Mild Lupus

[Blackbutterfly74]

Hello everyone,

I was recently diagnosed with SLE but I was told that I have mild lupus. I haven't seen the rheumatologist since she did the blood work/urine tests. My next appointment is 21 Mar 14. But I try to find information on "mild" lupus but really only come with there is mild, moderate and severe. What is the difference? Does anyone know? Is it the amount of flares, severity of flares, what it will affect in your body, etc? Does it or can it turn into moderate or severe SLE? I am going to ask these questions to the rheumy but I wanted to see if I can get any info before next week Friday.

Thanks and I hope all are feeling well

[lupus-support1 Administrator]

Hi,

I do wish doctors took the time to explain their meaning. This may be partly due to their wanting to reassure the patient, but often ends up confusing the patient or the patient feels the doctor is dismissing their pain and suffering.

I think you are absolutely right to write out before hand all the questions you have and then ask the rheumatologist yourself and make sure s/he explains everything to you.

"Mild lupus" usually refers to SLE that does not involve major organs. Sometimes, this refers to Sjogren's Syndrome, which is also called "mild lupus". However, only your rheumatologist can tell you what this means. The good news is that over the last 20-30 years, there may been major improvements in diagnosis and treatment and there is every good reason to believe that you will be able to lead a full and happy life.

When researching using the internet please make sure you only go to reliable sources of information. You are welcome to look at lupus-support.org.uk - if you register there you will be sent additional information.

You can also speak to others at the LuPUS Message Board where you will find a great deal of information and be able to ask questions there too. I think I have sent you the details but I m happy to re-send them.

Please feel free to contact me at any time here or at: roz [at] [lupus-support] [dot] [org] [dot] [uk]

Be well!

Ros

[Blackbutterfly74]

Thanks so much for the response and the information it was very helpful. I am apart of the other group you sent me the info before. Again i appreciate the response.

[Hidden]

Hello Black Butterfly! I actually had a very similar experience with my rheumatologist... He too called it mild lupus and even sort-of jokingly said I have "boutique lupus." Whatever that means??? So, while unfortunately I don't have any info to bring clarity to help define these labels, I can empathize with you in sharing this experience and the struggle of trying to interpret meaning from these seemingly vague diagnoses given by doctors. Also, I want to thank you for sharing this experience because it enables me to feel less isolated or alone in wrestling with these questions. For me, it is all the unknowns that bring up some of my greatest fears in facing and learning about what it means for me to have lupus. Yet, somehow it's comforting to know that I'm not the only one in this type of situation. Basically, I want to say thanks to you for having the courage to raise this issue and for sharing your experience! Hope your next appointment goes and will offer you some clarification!!!

[Blackbutterfly74 in reply to Hidden]

You are so very welcome i_love_sunsets. I also am glad to know that im not the only one who was told this info either. But the clarification is whats missing and i plan to get as clear as i can when i go in next Friday. I will keep you in my thoughts and prayers and hopefully will be able to update you on what my doctor says. Be blessed and thanks for the response. Take care

[Natura]

I have also been diagnosed recently with mild lupus. I have symptoms, but not as terrible as some on this site. I am awaiting too see the rheumatologist here as well. Not until may 2. Apparently, he is busy...I was getting worried because 2 of my brothers have clotting lupus, and are on a Blood clotting medicine. So, when I was getting bad migraines for several days, it worried me mild or not. Depends on what kind of lupus you have. Good luck with your appt and keep us updated.

[Blackbutterfly74]

Hello Natura my appointment was yesterday and i was somewhat disappointed. The visit was rushed because it was a half day for patients and the rheumy was booked. I wasn't able to just ask all the questions i have and get a clear understanding about mild lupus. If my next appointment goes that way i will probably search for a new rheumy that has patience and the time to give each patient without rushing. I hope your appt goes well in May keep us posted.