[gbstewart]

I am a 62 yo male, finally diagnosed a few months back after three years of cyclic symptoms of fever, joint pain, and lots of fatigue. To say my symptoms created a diagnostic dilemma for the physicians that saw me is an understatement. Practically all blood tests, etc., have been marginal. It actually took two Rheumys to put me in the SLE category. Some improvements after months of Placquenil and Methotrexate therapy. Three years ago I was a vibrant man who enjoyed a very active life. Things have gone a 180!
Like to hear from you!:wink2:

 

[onetay]

gbstewart,
I hope you don't mind, but I am a lady. I started out with a rash everytime I was helping my boyfriend at the time do yardwork ( which was his business ). We thought I was allergic to the grass, the sun, the heat, or the work ( I am a workaholic lol ). The doctor was so puzzled he sent me to a dermy. Thank goodness he had a sense of humor cause I look like I had the chicken poxes. He tried a couple of things that did not work for long. He found that the only thing that helped a lot was steriods. It never went away but it started to, then back strong again with the rash. Finally after the second year of this he said he had enough it was byopsie time. I remember him saying if I was allergic to something like the sun or grass it would tell us and we will hope it is not lupus. Well it came back and he wanted me to stop you the office, no appointment needed come asap. He sat me down and said it came back and it is the most clear byopie of sle he had ever seen. I am sitting here thinking ok what is that? He said it is lupus. Ok it is lupus give me a pill and we will get rid of it. That is when he told me it all. Well that was 17 years ago and a better life ago.

I had 2 different leisions that come out on my skin. I did pretty well on the placquenil until I lost medical coverage and went 2 years the first time without treatment. I finally got some coverage back and then 13 months ago lost it again. The gp that I had been seeing said that it is not healthy to go on and off the meds like this. I have developed sleep apnea, bone spurs, tennis elbow, migraines, fatigue (server most of the time), stomache upset ( off and on ), joint pain (all over ), I get heavy legs and arms as the day goes on, and this is just a few of the problems. One would think I was 90 but I am not I am only 41 years old. I have had to start learning to work less hours which upsets me ( I went from 80+ hours every 2 wks to 48 hours every 2 wks ).

I am sorry about going on and on but it is hard to see something like this take normal healthy people and turn their world upside down in a matter of days, weeks, or months. I hope you find a way to deal with your disease as I am learning still to handle it all. I wanted to welcome you and hope to chat with you in the chat room soon.

 

[SoCalEric]

I was diagnosed about 13 years ago, at the age of 32, after a few years of troubles my Doc. summed up to "a bad phase". I KNEW he thought I was a hypochondirac, even caught him rolling his eyes once when he entered the room. Did have a few serious troubles he summed up to bad luck (Phlebitis, Pulmonary embolism). Well, after awhile things started to get much worse. I remember when I got the diagnosis well. My family and freinds were going to Yosemite for a camping trip. I was worried about going as I felt horrible. Saw the Doc. a couple of days before we left, he told me to go and have a great time, it would be good for me. Felt horrible most of the trip, tried to do a short hike with friends and thought I was going to die. Got home a week later and had MANY messaages on my answering maching from the Doc.. He sounded very concerned, wanted to know why I wasn't returning the messages. One message was from his nurse who remembered that I was going to be out of town and said she would remind him (nice to know he was listening when I had been there the week before!). Final message was from the Doc., said to call as soon as I got back, that he had diagnosed me with Lupus Nephritis (he had been noticeing blood and protien in my urine). Got home and listened to the messages..had NO idea what Lupus was, never heard of it. Called my Mom who I knew had a medical dictionary (no internet then), she looked it up and read it to me. Saw the Doc. the next day. He did send me to a very good Rumy that I still see today. My health went downhill fast from that point. They did a biopsy on the Kidneys, they looked horrible. I started chemo w/cytoxan very soon afterwards. It worked wonders and after about a year and a half of chemo I was feeling great. Next trip to Yosemite I hiked to the top of Half Dome, 17miles, 5000 feet up...it felt incredible! Nephritis did return years later, chemo did the trick again. It's been nearly three years since my last round.
So there ya go...my story

Best Wishes,
Eric

 

[gbstewart]

Thanks for the stories

It is so therapeutic for me to hear of others stories and to know that I am not out here alone with this obscure and crazy disase..the allusive wolf!

 

[lupyman]

gbstewart, I am a 45yo male. I have SLE with swollen glands and terrible fatigue. Plaquinel is working (finally) to help. I have not missed workin 2 months. My blood tests also have been marginal at times. Also high protein in my urine tests and last week some blood in the urine. They are watching me closely for CNS involvement high short term doses of prednisone have knoked my headaches out. Once I came to terms with the SLE I made a deliberate attempt at staying as active as I can. THIS REALLY SEEMS TO HELP. Its not easy, and rest is still VERY important but I feel like I am back in control somewhat by staying active. Please talk to your Dr. about some kind of regular excercise routine. We can't live forever but we can take charge of the time we do have. Good luck and God Bless. P.S. Check back with the good folks onthis forum,often. Just reading it can be helpful. Lupyman still tickin'

 

[GALupie]

Hi, I'm 29 (and new to the board) and was diagnosed with Lupus after 6 years of trying to figure out what was wrong with me. I know they say it is hard for men to deal with having lupus, well I believe it's just as hard for Dr.'s to believe men can have lupus. I was diagnosed from gout, rhumatoid arth., and even luekemia! Anyhow, long story short, I was diagnosed last year and have been looking for a support group and see that I'm not the only LUPIE man out there.

I'm sorry you are having such troubles, but after a long year of fighting and getting my meds regulated properly, I FINALLY had good blood results my last visit. Life seems to be getting back to normal, and I'm glad because me and my wife are expecting our first child next month.

I have been able to get on a good exercise routine, workout, and get back to doing my "normal" activities that I had always enjoyed.
Still rough at time, it is definitely no walk in the park, especially getting up in the mornings, but I have just decided, I'm going to control the situation and not let it control me, as much as I can.

 

[bundy]

hi 44 year old male in uk first diagnosed with lupus at the age of 14 hair loss fatige tiered ness not eating admitted to hospital after having a convultion pou on prednisolone all under control till early 20s wen i started with oedema on ankels(swelling) or fluid retention admitted to hospital for kidney biopse by my mid 20s went in to renal failure endde up dialising for 17teen years then got a kidney transplant witch is duin fine naw havent had meny problems with lupus once kidneys failed but hads lots of problems while dialisis

 

[lupyman]

That is an awesome attitude! Yes mornings are a little rough for me too. Lupus sucks but life is great! When you hold your new baby for the first time, everything changes. I have 4 girls with 2 still at home. One thing I do, is imagine how it will be when I become a Grandpa. My 26 year old is saying they are going to wait a few years before having a baby. I'm really looking forward to having a grand child. And think about this, by the time your child is grown and ready to have a child, SLE may be cured. Take care and God Bless - Lupyman

 

[Smile Of Life]

I'm 39 in London and diagnosed a year ago when my joints were so bad I couldn't move or hold anything. Anti malarials helped some. But I started methotrexate 3 months ago and that has helped tremendously.

I've had symptoms since I was 13 and have suffered with arthritic hips that need replacing, collapsed lungs and my heart trying to give up.

I've stopped working now due to the tiredness (can anyone find me a firm to work in that doesn't mind me having naps through the day at my desk?!)

I'm okay with it all but my wife can't handle it. At least I have a small son to keep me active.

The hardest part is knowing I'll have these pains, regular blood tests, seeing doctors all the time and problems for the rest of my life. That pisses me off. And I want to get back to running companies becasue I'm getting bored!