View Full Version : still don't know

07-15-2008, 07:34 PM
I went back today to get the results of all my bloodwork. She said that I have a positive ANA but that the other tests for lupus came back neg. I also had a positive ANA 6 yrs ago when I saw her. She says that because of all my symptoms and the positive ANA, she wants me to go ahead and take the plaquenil. I took it for 3 weeks , had terrible headaches so I quit until I went to see her. I told her that I had stopped taking it a week ago but I am still having headaches. I am going to try it again and I am going to try my best to stay on it long enough to see if it helps.
I know that I am sick, I have nearly every symptom I have seen listed here but at this point I still don't know if I have lupus or not. The doctor sort of left me hanging. I am also having a problem with my skin. I have blister like places that come up, then they seem to dry up and get crusty then when they go away they leave a scar. the scars then turn dark. (I am very fair skinned). These places only come up on my arms, chest and face (where the sun hits) the doctor said that I need to get my dermatologist to biopsy it to see if it is lupus. I always feel much worse in the summertime.

07-15-2008, 08:21 PM
DonnaK, I have the same type of blisters as you. You described it as if I was the one writing. My doctor has given me: Hydrocortisone Valerate USP, 0.2% I use it two or three times a day and it keeps them at bay. I use a facal scrub (Walmart-Equate Apriocot Scrub) that controls oil. It has helped greatly.


07-16-2008, 05:30 AM
Hi Donna -
I am very happy the doc decided to put you on Plaquenil, even though she feels unsure if you have lupus. I am no doctor, but it sure sounds as if you do...particularly with the skin problems. Rashes/skin are a hallmark sign of lupus. Also, the "other" tests for lupus are just guideline tests...there is no ONE test for lupus - its a differential diagnosis.
THere are 11 criteria set forth by the AMA for lupus. If a patient has 4 of the 11, they can be Dxd with lupus. ANA is one of the criteria. The other tests are part of other criteria. There are alot of other things that, collectively, can point to lupus. I am one of the few that have been Dxd WITHOUT a positive ANA, or anti-DNA. however, I have most every other symptom, so I am Thank You Jesus - being treated. I felt better immediately. Please try to take the plaqyuenil....it really does work, and is one of the safer medicaitons out there for lupus.
Glad you found your way here - this site is a Godsend for us "newcomers". I have learned SO MUCH here!
Take care,

07-16-2008, 06:09 PM
Thanks for your replys.. Sometimes I get so depressed because I am so tired of feeling bad. I have so many things I want to do but I just don't have the energy to do them. I try not to complain too much because I know that people get tired of hearing that you feel bad "AGAIN"... especially when you don't actually look sick.. I am glad that I found this website and can see that there are a lot of people out there with my symptoms.. There have been times that I wonder if it is in my head..
I want so much to be able to do things with my Grandchildren and really enjoy it instead of trying to pretend I do. It takes so much out of me to do anything outside in the summertime and heat. My mind wants to do a lot, but my body just won't co-operate.. Hopefully the plaquenil will help before too awful long.
Can anyone tell me how long they were on it before they started taking it twice a day ? My dose is 200 mg once or twice a day. I have not tried two pills yet. I am afraid it will upset my stomach.. Should I take it in the morning or afternoon ? all advise is appreciated...Thanks

07-16-2008, 06:22 PM
Donna -
In my lifetime, I have never experienced anything as horrible as being sick and being undiagnosed. Being sick at all is BAD enough...but to have people think you are fine, no matter how many times and or ways you tell them you are not.
I was put on prednisone WITH the plaquenil, as the prednisone works right away. The plaquenil is different for everyone, but can take up to a few months to start working.
I was started on 200 once a day, but was increased to twice a day a month or less later. I did not notice a difference at all, I just kept feeling good. Maybe you could ask your doc to try you on prednisone for a couple weeks to give you a jump start on your symptoms. Prednisone is lousy, but a couple of weeks or so isnt too bad. It has really worked wonders for me.
I was literally debilitated right before I went on it....severe pain, severe fatigue, swelling, etc. I was in really bad shape. Within a couple of days of being on prednisone I was up and about, very little pain, no swelling and the difference in the fatigue was remarkable. I didnt even need a nap, which is unheard of for me!
I hope your symptoms dissipate soon...my doctor told me that Plaquenil doesnt work very well at only 200 mg a day. Im sure other docs feel differently, but thats what he said. Two times a day is still very safe. I may have had a day or two with some stomach pain, but nothing notable at all for me. Any side effects should subside pretty quickly as well, but, as we know with lupus, everyone is different.
Please feel free to keep coming here to vent your frustrations...we all understand completely!! Welcome to the site and warm thoughts coming your way...I hope you fell better soon!
Love Lauri