Does anyone know if a drop in C3/C4 serum complement levels, while still within "low normal" ranges can be a concern for SLE?
I've got "incomplete lupus" or UCTD for now but my rheumy is good about still taking labs and looking to see if I'm moving into a specified category. I'm on some hefty drugs because he calls my UCTD a "lupus-like" illness, so I'm on 20 mg of methotrexate weekly as well as prednisone. Thankfully, I haven't seemed to have developed any major organ involvement except that I do have some minor seizures which are controlled with anti-seizure meds.
Even with the maximum dosage of mtx that my doc says that I can take for my weight/size, I seem to be in a flare. He's out of town this week and I've only got partial lab results back right now and I've learned that I've had a drop in my C3 and C4 blood serum complement levels. I believe they're still within "normal" range but I'm thinking that a drop like this (despite being on mtx and prednisone) might be a warning that I'm getting some real SLE and/or kidney activity adding to the mix. My Complements are at C3=93 and C4=19 - which are down from 131 and 22 just 2 months ago.
I'll definitely talk w/my doc when he gets back next week but just wanted to see if anyone here has any experience with this.
(I am also C-ANCA (anti-pr3) and HLA-B27 positive which complicates things even further!)
Thanks a bunch!
I have a DX of SLE. I know that when my complement levels drop, my Dr. takes action, usually changing my meds, even if the levels are still within normal (In my case, just barely normal usually). The ANCA that is positive is usually associated with Wegners isn't it? I would definitely keep a journal on how you feel from day to day, and, watch for signs like swelling in your feet and ankles, puffy swollen eyes, sudden weight gain, foamy urine, blood in urine. Be extra careful on your sodium intake, just in case, and be sure to tell your Dr. if you notice any of the above things when you talk to him next week. Until then, take care, try not to stress and I wish you all the best !
The doc that was on-call yesterday bumped my prednisone up some more because of my achey symptoms & fatigue - until my regular rheumy gets back. You're right, the c-anca is associate with Wegener's, but my score is a low-positive (like most everything else I have and my rheumy says that he occassionally sees it in some SLE cases (<5%...but I'm just in a weird gray zone. The HLA-B27 is also seen in Ankylosing Spondylitis..which I don't really seem to be exhibiting symptoms for. This autoimmune stuff is so incredibly widespread! I do keep a journal but I'll watch out for the sodium intake. Thanks for the help! I really do appreciate it!
Well, the doc said that my results were absolutely normal (despite the 35% decrease in C3 complement) and even took me off of the increased prednisone dosage and I'm now back on the usual 5 mg with the 20 mg of mtx. I'm still in a load of pain ...he thinks that I may have some fibromyalgia mixed in with the autoimmune now. What next??? Funny thing is that I don't seem to have any classic trigger points...meaning that I don't ache when pressure is applied to my muscles/trigger areas. I do ache in the joints and some muscles, though without pressure applied.
I'm stopping the Mobic and starting Celebrex tomorrow. Anyone have any advice ???
It is my understanding that people with fibromyalgia are frequently given medications to lessen the awful pain. If the Celebrex does not make a big difference I would for sure tell the Dr. about it. As for a 35% decrease in complement, even if it was still in the normal range, I think you should keep a close eye on your symptoms, just incase. Did your Dr. tell you what could cause such a drop, other than Lupus? Take care
I really just spoke w/ the assistant who read me the dr's assessment/instructions. He just said everything was "normal". I'm not convinced that it's fibromyalgia because I've always lacked any tender/trigger points but my joints ache terribly, so there is defintely arthritis going on...so celebrex should be in the right neighborhood (although I was on Mobic which was also an NSAID) I'll keep a watch on the complements. From what I understand with UCTD, fibro is not uncommon along with autoimmune, too. I'm getting a bit anxious with the pain, especially when I look at the bluish vessels on the backs of my hands bulging (very attractive and I wonder why these darn labs aren't coming back with anything definitive because I can definitely tell I'm hurting and this isn't normal! Sorry for venting but I'm having a moment...deep breath....ok...
The celebrex is supposed to take effect in 7-10 days and then I should call back if no change. Today was a bear. I suppose I'll dose up on the pain meds until then which I don't like to do but I'm not opposed to it given the alternative
Thanks for your help. I just needed to vent today.
Vent away That's one of the things this board is here for. Sounds like you have a decent plan for getting to day 7, which I hope comes quickly for you. Labs are strange creatures sometimes. There have been times I have felt beyond awful, only to be told "labs are fine", and other times when I felt great, and the Dr. says "wow, time to do something, your labs are awful". I don't yet understand how that can be, I just know it happens, and it's pretty darn frustrating Hang in there!
Juat a quick word of warning from my own experience. Here is the short version: Celebrex has a sulfonamide in its chemical makeup and many, many people with lupus become allergic to sulfa. That happened to me, much to my surprise, and it caused me to also be allergic to Celebrex.
The long version:
When I started having odd symptoms - just two oval non-itchy spots on my forearms and swollen ankles - the first doctor I saw was a GP who started me on Celebrex. I felt lots better, but in the course of the next two weeks, those two spots on my forearms multiplied until I looked like I had leprosy from my fingertips to my elbows. My hips, knees, and ankles took turns swelling and my legs hurt so badly that I could stand up for only 20 minutes before I had to sit and elevate my legs. I kept written notes of all of this and gave copies to the next two doctors I saw: an internist who got bloodwork and told me I had lupus, then a dermatologist who biopsied the "leprosy". Then I was sent to a rheumy who read what I had written and asked if my symptoms had worsened after I was on Celebrex. YES! I hadn't realized that was the case until he asked. Once off Celebrex and on Naprosyn, the leprosy went away, the pain and swelling went away, and I was fine. Still had wonky bloodwork indicating lupus, but I could work again.
If perchance your symptoms have worsened since beginning Celebrex, the Celebrex could be the culprit for you, too.
Thank you Barbara, I'll watch for any changes. Question - did you have the lupus dx before the celebrex reaction or not until afterwards?
I'm already having puffiness in my wrists, ankles, knuckles and aches in hips, elbows, etc. (the reason for changing from Mobic to Celebrex) but I don't have any skin rashes (thank goodness!)
Thanks and good luck!
I was already on Celebrex before the lupus diagnosis - by about 10 days. I was well into the allergic reaction stage (which neither the internist nor the dermatologist figured out) when my blood work showed an elevated ANA and double-the-normal sedimentation rate. About 6 weeks after being off Celebrex, my ANA was even higher at 1:600 or 1:800, I've forgotten which, and my sed rate was almost normal.
Two years before all of the odd symptoms I became very tired, but chalked that up to working full time and having 2 teen-aged sons. Maybe it was lupus then. I've read that many lupus patients have it for 6 to 10 years before getting an accurate diagnosis.