Hello

[Robert30]

Hi. My name is Robert. I'm 30. I live in Arcata, California. I was diagnosed with Lupus in Jan. 2006. I was looking for information when I found this site. I haven't looked at all the members yet, but have noticed that most appear to be women. Is there any other men on this site? I know that Lupus is rare in men, but the symptoms are the same. Just looking for other people to talk to about the disease. My non-lupus friends aren't very supportive and don't believe me when I tell them I can't go into the sun or I'll get sick. Most of them have never even heard of Lupus. Also looking for advice on how to make people more aware of this disease, so they stop asking me what's wrong with my face when have the butterfly rash. I hate having to explain to every stranger what Lupus is, and then, because they've never heard of it, getting funny looks from them like I'm making it up. That's all I have to say for now.

Rob

[spellbinder]

:wavesmile:hi robert

welcome to the family, weather man or woman everyone here is wonderful and very supportive of any lupus survivor. you will also find a wealth of information on this disease.

sorry to hear that you have lupus, it sucks right out loud, but with help from others we can get thru it.

we do have a section on "men with lupus" but you can post on any topic that fits. we hare here to help, helping you helps us and vice versa. :grhug:

so are you on any meds at this time?? how does lupus affect you?? tell us your story and we can share ours with you.

feel better robert and again welcome

take care:foryou:

[sadieone]

Hi Robert,

Welcome to the site. There a few men on this website that have lupus. We even have an mens forum here called "Men with Lupus".
for the most part lupus does not know gender so we do share the same symptoms,, even the ones with non-supportive friends and family, ignorant strangers and frustration on how to communicate our illness.
I found that pamphlets, and web print outs about our illness left on beds, desks and dashboards to be very helpful in educating someone who really wants to know.
I also find it easier not to explain to strangers just to say i have an illness that will never go away.. I'll have my good days and my bad days. That usually quiets those who really don't care.. but those who do want more info i break it down to them pain by pain. But if you really want to get the word out the "Letter to Normals" in this website tells all.

I hope you find this website to be as valuable to you as it is to me.. I learned more information here than my ex- rheumy, hence the reason he is an ex.

The chat room is a wonderful place to meet new people and get tons of information in an instant.

Hope to see you in chat soon.

Take care
Vonda

[Joandublin]

Hi Robert:)

Welcome to the site.

I have moved your thread to our Men with Lupus Forum as you may got more male responses here. Yes, we do have a number of men here who regularly frequent the boards so hang in there and keep checking your post over the next couple of days.

We may not be the same gender but we do share one thing in common. I too was diagnosed in January 2006:)

The incidence of Lupus in women and men is about 9:1. So while it isnt very common, it certainly isnt rare, so take heart. There is some great information here on the main pages of the site about Lupus. Just click on The Lupus Site link near the top left of the page and there is a wealth of information, some of which you might want to print out and give to your friends. Here is one link from the main pages you might find useful

http://www.uklupus.co.uk/sun.html

Also many people with Lupus are also very sensitive to fluorescent and halogen lighting. Here is a short little article which you might also find useful.

http://www.itzarion.com/lupus-sun-uv.html

Welcome again and I am sure there will be others along soon to welcome you.

Take care
Joan:rose:

[Robert30]

Thanks for the welcome and advice on how to deal with strangers. I'm not on any medication, I can't afford it. I'm not even sure what kind of Lupus I have because I can't afford the blood tests. I have had a biopsy taken from my face that came back positive for Lupus. I am also light sensitive. I'm in a flare right now. I have the fatigue, arthritis, depresion, memory loss, and full butterfly rash. There's just too many symptoms to list. All I want to do is sleep, but I keep forgetting to go to bed. HaHa. The depression usually subsides by midday, but because of it I have trouble sleeping. Does anyone else have insomnia? I don't want to resort to sleeping pills, but I haven't had a good nights sleep in weeks.

