Negative ANA

Hi All,

I received a call from my rhuemies office earlier this week telling me that my lab work looked great and that the MRI/A I had done last week on my brain also looked good. What a relief that was! Anyway, the faxed over a copy of the results to me and to my surprise my ANA even came back negative, this is the first time in several years. I noticed out to this side the doctor had a "? mark SLE" written down. I'm not sure what this means. I don't go to see him until November 3, but I'm wondering if he is questioning my SLE diagnoses now because of the negative ANA.

Has anyone else had a negative ANA come up like this after many years of positives? Needless to say I would love not to have SLE, but then I would still need some explanation as to why I feel so dang crappy and have all these symptoms. Also, on the day I had my blood drawn they gave me a flu shot before drawing blood, not sure if that could alter any of the labs. Or if the meds I am on could alter the ANA or any of the other labs. Any input you all have is greatly appreciated.

Melissa

I was recently diagnosed based on my symptoms, as my ANA was also negative and sed rate was within normal range. I am fortunate my Rheumy does not base dx only on lab results. Hopefully your Rheumy is as thorough and understanding.

Beth

Hi Melissa,

I have had negative ANA but I have many other factors that tell my docs that I have SLE so that is not the determining factor for them. In fact, my original diagnosis came back with a negative ANA, so I don't think that is gospel. In my blood work, there were about 4-5 other red flags that told them I had SLE. Since I am medically challenged, it all went in one ear and out the other.

Monica

Well, I saw my rhuemy again today, it was a long trip and I worn out. They called on Thursday saying he wanted to see me Monday morning, not an easy task when you live 3 hours away. Anyway, we went up Sunday and attempted to enjoy ourselves in the city for the day. Let me tell you, I am paying for it today.

Anyway, my doc says the prior blood test tell him there is no doubt about the fact I have SLE, added to my symptoms and mounds of other things. That's good and bad (good that he still believes in me and my situation, but bad that I still have this crazy disease, right?). Things are still not getting better and he is not happy with the progression of my disease, so he is moving me off of methotrexate and on to imuran. I am not opposed to stopping the injections by any means, but not certain how I will be able to handle the imuran.

I also am leary about the fact he stated the imuran has added risks and takes 2 to 4 months to begin showing a positive affect. It's as if we lupies take two steps forward and five steps back. Another, he stated the risk of cancer goes up immensley with imuran, so that's another issue I am not fond of.

Many, many, sighs!
Melissa

Hi Melissa:

I really hope things start turning around for you soon. I know how you feel. I'm sorry about you having to change meds., too. I am like you - leary about the effects of new meds and hoping that they will help us and not hurt us.

Hang in there and I will keep you in my prayers.

So curious is to why he is changing your med to Imuran only because I am on the methotrexate and I am wondering if it is making me feel worse sometimes. It is keeping the inflammation down but I just wonder if it is the cause of making me feel crappy sometimes. Did he tell you why he is changing your med? Monica

Hi Melissa, Beth and Monica,

I'm jumping in to this conversation a bit late but I hope I can add some useful info!

There has been much discussion about neg/pos ANA and just how accurate it is in the use of diagnosing SLE, I have had a discussion with my Rheumy regarding this (because I believe my sister has a CTD but her ANA is neg.) and he told me that he had been amongst many heated debates at conferences regarding the accuracy of this test. He believes that you cannot base a dx solely on this test as they are too inaccurate! He also believes Rheumatologists who base an SLE diagnosis solely on ANA tests shouldn't be treating anyone with SLE because as he said this is the reason so many people with SLE go untreated and undiagnosed! He believes there should be special training required to dx SLE as it is such a complex disease! I think he's right, either Rheumy's need special training or we need a more accurate test!!

Melissa and Monica,

I am on Imuran, I started it back in June because the Mtx was causing my LFT's to go through the roof ! It was the best thing I ever did because my bloods have all returned to "normal" (well SLE sufferer normal), I have tolerated it very well, I did have some problems with nausea for the first couple of weeks but it was no where near as bad as what it was on the Mtx! It only took about 4 weeks before I started to notice a difference with my joint pain etc; don't get me wrong I still have pain and some days it is really bad but they are alot less than they were As for the risks of cancer from the research I have done it seems that there is not alot of difference between the Imuran and Mtx, I just try not to think about it too much and focus on the good it will do.

One thing I will stress to you Melissa is to make sure you take your dose in the morning and drink plenty of water to flush it through. When I first started it I was taking 50mg in the morning and 50mg in the evening (as directed by my GP), BIG MISTAKE I ended up in hospital for 4 days because it set off a kidney infection !
Since then I have had no problems though.

Goodluck with it and if I can help with anymore info on it please let me know. Sorry this post has turned out to be so long.

