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Lori
02-04-2010, 07:07 AM
Good morning everyone. My 17 year old daughter, who has hardly been sick a day in her life and is ready to begin college in the fall on a softball scholarship (pitcher) was diagnosed with lupus last week. We are still reeling from this and trying to learn all we can. She has been to a Dr and is on predisone and has begun taking Plaquenil.

My first question is, we've been told that the hope is that she response well to the drugs and goes about her life. Is there any chance at all that it will be this simple? Whenever I look at information, it scares me.

Secondly, She was told yesterday by someone she knows who has Lupus that the doctor we are seeing is not a licensed rhuematologist. I've looked online and it looks like he is an internist that specializes in rheumatology. He seemed very knowledgeable and was very helpful. How important is it that she see someone who is licensed in rheumatology?

Thank you for your help.

magistramarla
02-04-2010, 06:27 PM
Welcome to WHL, Lori
You've come to the right place to find some understanding and reassurance.
First, everyone responds differently to AI issues and the meds that we take. Hopefully, your daughter will keep right on with her life, and just have to remember to take her meds every day. SaySusie is our expert on all of this, and I'm sure that she will come along and answer your questions.
Second, if you read through the threads, you will find that people get diagnosed by lots of different kinds of docs - PCPs, rheumys, dermatologists, even dentists. I'm assuming that your daughter had blood tests that clued the doc in, right? If you're not sure about the diagnosis, get a second or a third opinion.
Feel free to read through the threads here and learn all that you can. Keep coming back to let us know how she's doing and we'll all be glad to give her any advice that we can. We have several young ladies on this forum that she might like to chat with.
I'm a retired teacher, so wish her lots of luck in college from me!
Hugs,
Marla

mountaindreamer
02-04-2010, 08:48 PM
hi lori,

i know you are very frightened by your daughter's diagnosis. Facing medical issues with your children is a mom's number 1 nightmare. Your daughter is lucky that she has you on her team.

I would strongly recommend that you find a licensed rheumatologist. There are several medications that can help with lupus symptoms, but they are also very serious medications. Plaquenil is the standard medication for lupus....it takes about 5 months to work at its maximum, and early on there are sometimes stomach issues that are painful, but usually go away after a few weeks.

Steroids - Prednisone is also commonly used. However, there is a correct dosage that should be administered and supervised. Also, tappering often requires a lot of modifications in the dosage. Prednisone helps with many symptoms, but weight gain is a huge side effect. Some people gain 30 pounds in just a matter of weeks. Please make sure that your daughter understands this possibility, so that she is not totally surprised if she gains weight. Also, the "moon face" is common, but will go down once she is off of the prednisone.

Like i said, there are other medications, and each of them have their own side effects and concerns...A qualified rheumatologist can help you make treatment decisions.

Does your daughter have any of the symptoms of lupus? Like Marla said, auto immune diseases affect people very differently....some people enjoy extended times of remission, some people get a lot of relief from the medications, some people continue at the same level without increases in symptoms, and some people face serious changes in their lives from their disease. I hope your daughter is able to continue through many years of "normal life"...

I hope you will stay in touch with us and keep us posted on her progress. There are a lot of people here who have tried different treatments and have a lot of information to share with others. Also, we do have a "teen" forum where the young people share their experiences. Your daughter might want to check it out.

Best of luck to both of you. Hooray for your daughter's future college and softball years...I know she will be a remarkable pitcher and student.

Lori
02-05-2010, 06:05 AM
Thank you for your responses. She has had the tests. She also has slightly elevated protein in her urine. We are told she has a textbook case. It all came on rather suddenly, not like some of the cases I've read where patients struggle for years to finally get a diagnosis. She has the butterfly rash on her face, hands, in her ears and some on her scalp, her hands, wrist, legs and feet are sore at various times. So I'm comfortable that the diagnosis is correct. I have no problem with the internest she is seeing, although we've only been once and go back week after next. He seems very knowledgable and our family doctor is comfortable with him. He was very informative and told us that he was going to stay on top of it and we were going to keep one step ahead of it. Apparently he has done some teaching to other doctors. If we switch, that means driveing an hour since there's no one else in our town. It sounds like the people who werent happy had more complicated cases and felt he wasn't sympathetic enough.

SandyR
02-06-2010, 12:15 AM
hi! Welcome to WHL! I applaud you for being so quick to educate yourself on your daughters conditon and for being a good medical advocate for her. She will need you understanding and support the more she experiences this horrible disease. To answer your question, as Mountaindreamer said, all sorts of drs can diagnosis Lupus. I think the issue is comfort. If you like the doctor and your daughter likes the doctor she is currently seeing and if you are confident in their knowledge and skills as a doctor, then I see no reason to change. A lot of us have changed doctors and ended up at square one where the new doctor doesn't believe the old doctor's diagnosis and stops us from taking the meds and treatments we were previously perscribed. It becomes a tug of war with the doctors over a diagnosis and our health is the rope. You said you believe this doctor to be correct and it certainly sounds like she has Lupus and you said you are already trusting in this doctor so I don't really see why you would want to change.
Sandy

laurid8967
02-06-2010, 06:59 AM
Hi and welcome -
You have truly found the BEST site available on the web. The ppl here are VERY informative and compassionate. I am sorry to hear about your daughter, but MANY people have lupus and do not suffer the more serious symptoms. As previously said, scan thru all the posts and you will learn so much.
As for the doctor isssue - there are not many AT ALL licensed rheumatologist in the country (I think my last read said 6000). An internist who specializes in rheumatology is more than qualified to take care of your daughter. However, if you feel you want a second opinion, that is your right of course.
My experience includes visits with some of the most noted rheumatologist in the country (I live in Boston where all docs from Harvard, Tufts, BU, BC, etc) train at my local hospitals. Though my current rheumie from Brigham and Womens is GREAT(he teaches at Harvard), my main care is done by my little 'ol PCP - who is quite brilliant, young and open to new treatments and ideas, and refers me OUT when I have a special need (I have a sepearte kidney doc, nephrologist and neurologist). I dont disagree with Mountaindreamer in that you certainly wnat someone who KNOWS about this disease. She is so riight about the meds and the fact that this is a VERY complex disease and VERY individualized. But there are alot of docs who are very capable who are not rheumatologists.
Maybe it depends on where you live? If a more rural area, you may want to go to the nearest university hospital to have her checked out? But someone mentioned comfort and it is SO IMPORTANT with this disease...you NEED someone who will actually listen to your concerns, not blow you off, etc.
I also must add this: Though I know this must be so devastating for you and your family - no one wants to be sick! - however, there are SO MANY ppl out there who are sick and CANNOT get a Dx and, thus, treatment. THis may sound crazy to you right now, but as you read and learn more about this disease - you will see that there is a positive aspect in the fact that a doctor is paying attention and treating her. The earlier the treatment the better.
Hang in there, get informed...your daugher is lucky to have you for a Mom.
God bless,
Lauri