[sharon1953]

Iposted this under a different place but I think this is where it belongs.
Where to start I will try to make this short.
Daughter has all systoms of lupus bad fatigue,joints red swell painfull,knees bad hands and fingers sometimes hurts to breath,headachs,hair loss,feet painfull,the hole nine yards her reg. doctor did some test ana was high,she feels it is lupus been going thu this for couple of years but had no insurance.Made appointment with Rhumy at Vanderbulit in Nashville Tn. waited 5 mos.Today he said he thinks it is fibro. not lupus(I have had fibro for 18 years)he did do a bunch of test and took some xrays of her hands and gave her plaquil and said see you in 6 mos.She has 6 yr. old son and works but can not stay awake once she is home this is on going.She gets lortab 5 from her GP but it doesn't help that much.I say it's lupus not fibro because I have fibro and what I see with her is different.A bomb would not wake her .I want hr to get second opion.What do you think?Sick of waiting and watching,help as bes I can with my grandson.They live alone.

 

[Joandublin]

Hi Sharon

Yes you had posted this in Introduce Yourself but dont worry - I removed the other one so that there would be no confusion. It gets messy having posts repeated in different forums as members dont know which one to answer.

I am really sorry to hear how your daughter is suffering at the moment. The fact that her Rheumatologist has put her on Plaquenil says to me that he believes it is more than fibro going on, despite what he says. Plaquenil is a disease modifying drug used in various autoimmune disease, of which Lupus is one. If she was diagnosed with Lupus for example this is the first drug she would be put on.

It sounds to me like the Rheumy is not communicating properly to you or your daughter. Its most likely that he doesnt know exactly what is going on yet and while he may suspect Lupus there can be other diseases which have a raised ANA and show some of your daughters symptoms. Trying to pin down which one can be a bit of detective work. Many specialists wont actually diagnose Lupus until there is clear specific blood work evidence relating to SLE like anti dsDNA antibodies. Some people will have a diagnosis of Undifferentiated Connective Tissue Disease which means that there is evidence of a connective tissue disease (like Lupus or some other) but not specific evidence to pin down which one.

My own specialist did much the same as your daughters one. She told me I had fibro and said see you in six months. However the blood tests she ran on that day saw her bringing me back earlier. My starting treatment was Plaquenil even before I was diagnosed with SLE several months later.

It is very frustrating for you and your daughter. She doesnt sound well at all. Did you ask her Rheumy what she should do for symptom relief while she is waiting on the Plaquenil to take effect? This can take anything from 3-6 months on average so she may need something else like an anti inflammatory to help with the joint pain and swelling.

If you arent happy with her current Rheumy then by all means seek a second opinion. I would wait though to get a copy of her latest blood results as they could be important in any further referral. She may be in a flare right now and if this is the case her bloods may show up something which warrants further attention.

I hope she starts to feel better soon. Sometimes a short course of steroids is prescribed while the patient is waiting on the Plaquenil to take effect. It might be worth discussing this with the Rheumy as she seems to be having a hard time trying to work and look after her little one.

Best of luck and let us know if we can help any more

Luv n stuff
Joan:rose:

 

[sharon1953]

thankyou

Thankyou Joan for your quick response.I did not go with her I had to babysit my grandson we live 50 miles from the doctor.He told her he did not think it was lupus but fibro.I don't understand why he didn't give her some predisone to help the pain temp. untill allthe blood test comes back.I didn't like see me in 6 mos. but she said he told her f the other test shows anything they will call.I guess with me having fibro for 18 years and looking at cking the intetnet at lupus sites she sounds more like lupus.She did forget to tell him about her chest pain when breathing that she goes thu sometimes it will last a week and go away.I guess waiting so long for a doctor it just upsets me when they throw fibro out first thing.Thanks for listening.

 

[LolaLola]

Hello Sharon,
I have nothing to suggest, just want you to know I am concerned for you, your Daughter and your Grandson.
x Lola