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Untitled Comment
Lene Andersen
Monday, June 29, 2009 at 07:24 PMre: Untitled Comment
ems_mom
Monday, June 29, 2009 at 07:43 PMThank you! The problem we have is that we just switched doctors after four years with the number 1 rheumatoligist in St. Louis because he didn't take us serious and there are no more pediatric rheums covered by our insurance in the area. I like this doctor and she takes us serious but seems conservative. She really spends time with us. In April she upped Emily's meds because the mtx wasn't doing what she wanted, so I guess we just have to go the next step. There is no joint damage yet but she's really been having some seriously bad days this year...more than ever before. I really worry about the being tired and feeling so bad all the time.
re: re: Untitled Comment
Lene Andersen
Tuesday, June 30, 2009 at 12:04 PMWhen you have a chronic illness it's really important to become a strong advocate for yourself. When you are the parent of a child with a chronic illness, you need to become the advocate, tap into your mama lion and go to town on the doctor. Politely, of course. My last post was about self advocacy and you might find that helpful.
A relationship with a doctor is much like any other relationship - it needs some work until you find the groove. If you do like this doctor, it's definitely worth it to keep working at the relationship until you get to know each other better. It's reasonable of you to talk to her about how crappy your daughter is feeling - although you can expect some side effects from medications (for more managing side effects, click here), they should be manageable and should not severely impact the quality of life. The whole point of medication is to increase the quality of life and if your daughter is not able to participate in life like she should be, then it's time to take action. The better you communicate your daughter's reality under the current meds, the better your doctor will be able to understand the situation and act accordingly.
Good luck! Please let us know how things go?
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i can understand
corinne
Tuesday, June 30, 2009 at 09:07 PMi'm only 18, so im not much older than your daughter, but i know that when i am in alot of pain... i feel low emotionally and i just lay around. I dont think your daughter is just being a teen... i think it is the arthritis!
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maybe check out Enbrel for PA
Ellen
Thursday, July 02, 2009 at 09:47 AMI take Enbrel for RA (and I'm 58) but I have a friend whose daughter has PA. She is on Enbrel and it seems to do well for her. Enbrel is approved for psoriatic arthritis you can look it up, and/or call Enliven Services, the drug company's support system for people on Enbrel, get questions answered. They are great.
You might want to look into to - good luck!
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I've had RA since I was four and although we didn't have any treatment back when I was your daughter's age, I do have some suggestions. First, go back to the rheumatologist and talk about other treatment options. Methotrexate usually kicks in within six weeks or so and if it hasn't worked now, it's not going to. Your options may include increasing the dose, supplementing with another DMARD (disease modifying antirheumatic drug) or switching to another medication altogether. It's essential that your daughter's disease is suppressed as quickly as possible to protect her joints. If her doctor is not taking this as seriously as you would like, find another doctor.