

men & lupus

debartolo — 2008-02-10T14:59:02 -05.00

what? am i the only guy here?