New to group

Welcome Greetings and Introductions
1

Hello all,

I decided to join LWL after spending a 4 days doing nothing except laying down and watching movies and reading while in pain. I have had the butterfly rash a few years back and will never forget how very pronounced it was, it looked like I had someone paint it on my face! That night I Googled "Racoon mask - rash" and stumbled on the butterfly rash. I remember emailing a friend of mine and telling him how weird it looked. I looked up that old email and got the exact date for my records recently.

Five days ago I was at work barely functioning...I went home, fell asleep and woke up to go to work again and I can't do it. Getting out of bed was a process...I felt like I have the flu. Pain is completely unmanageable. Ive never had this intense pain, hips, shins, knees, feetI took 4 days to rest and saw my doctor on the 5th. I've never shared with any doctor about my butterfly rash but having a rheumatoid arthritis, and all pain, I decided to spill the beans and it felt good. I was given a prescription for plaquenil sulfate and pain medicine. I noticed that the plaquenil sulfate made me absolutely worthless and foggy....Does this happen to anyone else?

I have been to the emergency room too many times this year for gout flares. Gout is very painful...So painful that you don't want even a sheet to touch your toe where it typically flares. So I know that I have more than an ordinary amount of inflammation in my body.

Other than what I have shared, I realize that there is a lot of studying to do. I have no idea how severe or mild my case is. Is it going to attack my heart or stick to my joints? Is this why I have dermatitis that I have to use medication for all the time? One thing I know is that I do not want to live a "Sick person's lifestyle". I believe that attitude and frame of mind have more of an influence than most realize. I also believe in many forms of healing.

Thanks for reading, I look forward to hearing your stories and how to find the best doctor for Lupus.

Scott

2

Scott, I wonder if what you are describing is all "lupus" There is a co-occurring condition or separately occurring condition that causes the skin issues and even the "gout" called Sarcoid Arthritis or sarcoiditis. The labs are the same and has a high occurrence in men. That's not to say the lupus DX is wrong. Talk to your docs about Colchicine. It stops the gout dead, but also treats the rashes and is a great anti-inflammatory. Its fast acting. Of course it may be the dermitis med you are taking and I could look foolish for over selling it based on my experience (which is just short of a miracle) I don't have Lupus, but danced with the diagnoses for a while.

3

Hello TJ,

Thanks for being so observant...You do have a valid query. No doctor has told me that my gout is associated with lupus. I have had gouty arthritis since my 30's. This year it has been particularly active; I've had 6 or more flares. I have had the rheumatoid arthritis diagnosis for a few years, however I've also had the classic butterfly rash which I believe is only associated with lupus. It was so pronounced one time it looked like I was wearing a mask - the line of the rash was profound.

I have tried Colchicine and I could not stand it; it seemed to bring on very strange side affects associated with the gout. It would change sides from one foot to another within hours - it seemed to make it move. I don't remember the other side affects but I was miserable on it. I'm wondering if I should try it again, it's been years since I took it.

Look forward to future communication with you,

Scott

4

Here is a couple of articles worth reading:

http://sarcoidosisfoundation.org/2009/04/what-other-diseases-masquerade-as-rheumatoid-arthritis-part-1-the-non-infectious-group/

http://www.apiindia.org/pdf/medicine_update_2011/53_lupus_mimickers.pdf

Docs need to treat what they see, not the tests.....

5

I hope that you feel better soon

6

Thanks TJ, this is good information, I really appreciate it.

TJ1 said:

Here is a couple of articles worth reading:

http://sarcoidosisfoundation.org/2009/04/what-other-diseases-masque...

http://www.apiindia.org/pdf/medicine_update_2011/53_lupus_mimickers...

Docs need to treat what they see, not the tests.....

7

Thank you, I've taken time off for a few days and I do.

Beautiful Survivor said:

I hope that you feel better soon