Confused

[Wench01]

I posted on this site over a year ago stating that I was in denial, I had to start a new membership because I did not remember my username or password, anyway, I was told over a year ago by 2 doctors I have lupus, I refused to take Plaquenil because I don't really have any symptoms but the sore joints, I am 49 now and have had sore joints since I was 21 and I have not taken anything for it yet. I was seeing a Rheumatologist and I told him I would not take the Plaquenil, he asked if he could monitor me, I told him yes. 3 months later he did more bloodwork and said that I had lupus and really wanted me to take the Plaquenil. I did not want to start this drug because of its side effects, to me they were worse than my sore joints and not worth it to me. I started taking Triple Omega 3-6-9, went back to the Rheumatologist 6 months later for more bloodwork, he came in the room and said "wow" the Plaquenil must be working your bloodwork looks much better, then he flipped his lid when I told him I never started taking it, needless to say I never went back to him. I went back to my family Dr. to have him do bloodwork and check my urine, the strange thing is the bloodwork came back even better. My Anti-nDNA (DS) came back negative and the urine is fine (it always was) I guess my question is, what is making the blood tests come back with different results each time, how can the Anti-nDNA be positive at least 4 times and now it is negative? Sorry this is so long, but I am really confused about these tests. Also, I have been in denial since they told me I had lupus, I don't know if it is the positive attitude I have, but I have been going in the sun as I always have and nothing has really changed in my health. Thank you for listening to me.

[Allerian]

Blood tests can go positive and then negative. I have had two low positive Anti-Dsdna tests all the others have been negative. For some, it is influence by medication and disease activity. Sometimes, if you are treated with high dose steriods and immunosuppresive drugs it can make the blood tests turn negative. Also, a Lupus diagnosis is not based on one blood test but many and your clinical symptoms. So, I would say you probably still have Lupus just this time this particular test is negative which is normal for this disease.

[Allerian]

Oh, and like you I get a lot of joint soreness/inflammation with my Lupus. You can still benefit greatly from Plaquenil which is a VERY SAFE drug. I have no side effects and my rheumie in all of his years of practice (a lot) has never seen any of the serious side effects. I have been on Plaquenil for 5 years. Also, be careful about your joint problems because I know have joint deformities in my hand joints from the arthritis. And it's not rheumatoid either. Lupus can cause a deforming non erosive arthritis. So, be careful about not treating.

[Lily]

Hi there and welcome back,

Allerian has just about said it all really, the blood tests are not a great indicator of whats going on inside, however they are useful for diagnosis. Once diagnosed most docs go on symptoms, a negative ANA in a diagnosed patient does not mean their lupus has magically disappeared off the face of the earth.

I am assuming you had many symptoms of Lupus when you were diagnosed? Sometimes there are rises in ANA and even small ones in dsDNA from normal immune activity such as fighting off an illness.

Regardless........ the disease is one which waxes and wanes for many of us. It can go into remission in some all by itself, mine certainly did from my teen years through my twenties. It certainly hit with full force after that though and as I hadnt been diagnosed the consequences were quite marked, had I been diagnosed then I feel the outcome would have been improved.

You on the other hand have the chance at taking a medication that could make all the difference in your future health and damp the disease process down now before it possibly escalates and causes you some damage. That would explain why your doc was annoyed you ignored his advice to start Plaquenil. But thats your choice and one you have to make with your eyes wide open :)

Once diagnosed our docs sometimes dont even bother doing an ANA test anymore, they go on symptoms and how you are feeling above all else. They might run it now and then and some extras including urinalysis in order to try and sort out what is causing an obvious exacerbation in symptoms.

Plaquenil is considered a very safe drug, safer than many things we can take over the counter, and certainly better followed and trialled and documented for decades. The main (and very rare) problem with it is the small (most Optho's say 1%) chance of retinal damage. But that is spotted early as long as you are having regular eye check ups - 6 monthly is recommended at first, then if no problems, they often extend that to yearly.

Good luck on your decision :luck:

What was your username before? It is helpful if people can remember you and your previous situation?

love
Lily

[Clare.T]

Hi Wench

I'm not sure why you are posting.

By the sound of it, you have been very fortunate. You did well to get regular checks for any sign of worsening disease. Lupus comes and goes and its course is quite unpredictable.

It's not quite true to say a person either "has lupus or hasn't". That comment has its place when doctors are refusing to treat or take seriously because there is no organ damage.

That's all that's meant by 'mild' lupus - no organ involvement. Its effects might not be at all mild in the usual sense. Each person has to decide for themself if they want to take meds or not, so long as that decision is based on accurate information carefully evaluated.
That means accurate information about the proposed medicines and about your lupus. I did much the same as you when I refused to take Prednisone, reckoning that I would rather live with my symptoms than risk the side effects of that drug. I was also refused further treatment by that lot of docs. Luckily I found a doctor who took a different approach and also I was on Plaquenil at the time which was helping but not enough.

The best doctors will respect their patient's decisions even if they think they are ill advised.
However, if all you need is regular basic checks, why take up a specialist's time when there are so many people who desperately need expert help

If you decided that you preferred not to take Plaquenil but to take your chances instead that's OK.

As the others have commented, the anti malarials are about the best known and safest but very useful drug there is, Plaquenil in particular. If you decide to have no concerns about sun exposure that is also your choice. Not everybody with lupus is photosensitive and there is evidence that in some people they are less sensitive when they aren't flaring.

The disease is the symptoms not the presence of antibodies. If there are no symptoms and blood work is negative you are in remission.

Lupus is not necessarily a progressive disease. In some people it will advance even with the best treatment. In others it is easily controlled with simple medication some will respond so well to medications that they can stop taking them. There's no telling what will happen in any individual.

The omega oils might reduce inflammation a bit thus easing joint pain but nobody has ever claimed they radically changes the course of the disease.

I hope this lessens your confusion. Nobody can say if your decision not to take Plaquenil was right or wrong. It's simply the decision you made and as luck would have it the disease hasn't worsened. :)

Good luck to you

Clare

[Wench01]

Thank you very much Clare, that did help. Like I said, I am very confused over this whole thing. I am still seeing my family Dr. and having my blood and urine tested, I will go on the Plaquenil if things get worse, but as of now I just don't think I need to, my family Dr. is not pushing it and said that is up to me, as where the Rheumatologist said "take it or don't come back". I know most people on here really suffer with lupus, I am happy so far mine is not bad. I understand that the Omega 3-6-9 does not make the lupus go away, but it did help some with the sore joints. My joints are really only sore when I get up in the morning, or get up from sitting on the floor (I call that my old lady gunt LOL)

Thank you all so much for helping me to understand this disease, you have told me much more then that Rheumatologist did, he just kept telling me I had to take Plaquenil, but when I told him that my pain was not that bad, he could not give me any other reason to take it, just do what he said.

[Clare.T]

Good ! :)
Now I will tell you that I would not hesitate to take Plaquenil so as to reduce the risk of the disease developing. I also don't believe in the virtue of suffering. I would rather take Plaquenil than any NSAID.

As the saying goes " they will have to prise my Plaquenil from my cold dead hands "

:)

Clare

[angie1]

Hi Wench,
I agree with Clare. If in the future you need to take plaquenil, don't worry. I have been on it for over 8 years and I have not had one problem with it. It has helped me greatly. I had lung involvement before the plaquenil and I have had no more problems since I began taking it. My doctor says I will be on it for life and I'm fine with that. As long as the doctor monitors you and you have regular blood tests, you should be fine. Hope that helps!

Angie