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Posted 2/25/2009 4:39 AM (GMT 0)

Hi, all. I am new to the forums. My name is Stacy and I'm a 36-year-old wife/mother who was  diagnosed with lupus in the beginning of 2008. The rheumatologist tested my ana, which was positive, 1:160, double-stranded dna, which was positive, rheumatoid factor (positive) complement (positive) and high sed-rate/crp. My symptoms were and still are: muscle/joint pain, fatigue, sun senstitivity, rashes, headaches, etc. My sister died from complications of lupus 7 years ago. Anyone, he started me on plaquenil, which I took for 2 months, then went to a neurologist for headaches and was told that my ana was negative and my sed rate was sky high, 100. She said she doubted I had lupus because I was black (I thought it was more prevalent in blacks).

In Nov of last year, I went to see a rheumatologist at U of M and she said she didn' t see any signs (according to tests she took) that I had lupus but that I had sed-rate and crp levels through the roof and extremely elevated muscle enzymes. She wanted to do a muscle biopsy, but I was in the process of moving out of state and was unable to have it done.

I sent all my records to a doctor in SC who is a "master diagnostician" a few weeks ago. She told me that I definitely have lupus. I don't know who to believe and I'm tired of going to doctors who scare the crap out of you if it's for nothing.

My question to the group is can I have lupus yet my blood tests change to negative a few months later? What should I do now? The doctor in SC says she can't help me but referred me to a nutritionist who she swears can cure my lupus? Please advise.

Thanks, confused

Stacy in NC 

Posted 2/25/2009 11:03 AM (GMT 0)
Hi Stacy, I am so sorry about your sister. But I just have to say this. What the heck is wrong with the doctors in NC? Because your black? I have heard some stupid coments but that beats them all. I don't know the statistics but I'm sure it's very possible. Besides that's what your sister had. Many more women have it then men but there are men in this group. As for your ana oh absolutely your ANA can change from - to + and back again. In fact the fact that you had been on plaquenil may have caused the change. Plaquenil is used to keep Lupus in check. The key is getting the right dr. I'm on my 4th rheumy. It's not unusual. I have been coming here for a couple of years and still don't know if I have it for sure. Sometimes it takes years. Usually drs. treat system more then the disease. If you waited for them to DX you to get treated you would never getting any meds to help your symptoms.
I am all for exercise when possible and eating as healthy as possible but and I know some people have changed there diet and had some improvements but no one that I know has ever been "cured" for Lupus or any other auto immune disease.
Do you have a regular dr. PCP? alot of my meds are taken care of by my PCP . but I do go to the rheumy from time to time. Depending on how sick I am. Just take it one day at a time. I can understand with your sister why you would be more worried but they have made a lot of improvements and it is not neccesary a death sentence any more. I would however keep close touch with my pcp and ask about a new rheumy. Keep changing until you find the one that you can talk to and will help you. Plus you have to be patient. Some people never even know they have the disease. It's very frustrating. Hopfully you'll continue to come here because you will find a wealth of info. We may all have different ideas but you take what works for you and stick the rest away.
anyway glad to meet ya! looking forward to getting to know ya
carol
Posted 2/25/2009 11:21 AM (GMT 0)
My goodness, you have been through the ringer with those doctors.

To get right to the point, YES, blood tests can fluctuate with lupus and can change to negative after you've been on treatment for awhile. From what I've read, a positive ds-dna is very indicative of lupus, especially with all your symptoms.

Can you get copies of the labs where your tests were positive and bring them with you or have them sent to your new doc? And also the notes and records of that first doctor that did those tests and diagnosed lupus. This may help a lot in convincing a new doctor.

Now about the new doctor...personally, I would find another new rheumatologist and would be very leery of anyone who refers you to a nutritionist to cure lupus. I don't think I can link directly to the page, but if you need resources to find a rheumatologist, you might try lupus.org then click on Resources --> Find Local Resources --> Find a Doctor.

Don't give up until you find the right doctor. The good ones are out there, but for some reason it seems typical for us to go through several rheumatologist (or more) before finding a good one.

P.S. I'm so very sorry about your sister. The positive family history is important, and I think you're right about lupus being more common in blacks...at least it seems like I've read that before. But I DO know for sure that being black is NOT a reason to think you can't or don't have lupus!
Posted 2/25/2009 1:27 PM (GMT 0)
((((((((( Stacy ))))))))))) So sorry about your sister. That must be awful to lose your sister and then find out you have also have Lupus. YES! Lupus is more prevalent in women of color! I would believe the two doctors who said it is lupus. There is a link at the end of my signature (4 of 11) that shows the criteria for diagnosing lupus. Those criteria do NOT need to be met all at the same time. Your blood work CAN go positive and then negative and back again. Each blood test is only a "snapshot" of the moment. It would be like taking one frame from a movie . . . its NOT a complete story (per my rheumy). I hope you find a good rheumy in your current location who will treat your symptoms. Plaquenil is a great choice for a first med and it does usually help with joint pain and keeping things quiet. But it does take a few months to fully build in the system . . . so you won't get an immediate result . . . give it time. Knowledge is power and the more you learn about Lupus the better off you'll be. At first its scary . . . but then you'll get a sense of empowerment because you'll be able to understand more at your doctor appointments, you'll be able to give him/her more helpful information and get the most out of your doctor visits. Remember when you are reading and posting at any forum that most of the active members have some severe or chronic issues they are dealing with. Most of the Lupus patients who are stabilized and doing well do not spend time posting on these forum. Welcome to the forum and . . . Keep us posted!! Blessings!
Posted 2/25/2009 4:16 PM (GMT 0)
Thanks so much for the informative posts everyone. I greatly appreciate it. I have started back to taking the plaquenil and I am seeing a new doctor next week. I'll have to be referred to a rheumatologist, but I'm going to choose which one.

