View Full Version : New to site, not to lupus
08-09-2009, 10:12 AM
Hi, my name is Colleen. My story goes like this; 28 years ago I had a few lesions on my face that would not heal, and I became extremely fatigued when working outdoors in the summer. Long story short, I had a biopsy performed by a dermatologist who confirmed I had Discoid Lupus.
I was then referred to a rheumatologist, who I continued to see for the next 7 years or so. He decided that I could just go back to seeing the dermatologist since my lupus was pretty much skin related. Now, somewhere along the line, my disease was changed to Subacute Cutaneous Lupus, and about 10 years ago, I got the fibromyalgia diagnosis.
Everything had been pretty well under control up until about 6 months ago. I started feeling extremely fatigued, my knees would get aching so bad they'd wake me up at night, etc.
I finally decided that I should maybe go back to the doctor's to have everything checked out. My family doctor referred me to a rheumatologist and ordered a bunch of tests to be done. It seems that I have indeed developed SLE, something that I thought wasn't supposed to happen. I'm not dealing with it very well, as I used to be very physically active, and now cannot participate in various activities, sports like I used to.
Anyway, I don't go back to see the rheumatologist until the end of October, but did go to my family doctor just the other day to see if he could help me in the meantime. After placing a call to my rheum., he put me on plaquenil, something I haven't had to take for 20 years. I'm hoping that will do the trick, but know it takes time to work.
In closing, I guess I'm just looking for support from all of you since you understand better than anyone I know. I don't like talking about it to my friends or family anymore...they don't seem to want to hear it.
Thank you for reading my story,
08-09-2009, 10:17 AM
Welcome and yes here you will get all the support from all of us.I understand so much about friends n family,so feel free to ask us anything.What one doesnt know,you will see another coming here to answer the question.Just hang in there and know we care.
love n gentle hugs
08-09-2009, 03:13 PM
Welcome to our family. I am sorry to hear that your DLE has developed into SLE. Studies have shown that at least 10% of patients with classic DLE will subsequently develop SLE. The studies tried to identify the clinical features that led to this progression. Part of what they found was that DLE patients with generalized lesions above & below the neck were more prone to developing SLE because they had a higher incidence of abnormal immunology. Also, DLE patients who suffered from alopecia (hair loss), lymphadenopathy, vasculitis, Raynaud's, and/or nailfold telanglectasia (small, dilated blood vessels in the skin at the margin of the finger nails; found in: dermatomyositis, SLE, scleroderma).
Also, DLE patients whose lab results show anemia, or leukopenia (a decrease in the number of white blood cells (leukocytes) found in the blood), or a false positive for syphallis, a high DNA, a high ESR, or positive anti-DNA were more likely to develop SLE.
Plaquenil has great success with DLE patients and can also help to alleviate some of the symptoms of SLE (like fatigue and joint pain). However, as you mentioned, Plaquenil takes a while before its full benefits are felt. Has you doctor recommended any NSAIDs in the meantime?
We are here to answer your questions, help you to understand this disease and to provide you with support and information. I'm glad that you found us!
Peace and Blessings
08-10-2009, 03:48 AM
Thank you for your replies. It's really great to have someone to talk to who understands. My family is really great, but I don't want to bother them with my problems. They deal with enough of their own.
My doctor recommended that I take tylenol for my aches and pains as I don't have swelling in my joints, just pain. He also prescribed some cortisone cream for my rash, which does seem to be helping.
I've also been having extreme discomfort under my right rib cage for some time now, and am going for an ultrasound on my abdomen on September 3. Hopefully we will get to the bottom of that too. It's hard to sit for any length of time because of this. Anyone else experience this?
Saysusie, is it possible that I've done something to make myself worse over the years? I was told that if it was going to get more serious, there was nothing I could do, but I still wonder.
Again, thank you for the warm welcome,
08-10-2009, 10:26 AM
As you have seen, you are welcomed here with open cyber hugs. I am sorry you have moved on to SLE. Hopefully the plaquenil will begin to work for you and will provide you with some relief from the fatigue and joint pain.
There is so much support here. Others will be along soon to offer their welcome.
08-10-2009, 12:34 PM
welcome to our world-wide family.....you will find a wealth of knowledge and compassion among our members. I am so sorry that you are dealing with new diagnosis etc....such a frustrating time.
I too have fibromyalgia, which in itself can be a full-time struggle.
We are always here, and will be ready to answer questions, boost your spirits, or just hold your hand....just let us know.
in reference to your pain under your rib cage, yes, i have had problems with my left side....went through all sorts of tests and specialists and was ultimately told "it must be your lupus".....i hope they can find what is causing your pain, but please be prepared to hear those dreaded words that it is "just your lupus"....
08-10-2009, 01:11 PM
I hear you about that dreaded phrase...have been hearing it for the past 28 years myself. It's very frustrating to be told that time after time, especially when my diagnosis up until now has been limited mainly to the skin! I guess it's easier to blame it on an already existing condition that to run any more tests to find out the real cause.
I shouldn't complain though; my current doctors seem to be very understanding and are trying to figure out why I am having these problems.
Thank you for the info, and thank you too Jana for the warm welcome.
08-10-2009, 05:08 PM
Welcome to the site colleen!
Sorry to hear about family and friends and I understand but you have just gained a host of cyber friends/family that will listen and chime in on whatever you need to vent or talk about.
I send you love and I wish you health and remission!
08-10-2009, 06:04 PM
Welcome! I empathize with your not being able to discuss with your family and friends. This site is full of people who have become friends and a second family of sorts to me. I think you'll really like it here.
08-11-2009, 03:22 AM
Hi Ms Hutch,
I'm fairly new to this "family" myself. I too have fibro and they can't make up their mind if I have SLE. But I do have DLE.
Welcome and you will find that you love this place. It's like a haven. Even if you need to vent or scream, we will all undersand.