c3 , c4 Complements and anitbodies

[kiley]

Hi-
I have mild SLE and recent blood tests showed that my c3 and c4 complements were very low but none of the antibodies were elevated. Anyone else ever had this combination? Everything says that kidneys are at risk if complements are low AND anti-ds Dna is elevated.
I haven't been able to find much info. on what it can mean to organs if ONLY complement levels are off. My rheumie sounded a little concerned about tissue damage.

I was dx.ed before any antibody (other than ANA) was detected. Is that unusual? Eventually, anti-dsDna and anti-smooth muscle ab were slightly elevated; only once though.

I know we're not Dr.s ( though y'all are experts, IMO) and I'm curious... since my anti-dsDna is normal, aren't I ok for now?
Thanks for any info. you can share!
Kiley

[Lily]

Hi kiley,

Personally I hate the term mild Lupus because any sort of lupus can change over time, either going into remission or worsening!

I was diagnosed with low C3 & C4 complements (worsening over time) , positive ANA, no other antibody tests positive, long history of blood, protein, casts in urine. My final diagnosis was SLE & Sjogrens, meeting a lot of criteria for both.

Had we waited then yes maybe I would have developed other antibodies, who knows, we are each individual. In my case even though I didnt have Anti-dsDNA I had confirmed kidney and brain involvement (CNS Vasculitis) at the time. So the blood tests are a guide, not set in stone and what they indicate isnt set in stone either. Other diagnstic tests and symptoms are what tips them off that more is going on a lot of the time.

If this C3 & C4 is a one off then following it is a good idea, but who knows next time its tested it might be fine, that can happen. Try not to worry and they didnt worry with me until they had other evidence of organ involvement and the C3 & C4 kept going further down. Slightly under norm is not usually anything to be alarmed about. But I'm saying that without knowing how abnormal your results were and I'm not familiar with all the aspects of your disease either

I think the best advice I can give for someone in your position is to make sure you get periodic urinalysis to check your kidney status. Most good Lupus docs would do that anyway on follow up visits. That way if something does change or worsen and it involves kidneys you will know and can start treatment to stop it in its tracks.

It is possible if you have severe skin problems to have a deficiency of the complements in lupus too, so if there is no other evidence of organ involvement (and its been checked) then maybe thats why you got that result, I'm only going on what I know to be true when on my own diagnostic journey. If your Anti-ds-DNA is negative now, thats good, but do keep a check on those kidneys.

We should all report what goes on between appt to docs that way they can judge if disease needs more aggressive treatment or whether its under good control.

What meds are you on currently - Plaquenil?

love
Lily

[Pollyanna]

Kiley,

Sorry I really can't help you, but wanted to say welcome to the boards and hope you keep posting! I'm sure more people will come along who are knowledgeable about your questions than I. Someone like Lily! She gave you some very good information. Take care!

Pollyanna

[peonyprincess]

My C3 and C4 along with C10 complements have been "fine", however, my Sed Rate (ESR) and my ANA have always been elevated. My ds-DNA has come back negative...always................go figure. The on ly thing that has changed is the pattern on my ANA. I have gone from speckled to homongenous, I guess that is to keep everyone on their toes. I meet a substantial amount of the Lupus criteria as well as alot of the other autoimmune diseases. The docs have determined either thru their expert knowledge or a coin toss that Lupus has always been my primary. While the other illnesses are attempting to have a horse race to get to the fore front, Lupus is hanging tough.....hmmmm wasn't that a song once.....OMG I am telling my age!!!

In my opinion you either have Lupus or you don't......it's kind of like being pregnant............you cannot be halfway. Some physicians have different terminology which I find very confusing not only to those of us with a medical background but to those without. One's interpretation of a lab result could seriously change the way a disease is treated. Thus, posing a hardship on someone who has this "mild" Lupus which could very well either tittering on remission to a full blown flare. I find it obscene to class someone like that. My Lupus was in remission for about 13 years.... , THEN it decided not to be so "mild" and attack me when I wasn't looking........sneaky little sucker anyway!

What I find oddly humerous, and yes, I have always stated that my humor is a little bent if not warped, is that my "mild" Lupus as become, SLE/DLE, APS, COPD, CHF, OCD, Depression, Anxiety, Gerd, HTN, TOS, Sjogrens, Fibromyalgia, CFS, Raynauds, the list goes on and on and .....................I am on a first name basis with all of the pharamisist at Walgreens. Unlike the dingdong on myspace, I don't just have maracas, I have an entire band with all of my pill bottles. Oh well, have to find my amusment somewhere.

The long and the short of it is, once you have Lupus, it doesn't mysteriously go away and be cured. You will always have it to some degree or another. Man that is depressing isn't it???? Just wake up every morning knowing that this is another day that we get to enjoy the beautiful sunrise, sunset, family and friends. While some days may be worse than others and there are days that everything makes us mad or want to cry, we are still here. The other option is death and in my opinion that is not a viable option. I am not a quitter.