Rob

[Tom]

Welcome Robert,

Wow small world! I went to Fortuna High school for a couple of years. I can understand what the people are like around there.

First, you have to find a way to get Plaquenil. It's our #1 treatment for Lupus and it really isn't that expensive. It will help a lot with your symptoms.

Second, if you're not getting proper sleep, that will work against you. Our bodies are constantly healing and need proper rest. Depression meds can help that part and doctors usually have free samples to try out.

There may be some agencys that help in your area, try calling around. Hope you can find the help you need soon. Good luck. :)

[KayCee31624]

Hi Robert,
I just read your post. I have SLE and have had it for most of my life. I am not a male, but that doesn't really matter with Lupus. I saw where you can not afford the blood work and medication that you need. Have you contacted the American Lupus Foundation in your state to see if they can help you obtain the medical care and medication that you need? I know I sure would. You really can not afford to not do anything for it, because the situation could become very grave for you. I hope you the best of luck in being able to get help to get your medical treatment and medication that you need. Hugs, Kathleen

[Robert30]

Thank you all so much for the warm welcome and all the great advice. I was not aware of the American Lupus Foundation. I looked at the site and located the California chapter. I am also going to make an effort to get the blood work done and hopefully get on some medication. The doctors out here don't seem to concerned about your health unless you have a way to pay for it. Unfortunatly, I don't have insurance or a large bank account to cover the cost of the testing. So I will see what ALF can do for me. Thanks again and take care.

\o/ Rob
/ \

[helloos]

Hi Rob just wanted to welcome you to the site. Many friendly supportive here. It does help to talk to people who know what day to day things Lupus brings, to find out the current treatments available, etc.

Does your state have a free care clinic there? I am in Mass. and we do here but you have to really not work I think or have low income to qualify for it.

It is worth checking into different avenues for free health care and meds.

http://i46.photobucket.com/albums/f107/LauraByWater/welcome/nonny-fallmouse-welcgrp444445454545.gif

[Bullwinkle]

Hi ya Rob. There has to be some way you can get your tests done, and get on the proper meds so you can have some semblence of a life. I am a male who has SLE, and I'm not too happy about it so far. I've had it for at least a year and me and my Drs. are still experimenting with medications, and I'm also trying some of the 'snake oil" or quackery options too.
I agree with Tom that you need to get on Plaquenil, however for me it has taken 5 months before I could say it's helping. It takes on the average 3 months to get into your system and really work. In the meantime you should be on Prednisone 15 to 30 mg. for starters. You'll feel better in a few days of been on this. And you definitely need to mention your lack of sleep. I take Immovane 1 to 1/2 half of a 7.5 mg. tablet. I don't feel totally rested but I do sleep. I'm like you, if I took 2 aspirins a year before all this happened to me It would have been alot. So I try not to take any more Immovane than I have to for sleep. But you do need to take something.
When I first started to get sick I was in the Hospital for severe blood clots in my lungs. The Emergency Dr. said if I'd not come in when I did, I would have been lucky to have lasted another hour or two. **** I had to go in , the pain was horrendous. And a very kind Nurse, bless her soul for saying this, she said when they put me on morphine for the pain " now Bullwinkle hwen you need another shot of morphine for the pain just ring for us (as she taped the buzzer to my hand ) she said " this is no time to try to be a hero, you buzz, we'll be right there." And boy did I use that stuff, and my whole attitude changed about trying to "tough it out" and my thoughts on medications.
Best of luck to you. But take control of your health, no one else will ,or has the same investment in it as you have.

[sjay66]

HI Robert and welcome my name is Steve, I live in Australia and have SLE and APS. You are not alone as far as being the only male here there are a few of us. I would like to say that I agree with all the other members post and at present I cannot add anything that has not already been said has said.

This is a great place to come for support and knowledge I do hope you continue to visit.

