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kitkat
08-07-2007, 05:08 PM
Hello! I am a newly registered member of the site from Kansas. I lurked for a while before deciding to join.

I am among the frustrated who have not been diagnosed. In January of 2006, I was diagnosed with RA based on my symptoms and on a positive anti-ccp. Nine months later, my rheumy left the state, and I switched doctors.

I have been seeing my new rheumy since last December, and he is convinced I do not have RA since I do not have any signs of bone erosions. After doing some research, I asked if it could possibly be SLE, and in July, I underwent a ANA profile. I am ANA negative but anti-Sm positive. According to the doctor, these results do not indicate lupus. I am not so sure! Everything I have read says that the anti-Sm is very specific to SLE, but then again, the anti-ccp is pretty specific for RA. Recently, he took me off of all medications. Due to all of this, I am very frustrated and confused!!

I have significant joint pain and swelling in my fingers, wrists, ankles, and feet. I often run a low-grade fever and often have sores in my mouth and nose. When I am outside, my face turns bright red, even though my internal temperature is normal. I have some splotchy redness on my right cheek and nose. The worst? I am incredibly exhausted all of the time and recently (last 6 weeks) my hair has been falling out like it never has before.

I am looking forward to getting to know you all, to learning more, and to finally getting a diagnosis.

Saysusie
08-08-2007, 09:00 AM
Hello Kitkat :lol:
Welcome to our family. I am glad that you decided to join us. I do not understand why your doctor would take you off of all medications? Even if you do not have Lupus, it appears that you are suffering from some form of an auto-immune disorder. It appears that it is time for you to take charge of your health care and insist that, until a diagnosis is made, you be treated for your symptoms (especially the pain and inflammation). Unfortunately, there is little that can be done about the hair loss. But, if it is Lupus that is causing the hair loss, it will grow back!
It is possible to have negative ANA and still have Lupus. The condition is called ANA-negative systemic lupus erythematosus. ANAs are negative in approximately 5% of patients with lupus. In these patients, frequently there are other antibody markers of lupus present, such as cardiolipin antibody, anti-smith antibody(Anti-SM), DNA antibodies, and SS-A and SS-B antibodies. Therefore, in these cases, a person can have Lupus with a negative ANA if they are positive for these other antibody markers.
Anti-Sm is an immunoglobulin specific against Sm, a ribonucleoprotein found in the cell nucleus. You are correct in saying that the anti-Smith (Sm) autoantibody response is highly specific for systemic lupus.
Perhaps your rheumatologist is not aware of the Anti-ANA SLE. It might be time for YOU to educate your doctor, insist on further testing and insist that you be treated!
Please let us know how you are doing and how things are going with your new doctor. I wish you the very best!
Peace and Blessings
Saysusie

kitkat
08-08-2007, 10:30 PM
I am frustrated about him dicontinuing my meds, but there is some background history to consider. I was on generic plaquenil for the RA for almost a year. Then methotrexate was added to the regime. I was then taken off the generic plaquenil because I was getting horrible hyperpigmentation on my face. I was on methotrexate alone for about nine months. My new doctor didn't think the MTX was helping, so he switched me to Arava, which didn't help a whole lot either. At my last visit we discussed the lupus possibilities, and he mentioned going on brand name plaquenil because it may not cause the side effects the generic did. He was waiting for my blood results to decide. We decided to go off the pain med. Relafin because it wasn't helping a whole lot more than OTC pain meds. and Aleve is cheaper. So... I was waiting to see what the blood results were. When I got the results, it said,

"You have a slight elevation of Sm antibody, but ANA and PS-DNA are nagative. This doesn't suggest lupus. CCP is still positive. 8 weeks - CBC, ESR, CRP send to my office. Continue the plan of care you are currently on."

My plan of care? My plan of care is nothing!!! I don't even have another scheduled appointment. I called on Friday about my increased hair loss, but I haven't heard back. I have learned over the past two years that I have to take control of my health care, so I am thinking of switching docs... Anyway, that is the long and the short of my medicine saga!

Saysusie
08-09-2007, 09:24 AM
"Continue on you plan of care..." that sounds like a generic statement written on a template letter. In other words, he forgot that you were not taking anything when he wrote that letter! Yes, you should contact him to remind him that you are NOT on a plan of care, your symptoms are worsening and you need a PLAN OF CARE! Insist that he prescribe something for you.
Many people have had adverse reactions to generic plaquenil and have done much better on the brand Plaquenil. Many say that there is no difference in the two, but I've heard enough people talk about their reactions to believe that there is a BIG difference. The brand plaquenil has proven to be quite successful for most people. I do hope that it works for you.

We are in your corner, please keep us posted!
Peace and Blessings
Saysusie

IloveHistory
08-09-2007, 11:03 AM
Hi Kitkat!

Welcome to the Forum! :D I'm really glad that you found us! :D

Please just know that anytime you need advice, support, information or just to vent or chat, we're all here for you!

I'm SO sorry that you are having such a difficult time with your Rheumatologist; it really is ridiculous! :x I do sincerely hope that you get the treatment you NEED to control your symptoms with minimal or no side-effects! Keep us posted!

Please know that you are in my thoughts and prayers...

Feel better soon and God bless!

kitkat
08-09-2007, 01:55 PM
Ok - now I am stunned. The nurse called and said, "The doctor doesn't think your hair loss has anything to do with your condition. He thinks you should see your primary physician for a referral to a dermatologist."

I think I will write him a letter and thank him for his help. :roll:

Saysusie
08-09-2007, 02:43 PM
Yes, do just that and find yourself a rheumy who CARES!! This doctor apparently doesn't care and/or doesn't want to take the time to find out what is really going on with you.

Again...Best of Luck and let us know how it goes!

Peace and Blessings
saysusie

IloveHistory
08-09-2007, 04:29 PM
:shock: That is SHOCKING! :cry:

I agree with Saysusie; you need to find a Rheumatologist who actually has a heart!

I continue to pray for you...

Feel better soon and God bless you!

Maggie17
08-12-2007, 10:50 PM
My ANA was negative when I was tested too. Then positive then negative. 8 years later it is still sometimes positive and sometimes negative. I do have a diagnoses of Lupus and have found that if I wait until I'm "flaring" to have the test it will be positive. Wait until you are having a particularly bad week and then take the test again.

Maggie17