Hello everyone, sorry I have not been participating much…I have been feeling pretty yucky. My Rheumy’s office called this week and said my C3 and C4 labs were low and that I needed to increase my plaquinil. Is this “normal”? I thought the plaquinil would keep things from progressing… I am also confused because when I got a hard copy of the labs, my ANA was neg. this is a first for me …does that mean I do not have lupus? Does the C3 and C4 mean my kidneys are involved? The labs also showed a low CO2 and ALP…
Hi TJ,
When an ANA turns fom positive to negative it's showing that the Lupus is being treated with medication like "Ann" stated, the plaquenil is working and if so this is why it's been upped to help even more....that does'nt mean to say you have'nt got Lupus anymore...also low levels of iron can cause low levels in C3 AND C4.
Carbon Dioxide (CO2) When tested, irregular values in these “electrolytes” can indicate trouble with your body’s salt/water or acid/base balance. Dehydration, vomiting, medications and kidney problems can cause these health issues.
Alkaline Phosphatase (ALP) These are proteins and enzymes found in the blood. Abnormal levels of any of these tests can indicate liver damage or liver disease.
The link below is an indicator of what the results maybe caused by but you do need to see your specialist and ask for sure what is going on plus don't get worrying yourself and taking what anyone says for the truth as we're not doctor's to diagnose as you already....we try and help best we can.
http://seattlelabtest.com/lab-tests/product/chemistry-panel-16-esse...
Terri :)
Thank you both for responding. I think I panicked when my neurologist bumped up my next appointment a week. I figured it must be bad news 
I see both my rheumy and neurologist Friday and I’m sure they will cover all this… Friday just seems like a long time to wonder lol. I am very thankful for this group and the experience behind the advice. While I wish none of us had to deal with these issues, I know you all truly understand. I don’t find that with all my doctors and am very private about my disease with friends because it is so hard for them to understand. It’s nice to know I am not alone.
Hi TJ,
Your welcome and seeing your specialists on the same day, hopefully things will be sorted out...Lupus gets me down and i get depressed but i learnt to except it quite a while back as it's not going to disappear...i just wish you the best of luck and please update we on your discuission when you know what's going on.
Terri :)
TJ said:
Thank you both for responding. I think I panicked when my neurologist bumped up my next appointment a week. I figured it must be bad news :( I see both my rheumy and neurologist Friday and I'm sure they will cover all this... Friday just seems like a long time to wonder lol. I am very thankful for this group and the experience behind the advice. While I wish none of us had to deal with these issues, I know you all truly understand. I don't find that with all my doctors and am very private about my disease with friends because it is so hard for them to understand. It's nice to know I am not alone.
Well I would love to say I have a clearer understanding after my appointments today but I am even more confused! I have had a horrible headache on and off for two weeks but the las two days it has been at its worst. When I went to the Rheumy this morning I could barely function it hurt so bad. Needless to say I did not ask the questions I wanted to. She put me on a daily dose of 10mg prednisone and switched me to Lyrica but did not seem too concerned with my labs. This afternoon I had my husband go with me to the neuro. because I was still hurting and knew I would need him to help me ask the right questions and so he could be my memory bank ;). Bless his heart, I think he was ready to start using some ### words he was so frustrated. Basically she wanted to see me because my immunologist was really concerned about my increased weakness at my last visit and he called her. She said my low c3/c4 was nothing. They have talked about trying Ig infusions but they do not have the lab results to justify it to the insurance company…even though they both feel it would greatly help me. That is when my husband got upset, which pretty much ticked off the doctor. I totally understand his frustration, he has to watch me daily hurting and unable to do so many of the things we once loved to do, and I know he would do anything to help me. The neurologist ended the appointment by telling me she felt I needed to be in 60-80 mg of prednisone, she wants me to take Elabil instead of lyrica like the rheumatologist prescribed. How do you handle it when your doctors don’t even agree? Who do I listen to???
I feel like I gained nothing, wasted time and money, and am nowhere closer to getting better. And neither one addressed my killer headache! Ugh!
I asked my neurologist if I should continue with the Pilates I have been doing for the past three months or if it was actually making things worse and she said " no keep doing what you can, don’t push yourself to the point that you are hurting or exhausted, but try to do 15-20 minutes at a time." Then she said " I am glad you are exercising, if you were not, you would not be able to walk from this chair to that exam table even with your cane"
I am 41 years old, until 4 years ago I was very active. Now I walk with a cane, and not very well. It makes me sad to think about where I will be 4 years from now…
Hi TJ,
I am pleased you have one loving husband as we all need someone close to we, my hubby is the same if i mention things and forget he's there asking questions afterwards or bringing things up which i've totally forgotten.
I know it's hard to deal with and so many can reflect on how our bodies worked a few years back but the tiedness and weakness Lupus causes we can soon catch up on some members.
Where your neuro is getting involved with your meds with your rheumo...mine won't, she just treats me in the neuro field of work and that's it but if i need anything looking at furthur she never hesitates.
Your rheumo seems someone who's not to bothered by how your speaking, if your not satisfied in anyway always try someone else for a seconf opinion.
Love Terri :)
Ann, thank you. I need to keep things in perspective. I love the massage idea 
I also feel like you in that I would rather start with the low dose and go up if needed
Terri, you are so right. I could not do this without my husband! Also, I think I will call my rheumy Monday to see how she feels about changing the lyrica. It would be one thing if I felt my doctors were working together, but I don’t. I want to be sure she agrees with the change.
Thank you both for the support!
Hi TJ,
Lyrica is used for nerve damage, epilepsy and fibro plus it's an anticonvulsant (anti-seizure) med...so i would sort something out to help you better if you can and if you don't have epilepsy why on earth stick you on it.
This gets me mad everytime i hear about people or members being put on epilepsy meds for other reasons because the specialists know that seizure meds can cause seizures.
I wish you the best of luck and update we please on what they finally decide.
Hugs Terri :)