[GALupie]

Hello all,

I a male and I'm 29 and was diagnosed with Lupus about 1yr and 1/2 ago (27 at the time). I am on the "normal meds" Plaquenil, Naproxen, etc. I had had symptoms all thru high school and College, the week I got married (5 years ago, didn't think I was going to be able to attend! :lol:........ I was continually misdiagnosed (Rhumatoid arth., gout, MS, etc) until last year. I would have a crippling flare up about once or twice a year miss work, etc.
Anyhow, I'm glad to be diagnosed and actively fighting my disease. I am staying active, exercising and working out. I'm really surprised, but I actually feel better staying active. I still have the pain, but it seems more manageable. I know I have a long road ahead of me, but I believe 1/2 the battle is attitude, my Dr. agrees.

Just wanted to say that I'm glad to finally find a website that involves Men. At the current time the only other male that I know with Lupus is 35 and has give up on living. Well I have determined not to give up on life. I'm not saying that I won't ever get down and depressed with my sickness, but I had more of those issues while the Dr.'s were jerking me around like a lab rat. I got really low, when I was taking medicines that were making me sicker. Since my diagnosis, it is my mission to live everyday to its fullest, I have too much to live for and endure to let this illness get me down. Me and my wife are expecting our first baby next month and I have determined I'm going to still be around to play with his grandchildren!

Just a question, I know several lupus patients are on steroids can someone explain why their treatment is steroids? I know each and everyone conditions are different, but my Dr. hasn't mentioned steroids, except when I have a flare up and that is usually a shot in the hip. Anyhow, this is still a learning experience for all of us and I'm glad I joined the discussion.
Thanks for having me!
Daniel

 

[cad]

Hi There Daniel,
welcome to the site!!
Its really great that you manage to maintain a really positive attitude. Its just not always possible but we can only try. I find too that trying to stay active does take my mind off of the pain, whereas just sitting with ends up driving me crazy!!

Steroids are used as a way of managing severe inflammation caused by the disease, in whatever form that may be whether its severe flares in the joints or pleuritis, inlfmation in the lungs or anywhere else. For some people there flares become so bad that there really is no other way of coping it with it.
They can also be used on a maintenance basis to control the disease i those who do not respond well to other mediactions as of course not everyone does.

Some people then progress onto additional drugs with the hope of being able to reduce the need for steroids over the long term.

Hope this helps

Take Care

Cassie

 

[LolaLola]

Hello Daniel, Can't wait to hear when the baby comes!
The reason I am on steroids is because despite all the usual cocktail I just do not have good disease control and can get bad brain symptoms. I get the dose as low as I can, but am currently not doing too well.
Welcome to you.
x Lola

 

[Maia]

I have been on prednisone when the usual maintenance drugs for me do not prevent a severe flare up; when the joint pain gets too bad for me to do daily living things or I just can't take it any more! I've also taken it for pleuritis attacks, it can really help with those symptoms quickly. The longest I've had to take it for is 5-6 months. I try to get off it as quickly as possible to avoid the negative side effects.

Welcome to the site and I especially welcome your wonderful attitude towards living with lupus. I am much like you in that I find that a good walk every day seems to be quite beneficial to me, I view it as nearly another prescription by the doctor that has to be filled daily. There are days/weeks when it's not possible, but I love getting that exercise and feel like my body still works for me in that way. It does seem to lessen the pain most of the time but sometimes it can increase the pain too. But overall, it's worth it for the benefits of hopefully helping me to live a long life to be there for my daughter too decades from now with a little luck and hard work too.

PS Congrats on the baby! You will learn just how much you can love somebody after
you set eyes on that baby and watch them grow - the love grows more every day I swear!

 

[cad]

Hi Daniel,
I am so sorry that I forgot to sat congratulations on the baby. I was trybig to finish my post as my little man was pulling at my leg.
Oh I go all gooey when it comes to babiesm thats how come I've ended up havig 5 of them!!!

Oh good luck to both of you, it really will be such a wonderful journey.

Take Care

Cassie