Help ! I'm so tired of doctors...

[Joni686]

My hope is someone can help me understand where to go from here.  When I first became ill it was with some pain but mostly fatigue.  Back in July of 2007 the fatigue became so bad that I was forced to stop working.  All I could do for many months was make it from the bed to the couch and watch a bit of TV and sleep off and on all day, mostly falling alseep even in the middle of a 30 minute show.  I was first diagnosed with Mono which later we figured out was wrong.  Then came more pain and more blood work and I was positive for Mono, Epstein Bar, Cytomeglovirus, Chicken Pox and the Measles.  Now I understand that if you have at any time had those diseases, they will stay in your body somewhat but it was showing positive, enough for the city to get involved thinking I had Measles.  I then started on Prednisone and was told I had Fibromyalgia and maybe a Connective Tissue Disorder.  I was so dizzy I couldn't even walk across the room that I would walk crooked and run into something.  I slowly took myself off the prednisone and the dizziness got better.  I still get dizzy but they are dizzy spells, some are pretty bad but it's not constant dizziness at least.  I finally came across a doctor who checked my ANA and we found it to be 1:1280 which I understand is extremely high.  One question I have is that at one time while on steroids it went down to 1:300.  I have been told different things by different doctors but my question there is can steroids such as Prednisone actually lower your ANA?  I have had my DNA checked for Lupus and it is negative and I have had a Smith Test and it is negative but I continue to be fatigued, not quite as bad as 6 months ago but still fatigued and still have whole body pain.  I am on Celebrex and if I miss a dose I am in a lot of pain so I know it's helping.  I have a terrible memory and terrible concentration.  Most recently my hands have started to have veins pop up when I am going from a warm bath to the cool room (getting out of the bath) and sometimes a little on my feet.  One day I went shopping with a friend and I was not used to walking so much and at the end of the day my calfs looked as though someone had kicked me about 10 times and I was all bruised.  It went away after a warm bath.  My latest blood work shows my ANA to still be 1:1280 speckled, my complement level (CH50) is 44 BUT wouldn't Cellebrex be controlling the inflamation and have an affect on that number?  My Chromatin (Nucleosomal) Antibody is Positive 2.3.  My doctor keeps calling it Lupus and one doctor now says Raynauds or Vasculitis.  I asked if those could be the Primary disease or secondary and they say there is no way of knowing.  PLEASE PLEASE PLEASE IS THERE SOMETHING YOU CAN TELLME TO HELP CONFIRM WHAT IS GOING ON WITH MY BODY AND WHAT I SHOULD DO NEXT?  

[Joni686]

They did tell me it would suppress my immune system and that one time after taking Prednisone for several months it had gone down to 1:300 but the doctor sat there and scratched his almost bald head (I can still see him in my mind) and told me, "I don't understand why your ANA changed".  I told him, "Isn't it because I was on steroids?"  And he said, "No it would not change like that, not that much ever".  That confused me as to why I would even take the steroids then.  I sure wish I knew if Plaqunel lowered the Immune System.  I tried to call the Rheumy today and they were at lunch and before I knew it it was 5:30 so I am going to call tomorrow with more questions.  I just can't get a straight answer out of anyone.

[PlateletGal]

The only thing I know about Plaquenil is that it takes a few months to work before you see results.

I'm surprised what the rheumy's told you. The reason why they give steriods to people w/ autoimmune conditions is not only for the inflammation, but also to suppress your immune system because your body is attacking itself. Interesting.

[Joni686]

Thanks I will look at it.

I was on Prednisone for a while and my ANA came back at 1:300 one time but then it went back up.  Two Rheumy's told me steroids will not lower your ANA.  I remember one of them saying no and the other saying it would not have affected it that greatly and that sometimes different labs produce different numbers.  I stopped taking Pred. because it caused me to be too dizzy to even function but I did get a 160 mg. shot of corticosteroids in December and although it gave me a little relief for about three months, it did not lower my ANA.  One thing being on steroids did do is make me have every cold that passed by me.  I got sick when my daughter got sick and again when my boyfriend got sick.  I kept getting sick because of it suppressing my immune system.

My doctor now says I should not stay on steroids and has given me Plaquinel but I haven't taken it yet.  Do you know anything about it?

Thanks again for the website.  I will go to it now...

[PlateletGal]

can steroids such as Prednisone actually lower your ANA?

I would think so because steriods are an immunosuppressant.

Here is a link that is an EXCELLENT resource for people who have symptoms of an undiagnosed autoimmune disease. It is a checklist of symptoms and can tell you which autoimmune diseases go with those symptoms. I would recommend filling it out and giving it to your physician. Good luck !

link:

http://www.thyroid-info.com/articles/autoimmune-checklist.htm