Nancy

[Clare.T]

Welcome to the forum !

I should think it's fairly common to have only an out- of -range ANA as a blood abnormality, but there would have to be a very convincing total picture to get a lupus diagnosis if there was nothing lupus specific or extremely weighty.

Chronic or acquired or congenital complement deficiencies causing lupus like illness is apparently very rare but that doesn't mean it isn't your problem. There needs to be a family history or repeated low readings.

There are no hard and fast rules about lupus. People without anti ds DNA antibodies can have CNS or kidney involvement. Not everybody with skin lupus is photosensitive, so I read recently.

I agree with Lily about worry about organ involvement - just get the right tests done regularly.

Lupus isn't necessarily progressive.

Try not to worry about the future.



Clare

[kiley]

Hi-
Thank you everyone, for the wonderful info., personal stories and welcomes!

My rheumy is sure that I do have SLE (though we know they are sometimes wrong). Both c3 and c4 have been slightly low in the past but on my last visit were precipitously low and had my otherwise unflappable (uncaring?) rheumy, concerned.

As I said, some of my antibodies eventually became elevated and Clare, you explained it perfectly; it's just as I had always thought but wasn't sure. I still can't figure why I got a dx. BEFORE antibodies presented, but no matter. I guess it's unusual but it's interesting to know others had the same experience.

Mainly, I wanted to know if it's possible to incur damage while antibodies are under control. Lily, from your story I now know that it IS possible and I'll stay on my med.s (plaquenil and prednisone) and make sure I'm regularly monitored with blood/urine tests (I'm not always good about that and neither is my PCP).
BTW, I do hope YOU'RE faring better now and am really sorry that you had such serious complications!! I am grateful that I'm still in the"mild" category, but y'all are kind to recognize that it doesn't feel mild some days!

I am not scared with this knowledge though. I'm not a worrier but I like to be educated, so I really appreciate your thoughtful responses and helpful advice. I had done many on-line searches and couldn't find those answers.

Thanks again and best to all!!
Kiley

[alobreto]

Hi, Kiley!
I don't have any info to add on the tests as you've been given excellent information and advice. The key to living as well as possible is in monitoring what is happening and getting it treated as soon as a problem presents.

I don't think we've met, and I'd like to extend a warm welcome to the forum! You will find factual information here and many personal stories on how to live life better with lupus. Those are things that can be hard to find on the internet where accuracy isn't always paramount.

Again welcome! I wish you well!
Angela

[kiley]

Hi Angela,
You (and Pollyanna, Nancy, et al) are so sweet to welcome me!
Yes, I sure did get excellent info. here!! I hadn't been to this board in a long time but am glad to be back.
I don't know what we all did before the advent of the PC! I think I've gotten more information and direction about SLE from message boards than from my Dr.s.

Hope you are well, and nice to meet you too!
Kiley

[sam101360]

OK I must be an oddity.

Low C3 and C4 twice in 3 years and a YoYo of Muscle CPK's and INR. Never had positive anything else...

Have had a positive Skin biopsy...twice for SCLE and wide Lupus Band. Both lesional and non-lesional.

I have benn dx with SCLE, SLE and APS and systemic arthritis, worsening as time goes by.

I have tried Methotrexate and Imuran with very bad results. I am waiting for approval for rituxan and will continue to push.

I had CNS symptoms when on imuran which really concerned rhumy, all has been stable since been off imuran.

Stephanie

[Trish10]

I have had problems with my C3, C4 levels for about the past year, always low. My rheumy knows I have inflammation, just not where. My last blood work, he did everything. All other test results were WNL, except, some abnormalities in my urinalysis and CBC, which he did not seem overly concerned about. He is puzzled why the C3, C4 levels remain depleted, despite the addition of prednisone.
How long can you have low C3, C4 levels? Is it doing permanant damage? Have never been able to get a straight answer on this one.

[alobreto]

Complements are blood proteins that are vital to the overall inflammatory response to infection or trauma. They are often used to monitor how successful treament is in lupus or other disorders.

When the complement levels are depleted with a low reading, they are not causing damage. They are used as an indicator of the strength of your inflammation response system.

Low complements mean that your body is not as able to respond to infection or trauma.

When an inflammatory response such as a lupus flare begins to come under control, the complement levels will rise.

Hope that helps some!
Angela

[Raglet]

usual rule of thumb is treat the symptoms and not the labs. If you feel ok and your doctor is still smiling, then it sounds like things are doing ok.

if you're worried though, maybe ring your doctor and ask for a clarification about what your test mean.

cheers

raglet

[dudley]

Hi,

My body likes to fluctuate. Times my c3 is very low. Next time it is my c4 is very low and c3 normal. next time C3 and C4 are fine and C50 is very low. Doctor is to the pont of not looking at them to much anymore. My kdneys are fine. I am on cytoxin.

Every ones body is so different.

Elaine

[kamkam]

hiya all

Wondering if you guys can help me out, my c3 and c4 are both higher tha average, does nayone know what that means?

thanks