Take Care
Love and Hugs
xxxMaz

Thanks Maz, Reason I ask is because since I have been on the mtx, since July, I have lost 13 pounds and have no appetite at all. The doc says it is the lupus but I can't help but wonder if it is the mtx. I have nausea that comes and goes, but no patterns, which is why the doc says it is the lupus. I never had this before I took the mtx though. I get nauseas even while I'm eating too. Nothing I eat sounds good at all and it's starting to really bother me because this has been since July. The inflammation has really come down and my headaches are much better but I just don't feel that great and I can't hep but think it is the mtx. I do take the injections rather than the pills to avoid the nausea and I take the luecovorin as well. Just can't help but wonder if another treatment might be better. Monica

Hey Monica,
My rhemy prescribed me folic acid 1 mg for the nausa with my mtx. I to was having the nausea, but started taking all my mtx in the morning along with my folic acid and the nausea disappeared.
You can by the folic acid over the counter, you might ask your rhemy about taking that as well.
Mel

Monice & Maz,

Great input and conversation, that's why I love these boards! My rhuemy switched me to imuran for a number of reasons. First the mtx did not seem to be doing the job, my joint pain had not seemed to get any better. I started first with oral form, then we thought maybe I was not getting enough absorbed, so we switched to the injections. Rather than help the headaches it seemed to be making them worse as well. My LFT's also were going up and down, never in the normal range, they started off extremely high, then came down, but never in the normal range again.

I had been on the mtx since March or April, can't remember, anyway, my rhuemy felt as though I had been on it long enough that if I was going to see any improvement it would have been long before now. It seems I am going the wrong direction unfortunately.

As with you Monica, I too have begun to loose weight. I have lost about 11 lbs. I have not asked him it if was the lupus or the mtx. At this point that was the last of my worries. But if it continues I will have that discussion, I can't afford to loose too much either. Much like you I barely eat, nothing sounds or looks appetizing any more. I would bet I eat less than a 1000 calories a day.

Thank you all for your support and for all the input. I truly appreciate you.

Melissa

Thanks Melody, actually the leucovorin does have folic acid in it and I do take reglan which the doc prescribed when I get really nauseas but I am just getting concerned because my weight is just continuously dropping and I never feel like eating at all.

Melissa, I am like you, I bet I don't eat 1000 calories a day and I get all of my vitamins in because I take a lot of supplements but I worry about the protein. Probably should be drinking protein shakes but the thought of them just is nauseating. Yuck. I go back to the rheumy the 1st week in Nov so I'll express this all again then. My blood work so far seems to all be fine so I know he's not concerned there and he has been checking it monthly.

Now, not to sound ignorant here, but explain to me what LFT's are.

Hi Monica and Melissa,

Monica, LFT's are Liver Function Tests and you are not ignorant at all, I was actually thinking about starting a thread with all the abbreviations in it!!!

As far as the nausea and loss of appetite goes, I know exactly what you mean, I would take my mtx on a Sunday morning and I would eat very little until a Thursday and then it would take me all my time to eat, in the end all I was having was Fruit Smoothies with egg for protein! I didn't find the Leucovorin or Folic acid helped me much either. Since being on the being on the Imuran I have no problems with my appetite and hardly ever have nausea ! Imuran is no where near as harsh on the stomache as what Mtx is, I have had bowel troubles ever since I was on mtx, I thought it would reverse itself once I stopped it but unfortunately it hasn't, I think it has done irreversable damage!!!

Monica, I think it is definetly worth you asking your Rheumy about changing over to Imuran. Please let me know what he says.

Melissa, have you started the Imuran yet?

Take Care Girls
Love and Hugs
xxxMaz

P.S. Hello Melody

I agree with Maz, it might be worth you research Imuran and speaking to your doctor about it Monica. My rhuemy actually talked to me about switching when I saw him in September, he asked me to research it on the web and let him know what I thought when I came back in October. He also wanted to check my blood work in the meantime. I did research as much as I could and realized much as Maz said the benefits seem to out way the risks and since the mtx did not seem to be helping I felt it was worth the change.

Melody, I take folic acid as well, my rhuemy put me on 2mg a day. I was under the impression it was for fatigue, I guess it is to help with nausea as well. Good to know.

I started the Imruan yesterday. So far I have had no issues, mind you I have only had two doses, but from what my doc said some individuals have violent reactions after just one dose, so at least I managed to get past that, which is good. He is started me on one pill for the first week, then move up to two. He said he felt like my full dose would be 55kg when I get to that point according to my height and weight (if I understood him right).

Thanks again ladies,
Take care,

Melissa

okay, thanks for the advice ladies. I think I will research the Imuran in the next couple of weeks before I go to the doc so I can go prepared. Melissa, keep me posted on any side effects in the next couple of weeks that you may have, if any. The violent reactions is kinda scary.

Thanks for the clarification on the LFT, Maz. Once you said it, I knew exactly what it was and it all made sense because my doc does the lab work every month. DUH! I think a thread with all the abbreviations would be really helpful, if you have the time. Sometimes I just play along like I know what I'm talking about.

Thanks for all the advice!!

Monica

Hi Girls,

Melissa, glad to know you had no immediate reaction to the Imuran , I hope it continues to remain that way! Please keep us informed of your progress.

Monica, I know what you mean about "playing along" when people abbreviate words I have done this myself on other boards I had thought about an abbreviation thread when we first started out and now I think I will Hopefully that will help you, me and anyone else who "plays along" to understand what others are talking about! Please let me know how you go with your Rheumy re: Imuran, I would appreciate it.

Take Care
Love and Hugs
xxxMaz