Sjögrens Forum

QUESTION:

I have been on the diagnosis round about for a couple of years.  I have had
wandering joint pain for a number of years but for the past 10 years in my hands
especially.  It doesn't seem to be related to any particular activity. It is
waking me up at night and easy generally during the day maybe because I am busy
and don't notice.  it can be really bad one day and gone to a different set of
tendons the next.  I have SSa and SSb + RF +ENA  normal C- Reactive ESR- 25,
3.6 white cell, 1.0 lymphocytes.  I have a dry mouth but always put that down to
my anti depressant, I have dry eyes lately but sometimes I think that maybe
that's hayfever as that has got worse as I have gotten older.  my biggest issue
is my joint pain and it come devoid of any swelling except on my thumb or big
toe which is only ever one side at a time.

My first rheumatologist said definitely RA, then she went away I saw her locum
who said maybe SLE.  went to see someone recommended by a friend who said,
hypermobile joints.  argh!  Is it worth me seeing someone?  I have ignored it
for the past 18 months.

ANSWER:

If things are not "normal", it seems reasonable to continue the "search". From the information you provided, the most important missing bit is whether the ENA is an Sm Ab or an RNP Ab. Sm favors SLE.  RNP favors MCTD (mixed connective tissue disease)

MIXED CONNECTIVE TISSUE DISEASE/ LUPUS/ SJOGRENS SYNDROME  can all be associated with migratory Arthralgia/Tendonitis-and can respond to Plaquenil.

The swelling of a toe (if not gout) and thumb (finger) may suggest Psoriatic Arthritis or other seronegative arthropathy-but your other symptoms did not suggest that.

The slightly low white blood count and lymph can be seen in autoimmunity, and you may have Sjs-but it sounds like it is most likely associated with another autoimmune process. You may consider being evaluated at one of the 3 SICCA Registry sites in the US (UCSanFransisco, Johns Hopkins, Philly). At least you can get the issue of Sjs resolved and they usually have you meet with a Rheumatologist-so you can get another opinion as well.

Even your primary doctor may be willing to prescribe Plaquenil for a 3 month trial for you. Remember if you stay on Plaquenil to check with your eye doctor to monitor for the rare side effects that can occur with Plaquenil (HC).

Hope this provides a bit of guidance.

best,

Dr.C.