I'll attempt to answer some of your queries and hopefully others will come along with their input too.
First let me say that I am sorry for all you have been and are still going through :hugbetter: but I am so glad you found us!
You certainly have a lot of symptoms that would land you a diagnosis of SLE, and even some blood results that would be enough to get you diagnosed. In the end the doc makes the call based on what he sees and taking those blood results into consideration. It's quite possible he does think you have SLE but does not want to put it down as that ófficially' - reason being it can affect all sorts of things like insurance etc. A diagnosis of UCTD and Sjogrens is maybe a compromise by him and is neither here nor there really as far as treatment goes. Treatment is tailored to the individual and their particular problems, we all have slightly different blood results and vastly different symptoms. The meds for all these similar diseases are very much the same depending on what your case requires to help bring the disease under control.
Hopefully he has your best interests at heart and is trying to give you a better quality of life, regardless of what he calls it. That's more important than anything really, some here don't even get recognition for their suffering and others are sadly undertreated. With a bit of knowledge you will be able to judge whether that's the case or not. Hopefully we can assist you in gaining that knowledge.
The Ro-SSA antibody you have is associated with both SLE and Sjogrens. It's possible you have both conditions really looking at your symptoms. Your ANA is high enough for a diagnosis, along with that additional bloodwork and given your history of symptoms. Renal acidosis is not an uncommon finding in someone with primary Sjogrens Syndrome. A lot of your other problems are very common in SLE. You probably have a crossover disease of both if one wants to speculate :hehe:
When you mention the positive antiphospholipid antibody do you mean the Lupus anticoagulant - seeing as your Cardiolipin antibody was negative? A positive on either one of those tests provided they are repeated 6 weeks apart and found to still be positive would be significant. With a history of clots and this follow-up testing and one of those positive it would be enough to get you diagnosed with APS (antiphospholipid syndrome) which quite a few here have along with their Lupus. It can be found with Sjogren's too and also can be a stand alone diagnosis with the patient having no other illnesses. The antibodies by themselves without any history of clots can be found in SLE. Gets complicated doesn't it :hehe:
Lupus tests including ANA can fluctuate a lot especially once treatment has been instigated. Plaquenil or Pred can revert positives back to negatives and therefore the test is useful for diagnosis but not necessarily as a monitoring tool as to how your disease is going. Far more important are the symptoms you are still having. When diagnosing they take past positives into consideration as long as there was no other reason for it (i.e. infections and some other conditions can cause a fleetingly ANA positive result). It is said that around 2-3% of SLE patients will never return a positive ANA titre. They are classed as sero-negative and their diagnosis is usually supported by either a positive on an Ro-SSA test, a skin biopsy or kidney biopsy.
As far as your meds go what treatment are you on for the migraines? It's a shame you are allergic to aspirin because if they are related to APS that's all some people need to get relief. Does anyone monitor your INR bloods? If they are not at a desirable level and this is APS then you might find that an anticoagulant would be the way to go. You may already be on one though? seeing as you list blood clots as one of your symptoms.
Migraine type headaches are common in Lupus themselves sometimes and nothing to do with having or not having APS. If that's the case often getting the Lupus under better control will ease the headaches.
Did your Rheumy suggest going to 400mg Plaquenil daily before trying the Methotrexate? Unless you are very small in stature and weight 400mg daily is our usual dose, provided we have a clean bill of health as far as the rare risk of adverse eye effects go. I would be inclined to increase Plaquenil before adding something like Methotrexate, but maybe he has reason not to increase it? If he doesn't then his logic isn't understandable.
Methotrexate despite some bad publicity is a very effective widely used drug, it is especially helpful for joint pain in Lupus. Many here are on that drug with some possible initial nausea the first month or so then smooth sailing and nothing but positive benefits. It's important he prescribe Folic Acid along with it to counteract some of the negative side effects. Even those few whose nausea does not subside were switched from oral metho to injectable form which they can tolerate much better. Monthly blood tests are a necessity to monitor full blood count and liver function. That way they keep a close eye on you and should there be a problem then you are taken off the drug. Most people tolerate it very well though and the blood tests are just a precaution. It's important to note that you will read about this drug in relation to much higher doses given to cancer patients, so therefore some of the problems listed do not occur with the much lower doses we as Lupies take.
I hope some of this helps and encourages you to ask more questions, we will try and assist if we can
Meanwhile I wanted to wish you good luck with your Nephologist appt.
love
Lily
