I was diagnosed with Lupus three years ago...all the symptoms and the ANA and anti DNA confirmed. I've done the plaquenil and tons of pain pills all to no avail. Rarely a break from pain and as time has gone by my vision has gone haywire.
My Rheumatologist took me off the plaquenil and we just let things ride with me taking pain pills and grinning and bearing it....he was costing me a fortune, so I didn't go back for a year. Well, my symptoms still have not really eased for more than a week at a time...my vision still goes to double and blurred, regularly throughout the day, every day.
I finally went back to the Rheumatologist last week and he sent me for new blood work. He also commented that he thought my skin looked strange as well as the texture of my hair. He said he was thinking maybe I was having thyroid issues along with the lupus.
Well, I went back today to get the results and guess what???? He says that my thyroid results were normal....and, so was everything else! Now he says, that maybe it isn't Lupus. His diagnosis is Unspecified autoimmune disease and Sjorgens syndrome (though the Sjorgens was not revealed in the tests either, but my eyes are so dry they are stickly, as well as my nose and mouth.).
Has anyone once diagnosed and confirmed with bloodwork ever went back to normal results?? This has me baffled. I still have all the same symptoms. He said this could mean I have actual joint damage since no pain meds help. He is starting me on methotrexate which also has me freaked out. Can someone give me some words of wisdom??? Thanks!
Biloxiblue, hi. Wow, I'd be confused, too! But since I'm merely a patient, please take what follows as possible questions, not as possible answers, OK?
There may be reasons *other than meds* for bloodwork being normal at times. e.g., I've read that some autoantibodies rise & fall with flare activity. What if, when your rheumie did your last bloodwork, you were NOT in a flare? I'd want a really good answer to that, if I were you. Another reason: labs vary. Another reason: dr. has to order all the "right tests" & not overlook ones that might clarify the core cause(s). What tests did he run? Did you get a copy?
Which "anti-DNA" were were positive for several years back: double-stranded or single?
FYI, the most definitive test for Sjogren's is a LIP BIOPSY. (And, just curious: can your pain meds cause dry mouth & eyes?)
If your pain is JOINT pain, were x-rays done to look for erosive damage? Or is it MUSCLE pain?
What pain med(s) have you been taking? Do you know their possible side effects? In particular, can they affect vision? Have you seen an eye dr. for an independent review? In your shoes, I'd see eye specialist ASAP, because you don't want to assume causality. i.e., what if your eye problems are totally unrelated to everything else?
I've heard of rheumies putting patients on a short course of steroids to see if they help; it's called a "steroid challenge", or something along those lines. Was this ever done?
Most libraries have lupus hardcovers by Dr. Daniel Wallace, Dr. Robert Lahita, or both. Dr. Wallace covers blood results, Sjogren's, thyroid problems, APS, etc. In a wonderful chapter toward the end of the book, he discusses how drs. determine if it's lupus vs. some other "close cousin". He also discusses meds, including which are appropriate for people WITHOUT major organ involvement & which aren't.
Bottom line---if I were in your shoes, like you, I'd want compelling reasons to start methotrexate. I hope others here chip in soon! Sending my best wishes, Vee
hi, thanks for responding. I'm not sure which anti dna was positive. Yes they've done xrays and the opthamologist's office has become my second home for the past year. Initially he thought it was the plaquenil...so they took me off of it. My eyes were so dry it was awful...they had me using restasis, did nothing. Then he plugged my lower tear ducts....nothing, still dry. My Rheumatologist had me stop everything including Motrin and aspirin. No change. the opthamologist said it had to be related to the lupus.
I still have all my joint pain as well as dry, hot fevers at night and sometimes during the day. Total fatigue, muscle soreness. sores on my head and in my nose sometimes. Sometimes in my mouth as well. The rheumatologist says that the reason he is hedging on the lupus diagnosis is because some of my symptoms seem to be of a couple of other autoimmune disorders. The blood work just really floored me coming back negative.
hi biloxiblue ... AAAARG! + HUGs sorry things are tough at the moment.
gets v.frustrating sometimes but as long as we are living then the learning continues.
neg bloodwork comes up time & time again ... please remember bloodwork is not the sole criteria for dx lupus. Blood results do vary + in lupus is usually indicative of *current activity* + *organ involvement* (my personal understanding) Perhaps neg result NOW means no *major* disease activty or possibly results lean stronger to other AI disease.
i do not think it should it mean your previous dx was wrong - especially if you meet the other criteria but maybe because you are not having any physical relief to lupus specific treatment they are re-thinking? (again, only my opinion)
you mentioned your skin looked odd ... if i remember correctly ... there is a specific anti malarial brand that has a side effect of greyblue looking skin (sorry not sure which) Dr Daniel Wallace's book has a chapter on drugs their effects & side-effects ... (have lent my book out or i would look it up) ... try get hold of a copy! explains things the way we/laymen can actually understand! i learned more from my 'little hardcover' + 2 months on these boards than my rheumie explained in over 6 years!
i have 'eye issues' too ... was dx with 'dry eyes / vortexes' secondary to chloroquine. became a huge problem not being able to see properly ... try taking minutes when you can't see what you are writing ... oh boy! now have 'minor' issues, dry eyes, red eyes, light sensitive etc (suspect an underlying sjorgens thing here) but i can mostly read now ... point is - you are not alone! and it does suck! but that is why it is important we address any symptoms early so that any 'damage' can be stopped/reversed etc ...
Hang in there and hope get your answers ... if the doctos is not giving you answers think about getting a 2nd opinion?
PS please watch your stomach + kidneys with those pain pills! if they are not giving any relief ask your doctor if u need to take them? our bodies have to suffer an onslaught of treatments which sometimes make us sick until we realize that they don't work for us as an individual ... there is mostly something that will work for us ... trial & tribulation, living & learning. that rollercoaster ride we are on (saw a post once re:lupus being more like the whole amusement park and visiting most rides at some point not just the rollercoaster)
i wish nothing bad on anyone but it does help knowing others have felt what you feel. I have been vigilante about stopping anything (pain pills) that don't work after giving them a good try. I have a cabinet full of half full scripts. I have issues with sleeping so at times I will take one pill before bed...just to put me to sleep.
I really do try to get up smiling everyday. I just reread my original post and it sounded so whiney and frustrated....I guess I need to work harder. I dropped off my methotrexate script yesterday...I've read some bad stuff about it, but I have certainly also read some good stuff, so as soon as I work up the nerve I will have my first pill day.
hi b ... didn't sound like whining to me ... poor hubby had an afternoon nap an woke to find me balling my eyes out - what he got was whining! LOL
best advice i can offer re: new meds ... try it & see how it goes! youv'e done your research so keeping an eye for side effects is easier ... one day at a time!
Why do you say you need to work harder? you sound pretty grounded ... give yourself some credit!