Heya, Ari,

  I'm on MTX and Lodine for Undifferentiated Connective Tissue Disease. RF
neg., no AS antigens but a 1:3200 ANA titer. 1:6400 on the antigen I have is
full blown Lupus.

  There's also Mixed Connective Tissue Disease you might explore online,
too.

HTH!

Hugs from Rosie

Hi Ari,
For some reason, the regular DMARDS (like Methotrexate, Cyclosporine,
Salazopyrine, Plaquenil etc) are usually not very effective for spinal
inflammation in spondyloarthropathy, although they can be helpful in
peripheral arthritis. What's most helpful for the spine are the
TNF-alpha-inhibitors, i.e Enbrel, Remicade and Humira. I have tried all
three of them together with MTX (have AS and am HLA-B27 positive), and
am currently on Humira + 25 mg MTX with great success. In the past I've
been on Salazopyrine + Pred, MTX+ Pred, Salazopyrine+MTX+Pred without
much, if any, effect on my spondylitis. I was also supposed to try
Cyclosporine, although there was little reason to believe it would help
me, so instead Enbrel was added to MTX and Pred. The reason I stay on
MTX is because of peripheral arthritis from my AS, as well as other
autoimmune problems.

Also, those with psoriatic spondyloarthopathy aren't HLA-B27 positive
as often as those with classical AS; the psoriatic ones are just
positive in  about 40-50% of the cases. Sometimes the joint disease
precedes the psoriasis with years, and if you have been on cyclosporine
and/or other immunosuppressants and live in Australia (sunlight often
improves psoriasis) you may never have had any noticeable psoriasis.
You can also have something called inverse psoriasis, for example in
your ears, bellybutton or buttcrack, which might go unnoticed.
Psoriasis can also be confined to the nails, as pits (like the pits on
a thimble), thickening or nails lifting off the nailbeds.

There's also undifferentiated spondyloarthropathy; don't know how many
of those are B27-positive.

Some general info about spondyloarthropathy:
http://www.emedicine.com/med/topic2700.htm
http://www.spondylitis.org/about/undif.aspx

I believe that at least 25% of those who are diagnosed with AS are HLA-
B27 negative. I'm one of them, diagnosed about 15 years ago (?) as
"sero-negative spondylo-arthropathy, subset Ankylosing Spondylitis".

I'm currently taking Lodine 600 mg. twice a day, Sulfazine EC 500 mg. 3
times a day and Ultram 500 mg. 3 times a day (for pain). The main
problem I've got is that I acclimate to my meds after a while and the RD
has to switch me to another NSAID. I think it's time to switch again as
they seem to be failing again. My next appointment is on Dec. 14.

A few things which do seem to help me is moving about often (I lock up
if I stay in one spot too long) and stretching several times a day for
range of motion, esp. my arms and wrists. I also use extra blankets on
my bed wear a vest if it seems a little cool as getting cold also causes
me problems. I also walk with a cane. I don't always need it, but
anything which lets me take it a bit easier helps me for when I do have
to push myself.

I have a handicapped license and I use it if I'm not doing well.
Sometimes it helps just to have room to open the car door enough to get
in and out without contortions.

I've also noticed that on days I can take my meds in the morning and go
back to bed for while, I have less problem when I do start moving. It
probably lets the meds get to work before I stress the joints.

On last hint is to make sure that you make time to do something
enjoyable. A happy mindset does make it easier to get on with things.

Remember that no one thing works for everyone, and what helps someone
else may hurt you (and vice versa). Pay attention to how your body
reacts, and if something hurts, STOP DOING IT.

Thank you all for your replies. It all seems a bit much, and I want to
just pretend it isn't happening! I'm trying to arrange for some blood
tests with my usual round on Friday to see if we can narrow down the
diagnosis.

Ari