I do have copies of all of my labs and medical records so I can give a copy to my new doctor. I'll keep you caring people posted on my progress. Thanks again!


Stacy
Posted 2/25/2009 10:26 PM (GMT 0)
Stacy,

I understand the frustration of having different doctors give you different diagnoses. It sounds like you're doing your homework and taking charge of your health, and I'm glad you're going to see a new rheumatologist. It sounds like you have received some bad information.

Rosie is correct. I found the following comment by a doctor who gave a talk for the Lupus Foundation of America:

"Dr. Gilkeson:
African Americans have 3-4 times the prevalence of lupus than Caucasians, so ethnicity is important. Blacks also have a higher prevalence of severe disease. We do not know the answer to why to either of these."

You mentioned having a positive Complement test. Having a positive result on the Complement test means that the score is lower than normal. Low complement indicates that your lupus is flaring. You might want to check the lab results to make sure the results were positive. We're used to thinking that positive means higher than normal.

I hope you'll continue to join us here, and please let us know how you like your new doctor and what you find out.

Pat
Posted 2/27/2009 3:00 AM (GMT 0)
Stacy,
Welcome and my heartfelt sympathy about your sister. I swear, I don't know what get's into some doctor's , or people in general, to make them say such stupid things! I had a positive ANA and Mayo Clinic and was diag. with Lupus and Sjogren's disease. I just saw a new rheumy in Columbus, Ohio at OSU and my ANA was negative but I'm on Plaquanil and have been for several years. That can cause the ANA to be off. Right now I'm going through some sort of flare....everything hurts, my chest burns, I'm having nasty chest pain and my hair is falling out in chunks! I just had a stress test and echo so I know that the pain is not cardiac related. Wouldn't it be nice to have a break from all of this for just a few hours? There is no "cure" for Lupus. Read as much as you can because the doc's don't tell you everything. I just read a book today called "Positive Options for Living with Lupus" by Philippa Pigache. Short and to the point. On of the best I've read. Keep us posted on how you are doing. We have to stick together!
Nurse2
Posted 2/27/2009 6:32 AM (GMT 0)
I am sorry to hear that. but can not help!
Posted 2/27/2009 1:35 PM (GMT 0)
Hi Stacy,

You've already received some great responses.  I just had to say that I'm appalled that any doctor, much less a specialist, would say you don't have lupus because you're black?!  Makes no sense.  the disease is more prevalent in the african american population than in any other ethnic group.  And you also have the family history.  One thing to keep in mind is that although you definitely have an autoimmune thing going on, it may not be just SLE.  AI disease tends to run in families, but usually you get a different AI disease than your family member.  That being said, my mother had MCTD, and I have a dx of RA.  I see a lot of the very same symptoms in me that my mom experienced, but I'm a different person and it has affected me much differently.  My mother was much sicker than I ever was.  and I don't yet test positive for MCTD.

El

Posted 2/27/2009 4:12 PM (GMT 0)
Hi Stacy, welcome! Everyone has given you great advise I just wanted to welcome you to the board and offer my sympathy for the loss of your sister.

I would like to say I would not listen to what a neurologist has to say as lupus is not their specialty, stick with what a rhuemy says about lupus!!

Lupus tests can change from month to month. My ANA was positive for 2 years (1:640) then went down to 1:80. That is why it's important for your new rheumy to have ALL of your records including lab tests for the past year or so. With your symptoms, positive labs that you mentioned and your strong family history I would say it looks like lupus but the good thing is it's not a death sentence like it use to be. There are some good medicines out there now, but you have to make sure you take all your meds as instructed, always keep your appts with your doctors and be very open and honest with them, let them know of any new symptoms and how you are feeling!
Posted 2/27/2009 5:45 PM (GMT 0)
Hey Stacy! Welcome to the forum. There are some really great people here and they have great advice! One of the highlights of my day is getting on here and seeing what everyone has to say...sometimes they have really funny....well doesn't start out funny but turns into funny posts. I see that you are from NC...me 2 ! This weather is crazy...The high is 60 somethin degrees and then it is supposed to snow Sunday night and making icy road conditons for Monday morning...I can't get used to this weather. No wonder why everyone's body is going crazy around here.  Well I just wanted to welcome you and keep us updated on what the new doc says! Amy
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