Best wishes to you Robert

Steve

[Robert30]

Hi everybody, it's me again. Just wanted to say it's nice to meet everyone and thank you all for the advice. I'm going to make an effort to see a doctor as soon as possible. I'm still learning to recognize the symptoms when they are present. I'm sure I've had Lupus for years, ****, we were born with it, weren't we? Anyway, I was just diagnosed in Jan. 2006, so I didn't associate the symptoms I have with Lupus. I just knew I had a rash on my face, was depressed, tired, my joints and muscles ached and I was going to mental health because I was hearing voices. I had no idea that Lupus was the cause of all of this, including the voices, until, due to a positive skin biopsy taken from the rash on my face, I was diagnosed with Lupus and began to search for information. I'm still not sure exactly what type I have, but because of the voices and the information I read about Lupus and the brain, all I can do is hope I'm not schizophrenic as well, I might have SLE. I'll find out for sure once I get the blood work done. The doctors will then know what kind of medication to put me on. I didn't mean for this post to be so long, so I'll say TTFN!!

\o/ Rob
/ \

[iandelta]

Hi Robert my name is Ian i am 48 have sle for about 10 to 12 years i live in u.k feel free to e.mail me if you have questions i will help if i can take care Ian

[Douglas]

Howdy, Rob, and welcome to the best thing there is about Lupus - this forum. There are not many of us males on the site or in the disease but, believe me, the women are most supportive. In one way you are lucky: you got a Dx without having to wait thirty some years of getting sicker. Who checks ANA in a man? Only women get Lupus, right? <insert a bitter laugh here please> I hope you can find an understanding MD and the $ to afford the necessary medications. Good luck!
Douglas+

[red24]

Hi Rob,

A late warm welcome to you. So sorry to hear you are having a rough go of it.

There is so many county medical places to go to here in the state of Washington. I have checked and have been told they are in every state. I do hope you can find one soon. They may be called many different things thru out the states. Here in Washington they are called health clinics. They go by income and there is real doctors there to treat you. My neice goes to one of the clinics and I have to say they treat her very good. Thru all the states they also have compasinate aide to cover the cost of meds.. This comes staright from the pharmacy companies all you have to do is apply at a docs. office in your case a health clinic. There is so many options out there for you Rob I do hope you take time to check on this.

You have been given such good advice by all the members here that there is not much I can add to it. My brother would not except the fact that men get Lupus until Roy Rogers son passed away from Lupus. Made him a strong beleiver. He went right out and got checked since I thought he may have Lupus like I do with all his symtoms. Turns out he had RA but like Lupus it is an autoimmne disease.

There has been so much info even in docs offices that mainly women get Lupus that it really doesn't give any kind of signal that a male may get it. I attend Lupus seminars and have to say there is several men that attend and do have Lupus. It is my hope that they will start posting that men are at risk just like women to get this disease. Lupus plays no favorites and is without a conscience. The best advice I would offer you is not to talk to people that don't understand. When you learn a lot about what is going on with Lupus is when you will know the right thing to tell people. It is sad that so many people are ignorant about this disease. For now it is a no win battle trying to explain anything to them. I have had RA and SLE Lupus for many years and still get the comment how I could look so good and be that sick. Still one of my biggest pet peeves. I have 3 grown children and they are the ones that tell people about me and they have gotten much better then me about explaining the disease. I ran out of patience and don't feel like explaining anymore. I have a very loving family that offers so much support. I have a lot to be thankful for. I do hope you have family that will do the same for you. Always remember tho Rob we are all family here maybe not by blood but by our hearts and we will always be here to help you thru the bumps in the road. Please never feel alone we are all in the same battle.

I wish you the very best and again welcome to this wonderful web site.

Your friend,
Deanna

[fenrus]

I'm 23, male, diagnosed with it a year and a half ago. my friends were pretty understanding when I was going through my flare.

though, I took almost a year off life basically to get my body in order, so I'm really healthy at the moment. so I don't really have a problem doing anything strenuous for the time being.