View Full Version : Finally :D

11-05-2007, 10:50 AM
So today I went to my rheumatologist again(2nd appointment), and he said my labs came back negative. :( When he said that, I felt hopeless. But then he talked about how 20-30% of his patients with lupus(I think that's what he said) have all these negative blood tests, and I could have something called seronegative lupus, which I guess all your tests come back negative. He said he is going to start me on prednisone, 15mg for 1 week, 10mg for 2 weeks, then 5 mg for 1 week, then I see him again. He said if it works, he will start me on "lupus treatment" <---- what is that?
The other possibilites right now are of course lupus, then possibly CFIDS and maybe Reiter's syndrome(although that is just an idea, we don't think I have that.)
So, FINALLY I have a doctor who cares and who isn't giving up on me and believes me. :D
I know a lot of you have taken prednisone. About when would I notice a difference in my symptoms? A few days or a few weeks? And what symptoms would I notice a reduction of?
I am so happy right now that I am so close to some diagnosis after all this time. I really want this prednisone to work, I am thinking positive thoughts.
Thanks everyone! :lol: I hope you are all doing well!

11-05-2007, 07:21 PM
Hi Gisele;
I am also very happy that you've finally found a doctor who is willing to help you and who cares about you. He is correct, there are many lupus patients who have had negative lab results. You results could be negative this month, and show up positive next month and be back to negative again the following month. It has happened and it is not that uncommon!
Prednisone is a corticosteroid. It is most often are used for their its potent anti-inflammatory effects, particularly in those conditions in which the immune system plays an important role (such as Lupus). Prednisone is also an immunosuppressant and it affects virtually all of the immune system. These two reasons are why it is often used in autoimmune diseases, inflammatory diseases (such as asthma and Crohn's Disease), various kidney diseases including nephrotic syndrome, and to prevent and treat rejection in organ transplantation.
Corticosteroids typically do not produce immediate effects and must be used for several days before any effects are seen at all. However, it may take much longer before your condition responds to the prednisone.

Peace and Blessings

11-06-2007, 01:22 AM
Hi Saysusie! Thanks so much for the great information as always!
I wish all doctors knew that about how lupus patients could have positive one month and negative another month. It would help so many people out there get a quicker diagnosis. A couple weeks ago, my internal medicine doctor ruled out everything(autoimmune, lupus, etc.) because of my negative blood tests, she said it is nothing serious and nothing autoimmune. It's terrible that there are doctors out there like that who aren't updated on this information and who just give up on their patients. :?
I am also glad that you mentioned that it can take a while for it to take affect, I didn't know that.
I have read that it's best to take it in the morning because of something about the natural process of the corticorsteroid, have you heard about that? What I wonder is by morning, do they mean morning hours or morning like when you wake up?

11-06-2007, 02:49 PM
Take steroids at night and you will probably have trouble sleeping.

11-15-2007, 09:53 AM
Wow. I just came on this site to search for others who have been diagnosed as having lupus but have all blood work be negative.

It's weird. He says I have many "classic symptoms" of lupus, but the only thing "of concern" was a high ANA count. The rest of the tests showed up as negative. I do have a white blood cell count that "alert" the doctors and neutrophils so low they are considered "critical."

The rheumatologist went ahead and started me on hydroxychloroquine.

I dunno. I've been wondering if "Lupus" was just some "catch all" disease bucket for those with autoimmune disorders that can be directly diagnosed.

So. My tests came back negative but my rheumatologist says that only means that I have a very very very mild form of lupus. At least this rheumatologist isn't giving up on me like the last one I saw 2 years ago who ignored my symptoms and went solely off of my test results. Then shoo'd me away.