What does it all mean? - Immune Disorders Message Board

mm9221 · 04-10-2004, 12:40 PM

Does anyone have any ideas they'd be willing to share? I've been seeing a rheumatologist for one and a half years now. I went originally because I was having lots of joint pain that hadn't resolved after treating my hypothyroidism and depression.

The original arthritis started in my index finger on my left hand. It swelled up badly in the spring of 2000. I was four weeks pregnant at the time. Since I was pg, I didn't think there was anything potent enough to treat it that I could safely take, so I never mentioned it to anyone until the summer of 2001. That was when my thyroid went hypo.

My sed rate is normal every time it's checked. I have been tested for rheumatoid factor three times and it always comes back negative. The new test for RA came back negative as well.

I am HLA-B27 positive----that's associated with ankylosing spondylitis and some of the other spondylarthropathies----and I do have some back pain and have had trouble with my hips as well, although there are no erosions on the X-rays I had done last year. Back problems do run in my family.

I had a complete body ******** last year which showed big areas of inflammation in my hands and wrists, areas of inflammation in my chest (which explains the chest pain I've had now for several years----and THOSE tests are all normal), and some in one of my heels.

Here's what I do know: I have some form of inflammatory arthritis, it does cause pain for me. I've been able to exercise and do yoga and tai chi as well as cardio and weights to maintain my flexibility and strength.

Here's the one NEW thing for me (from the testing done last month):

My ANA came back positive for the first time ever. Ten years ago it was negative. In 2001 it was negative as well.

The lab report says positive, 1:160, homogeneous pattern

complement C3 was 161 (range 79-152)
complement C4 was 44 (range 16-47)

From what I have been able to read, this doesn't appear to be lupus. Inflammation of some kind is present, but the pattern homogeneous usually shows up in drug-related lupus. The drugs I've seen listed for that are not ones I'm taking.

All the other tests were negative and or way in the middle of the normal ranges.

Does anyone have any ideas? I'm really at a loss to figure out what to do next. My rheumy told me he'd put me on Remicade if it weren't so expensive. Even under my insurance plan, I wouldn't be able to afford it and take care of other things around the house.

Thanks for any ideas. I'm stumped.

Marimac · 04-10-2004, 08:26 PM

Have you explored possible food allergies or chemicals that you may be in contact with that could be eliminated in your environment, since you are not able to pay for the remicade treatments. I know the pain is nagging and can eventually weigh down the most cheerful person. I know that there are definitely food items that cause me to become more inflammed in general. I have the swollen joint on my righ index finger. I also have inflammation around my knees, hips and ankles of both legs. My neck has several areas of inflammation that do not ever stop being tender.
I am trying to control everything at this time by avoiding foods that cause inflammatory responses. I did this by eliminating the things "I thought" might be contributing to the problem then after a while added them back to my diet. If the symptoms did not increase I kept them in my diet and if my pain did increase after eating them I stopped. One of the many things I stopped eating was ketchup. Since that time I have noticed that anything with the ingredient vinegar, makes my inflammation worse. I am sure there are more items out there. Today I ate some ketchup with some fish, I am now feeling my knees increased burning, feverish feeling as I write this. It will pass, but if I eat a lot of different things that irritate me, I will have a hard time walking the next day from stiffness and pain. I hope this gives you some ideas you can work with for now.

mm9221 · 04-11-2004, 12:58 AM

Thank you Marimac. I am so busy some days that I barely think about what's causing the pain (in regards to whether eating certain foods are part of the problem). However, I do agree with you that I should give it more thought. I have read that a no-starch or low-starch diet is better for those with ankylosing spondylitis. One of my friends, who is an herbalist, told me that vegetables (and there may be fruits as well) from the nightshade family aggravate arthritis. Tomatoes are in the nightshade family.

I was hoping that this testing would be more definitive. It's possible that my insurance company would cover more of the medication if I had a diagnosis. Indocin takes care of most of my pain.

You have some great suggestions. Thank you!!!

Takbeer · 04-15-2004, 09:43 PM

Hi Elaine,
Have blood work done to make sure it's not a myositis. Have them check CK enzymes.
Myositis is an autoimmune disorder that affects the muscles and sometimes the skin. I went undiagnosed for over 17 years. For a lot of women it first shows up during pregnancy.

Good Luck!

mm9221 · 04-15-2004, 10:33 PM

That's a new one for me to check out. I know that one of the doctors I've seen has diagnosed me as having fibromyalgia/myofascial pain. Thank you for the suggestion.

Elaine

(I'm ready for spring)