View Full Version : My daughter has been diagnosed
08-04-2008, 11:11 AM
My daughter is 18, and was diagnosed with lupus in March of this year. It has taken us three years of recurrent infections, lethargy, chest pains, back and flank pain, and watching her ANA go from 1:80 in 2006 to 1:160 in 2007 and when last checked in February of this year it was 1:1280. RA/CRP labs have been normal to date. Her immunologist has told her that you have to have 4 criteria met to have a true diagnosis. She does exhibit signs of Raynauds, has the elevated ANA, chronic pain, and at our last visit we were told that the DNA tests were conclusive for Lupus. He suggested Plaquenil therapy and she has been taking this for three weeks. Since beginning the medicine, she has had a fine rash on her chest that causes itching when she gets hot or has had a shower. Anyone else experience this? She is also having trouble with mood swings. Despite physical therapy, she continues to have back and flank pain, some days much worse than others. She does not go back to the doctor until October,and we are left with many questions about what to expect in the future. I'm hoping that this connection will provide insight to this disease and help us learn how to support and care for her.
08-04-2008, 11:39 AM
Hi Kryork -
Its good that you are trying to become educated about your daughter's illness - knowledge is power..
First off, its important that you know that this disease affects each one of us differently...some are very sick with weak blood work, some feel good with highly positive blood work. No two lupus patients are the same...so it is truly difficult to predict what your daughters journey will be like. From what you have stated, it does not appear that she yet has 4 of the 11 criteria. The positve ANA is just one, and a pos. Dna could be another. You dont mention swollen joints/painful joints, any skin involvement or any organ system involvement. This does not mean that she does not have lupus, but that it still may be very early in her disease. You are actually very lucky (crazy to say that, I know) that they are treating her without a definate diagnosis. That is not done very often, and that is actually a great start of her treatment. They can now monitor her as well, and monitor any new symptoms that arise. Believe it or not, thousands of lupus/potential lupus patients have to wait YEARS before they are treated at all.
With regards to plaquenil - it is a very good medication, and one of the most used and safest of all the lupus meds. It works very well in managing pain, rashes fatigue and can slow disease process. The only downside is that it can take several months to actually start working. Most say that it takes at the minimum of two months, but most docs say closer to 4 or 5 months. Therefore, your daughter shouldnt be seeing any improvement yet with her pain. Try to give it some time to work (I know that is a hard thing to do - watch your daughter in any kind of pain), and you may also want to start keeping a symptom journal. Have her write down everyday what her symptoms were, if any, what she ate, how much she slept, etc. This will help you monitor what may set off a flare for her, and will also help with your next doctors appt. Also, there are several things we must do for ourselves that keep us healthy as possible and keep us from flares such as:
1) Get the proper amount of rest. If tired, listen to your body!!!
2) Eat a healthy diet - stay away from sugars, salts, and fats - they can all cause problems for those with lupus.
3) Take all meds as prescribed and dont miss doctors appts.
4) Stay out of the sun as much as possible. (Even if she doesnt show signs of rash) UVA/UVB rays can trigger the antibodies in our blood that is responsible for flareups. When your daughter goes out, have her wear sunscreen, hat, glasses, longsleeved clothing, etc.
There are stickys at the top of the forum that have all kinds of helpful hints to stay as healthy as possible.
keep in touch here - like I said, knoweledge is power with this diseasee. This forum is full of accurate info given by the most compassionate people you will find on the internet.
Good luck and keep us posted on how your daughter is doing...Be well
08-04-2008, 09:40 PM
Her mood swings may have a lot to do with the pain that she is experiencing. It is very difficult to live with pain 24/7 and not have it affect us emotionally. Also, some of the side effects of Plaquenil include irritability, nervousness, & emotional changes.
Also, even though Plaquenil works very well on the skin rashes caused by Lupus, the drug can sometimes cause its own skin rash as a side effect. However, this rash is quite different from Lupus skin rash. The fact that the rash is aggravated by body heat or hot water is a complaint that others have had, but they were not necessarily taking Prednisone. Perhaps someone else will stop by to give you more advice on this as I can find nothing that links this to Prednisone.
Lauri has given you excellent information about Plaquenil, so I hope that you do not give up on it before it has a chance to work.
We are here to help you as much as we can, please don't hesitate to come to us with any questions. Someone will always be here to answer!
Peace and Blessings