Hey all bare with me thru this mess- I need your advice
October-
I had a high IgG - showing polyclonal gammapathy- this is found in certain cancers but usually, chronic inflammation in autoimmune diseases, virus's, and infection.
I was being seen by a doctor due to my "Fatigue, weight loss, Malise, Low grade fever, headaches, achy wrists, ankles, knuckles, random rashes (that don't itch just appear and disappear within hours, and red hot palms" this all happened after a premature delivery and death of my infant due to placental abruption.
November- Had ANA 1:80 speckled no autoantibodies found- took myself to rheumotologist
April- ANA 1:160 speckled no autoantibodies found BUT
Dr Proposed it was Lupus maybe - put me on plaquenil- though I don't really meet 4 out of 11 criteria...... as you can see my symptoms above.
I stayed on the medication
Last week I went to Cleveland clinic for 2nd opinion. because well this is autoimmune- and extremely controversial I know this as a nurse......
Last week 2nd opinion..
he did an ANA by EIA - it was 1.2 negative .. positive is greater than 1.5
I have also tested negative for the following Antibodies
SM,RNP,SSA,SSB,Centromere,Scleroderma Ab, Jo 1 antibody, Ribosomal, Chromatin,thyrogloblin; they also checked for antiphospholipid autoantibody-negative
my IgG is still high but not as high as before.
my CRP 0.1 same as before
Sed rate was 15 - which is negative back in April it was 29
I don't know which doctor to go with? Do I stay on the Plaquenil or not..... theres so much controversy-
opinions well appreciated- I obviously understand and know its ultimately up to me .
Have you noticed a difference on the Plaquenil? Does it help with the fatigue or lessen the severity of aches/pains or the frequency of them? If you feel the Plaquenil helps, even a little bit, I would continue taking it. My blood work has been bouncing all over the place, but my rheumy put me on the Plaquenil and then my labs showed normal last January (normal sed, CPK, no antibodies, normal chemistries, etc.) and now they're indicating lupus (suddenly I have dsDNA antibodies?). But, since the Plaquenil helps a lot with my fatigue, I stayed on it even though I spent several months being "normal". Don't go just by labs, there's always room for error in labs--wrong blood sample, bad blood sample (cells could have lysed, coagulated, etc.), human could have botched the test somehow, computer or machine could have botched the test or results, the error possibilities are endless. Or, you just have blood that likes to give whacky results that don't match up with our physical symptoms. It could be that your body is still in the process of developing the antibodies and they just aren't being picked up yet. Listen to your body and go with your gut because things can always change.
Hi. I am an RN, diagnosed within the past year with Lupus at the age of almost 70. Plaquenil has helped me tremendously. I found a recent research article reassuring: Published April 15, 2013 in Journal of Rheumatology: "The early protective effect of hydroxychloroquine on the risk of cumulative damage in patients with systemic lupus erythematosus. ' Hope this helps.
Wow your story sounds so close to mine. From what I understand (which is not a whole lot in this disease) there are a few protective effects of Plaquenil. I have chosen to stay on it. My doctor made it clear it was my choice. I have been on it for a year. I have noticed and these maybe coincidental: less joint pain and swelling, better good days, not one UTI infection or yeast infection (used to be 5-6x a year for both) and deeper sleeping when my joints feel good.
The hardest part about having lupus is you have to decide what your normal is. I can not achieve my normal without the medication.
Remember it is okay with what you choose. It is your doctors responsibility to help you not make a choice that would hurt you. If the doctor is okay with your choice either way then make your choice with confidence.
Lupus has so many mysteries and I'm sure you know that autoimmune disorders tend to look similar and overlap, as far as symptoms, making it even harder to get a definitive diagnosis. 11 years ago, my ANA was negative, but a skin biopsy along with other symptoms lead my doc to the diagnosis of SLE. I have been on Plaquenil off and on over the last 11 years and just this year had a small effect on my vision. Even with that, my Rheumatologist still refers to Plaquenil as "rather benign". So, in an effort to reduce my symptoms and feel better, I am still taking it (this time for the last three years). I hope you get an accurate diagnosis and appropriate treatment!