View Full Version : Tumid Lupus?

06-07-2011, 06:12 PM
Hello Everyone, First of all I am a 42 year old male, about 4 months ago I was diagnosed with tumid lupus, I developed a rash on my face that would not go away and lasted for months,I went to a derm and she did a biopsy and told me it was tumid lupus and to stay out of the sun, I had heard of lupus but knew nothing about it, when I got home i went online to see what I could find. I was told that tumid lupus (TLE) only affected the skin and as long as i stayed out of the sun I would be ok, but as i read blogs and read the symptoms I think I have SLE, as i read the symptoms alot of things started to make sense, when i was young I was plagued with constant canker sores, then when I was in my teens when ever i was in the sun i would become tired, and my knees started to hurt, I have always suffered from dry mouth, it would get so bad that it would make me gag, I would get fevers for no reason, now all my joints ache, I get this rash that lasts more months, i have severe fatigue, I have memory problems and have a hard time concentrating, I have alot of mucus buildup in my throat, I have gerd and I don't have a hernia, In sept I had a heart attack, and had 3 stents put in, I had 4 blocked arteries, my doctor told me that was strange for a man my age, my ana came back normal, just seen a rhem for the first time and she ordered more blood tests and x-rays of my joints still waiting for the results, she also told me to get a eye exam? I think I have sle but i'm not sure

06-07-2011, 07:00 PM
Hi GKF. Let me first welcome you to the WHL family! Your story sounds like so many others so please know that we understand! Often times the doctors don't want to diagnose SLE so they ignore us or start with Tumid Lupus, Discoid Lupus, SCLE Lupus anything but SLE. While there are many people that luckily only have the types of Lupus that affects the skin (not that it isn't bad to have) many others get that diagnoses just to find that so many SLE symptoms fit them as well. As bad as it is to think that you have a Chronic illness it is, in some ways, a relief to know that you are not crazy!!

My first suggestion is that you begin to keep very good notes on how you are feeling. I wrote a one page synopsis that I gave to the doctor when I went. It gave an overview of my symptoms. Like you the list begins with all these things you think of as getting older. GERD, High Blood Pressure etc etc. Just know that from this point forward you are not alone. We are here with you as you go down the path of figuring out what is wrong and hopefully you get an answer quickly. There are some wonderful men on this forum so you are not surrounded by only females!!

Once again, welcome to our family. We are really glad to have you!

06-07-2011, 07:46 PM
Welcome. It would be nice if you didn't need a place like this, but since you do, I am very glad you found us. There are so many people here who can give you information and support - it's kind of like Cheers!

06-07-2011, 07:52 PM
Welcome. It would be nice if you didn't need a place like this, but since you do, I am very glad you found us. There are so many people here who can give you information and support - it's kind of like Cheers!

LOL@ kinda like Cheers! I love it!!! Pull up a bar stool Norm!!

06-07-2011, 09:29 PM
Great group of people with a wealth of info. You've found a fab group of lupies that will help you down this road.

Welcome aboard!

06-07-2011, 09:59 PM
, she also told me to get a eye exam? I think I have sle but i'm not sure
Welcome to WHL! It is a great group of friends.
I know exactly why your doc wants you to get an eye exam. You mentioned dry mouth. Dry mouth and dry eyes are symptoms of Sjogren's which is another AI disease that many of us here have. She probably wants the opthamologist to do a Schirmer's test to determine how dry your eyes are. Find one who does a dry eye clinic if you can - I love mine.
While you are there, tell him that you are being checked for AI disease. If the rheumy puts you on Plaquenil, you will need a check-up on the retinas every six months. Rarely, it can cause problems. If I were you, I'd ask for the baseline now.
Good Luck.

06-07-2011, 11:47 PM
i am glad you have started seeking medical help.
please read mari's advice again.

this advice has helped a lot of us looking for diagnosis.

06-08-2011, 03:06 AM
Hi GKF! Welcome to a great group of caring people. You came on the chat when I was ready for bed last night. So glad you found WHL. I am new here too and so very relieved to finally find folks that know my suffering. It's hard to have a truck load of symptoms and have them negated for years. All are validated on this forum! I have SLE and as of late fibromialgia symptoms. The fatigue seems to be most of the time now. I had to document everything and take pics on this long journey. It finally paid off. I also had to switch rheumys several times. I am not a doc switcher but I had to search hard for one who "got it". Never give up! I have SLE but I do my best not to let it stop me from living my life to it's fullest! Bless you on your journey.

06-08-2011, 05:20 AM
Hi GKF109,

Welcome to our lovely family WHL and there's so many threads to venture through to help more with what your suffering.

Your symptoms do sound more like SLE which i have and a good many member's but hopefully having bloods done now and x-rays which i had will show more but Lupus does fluctuate the bloods and if any of your tests come back negative that could be actually positive, it's the running of bloods with the condition that takes alot of time.

They found what i had from the start but it took 6mths for the anaemia to show itself.

It will be nice getting to know you mate.

Terri x

06-08-2011, 08:37 AM
Thanks to all for all the kind words and advice, although I have had symptoms for about 35 years or so and no doctor able to figure it out until now,(and they still can't tell me for sure yet...) both of the ana tests came bag negative, I'm almost positive that my lupus is systemic and not skin lupus, I have all the symptoms of SLE and as I get older they are getting much worse. For me the rash that I got about a year ago was the giveaway,and now I'm just trying to get as much info as possible,just started going to a rhem and she did more bloodwork and x-rays waiting for results, she did tell me that I had arthritis in my knees and hands and i should get PT, I have been this way for so long I can't remember if I have ever really felt normal in my life! but maybe this doc will finally be the one that figures it out, and I look forward to taking my journey here with all you kind people, because you are the only ones who truly understand!

06-08-2011, 08:49 AM
Well gfk,

I do know where your coming from i've had ailments for years which Lupus can give you seizures, spondalitis which i was born with, dvt, and many more when i was diagnosed 3yrs ago and the rheumo looked at my history in 25yrs plus symptoms from a child and when the bloods came in he told me i was born with it and it came from my parent's.
In last 2yrs alone it's been a nightmare for me also to live with and the pain and recentley they've found a tumour on my liver which they reckon is to do with the sle.

It's so lovely to have you with us and if your ever down vent away because Lupus does thrieve on depression and it makes your symptoms feel worser than they actually are.