C3, C4 tests

[Trish10]

My C3 and C4 tests have been abnormal for over 6 months, low.

I understand that it is a marker for infammation, but can they pinpoint where? How long is is possible to have low levels, and what damage is it doing? Are antiinflammatories the only answer in treating this?

I'm just wondering what/if I can do anything to turn this around, or do I just have to wait it out.

If anyone has any insight, I would appreciate it.

Thanks

[helloos]

Hi Trish.

I cannot be of much help except I know that it can tell you the progression of the disease or a way to follow it. I don't think anything can be done from you to bring that to normal. I think when they do the compliment from that test it give a little more information as to why it is low, etc.
I am interested to hear the others who have more knowledge of this.
But definitely a question to ask your doctor and post his reply here !

[Clare.T]

All the test sites pinned in the post at the top of the section have information about Complement.

Compement levels can get depleted when the immune system activates to protect our bodies against perceived threats,whatever they are, whether external like bacteria or mistaken autoimmune activity like connective tissue diseases. Inflammation results.

So depleted levels of complement can be used to help diagnose lupus or measure disease activity.

Chronic low levels, deficiencies, of certain complement can cause diseases like lupus. This is an unusual congenital state

I dont know if the use of inflammatories will correct low levels, but I shouldn't think so because NSAIDs aren't disease modifying. NSAIDS will reduce the symptoms of inflammation temporarily but not the disease process itself.

However complement levels can be used to indicate if therapy is succeeding.

Other tests maybe needed to see if the inflammatory symptoms are being caused by lupus or by say, an infection or perhaps another sort of immune system activator, a medication for example. Although having said that, I don't think low complement levels are usually found in drug induced lupus

As to damage, actual damage could be done by uncontrolled disease activity. For example if lupus is causing discoid lesions there's a risk of scarring and maybe disease progression to a more systemic form, or risk of internal organ damage or serious incidents. Also an increased risk of infection from other sources. Damage also to our lives because of the effects of being ill.

I have the impression that it's usually the more severe cases of lupus when complement is depleted, such as vasculitis or kidney disease.

So if complement is always depleted, it suggests the need for disease modifying medicines, whatever is needed including immuno susppressants of one sort or another.

This is only my understanding of the role of complement in lupus from what I have read

Trish I hope you have a doctor who knows about lupus.

Feel better soon

Clare

[Trish10]

Thank you Paula and Clare for your comments and information.

I do see a rheumatologist, have for years. I have been on Enbrel for a number of years (started it when he didn't know what else to do with me). Recently switched to Humira. I've been seeing a new rheum for about the last 4-5 months (new associate in the office). I was actually glad to see someone else as I thought he might have some new insight. He is recently out of fellowship and also has a PhD so I feel comforatble with him. I asked him about the low complements, he said it was a marker for inflammation, and from his exam it appeared that my knees and elbows were affected.

I've had other adjustments made to my medication regimen as well, but still low complements. Also recently had 3+ protein in urine, 24 hour urine collection came back fine. But I was nervous.

I have been on 15 mg of prednisone for months and months, probably since the discovery of the low complements. Still no change in blood work.

I know I'm having a flare, have been in one for months. Just can't seem to kick it. I increased my prednisone to 20 mg over the last couple of days, and I actually seem to be feeling a little bit better. Most notably, my pain level is tolerable. My doctor gave me permission to make these minor adjustments on my own.

I was just wondering if there was something that I'm missing that I could do for myself. I've learned a lot from reading these boards and I want to do everything that I can to keep myself feeling as good as I can.

Thanks for your input and support.

[Lily]

Hi Trish,

As I understand it you are diagnosed with Lupus already? Does your doc have you on Plaquenil?

As Clare states about C3 & C4 levels they are often a sign of active disease. I'm just wondering what besides Enbrel they have you on for your Lupus? Do you have Anti-Ds-DNA antibodies?

love
Lily

[raggedyann1]

Trish,

did you complements start to come back low after you switched to humira? Some of the newer biomeds like enbrel and humira are known to aggravate lupus in some patients. Also neither the enbrel or humira will suppress the lupus in your internal organs at least not as successfully as imuran and cellcept. Imuran and cellcept are more of a total suppression versus the bio-meds that suppress specific types of cells or markers.

Karen

[Trish10]

Thank you so much for the replies.

Yes, I have already been diagnosed, ~8years ago, but had symptoms as far back as 12. Was originally labeled with UCTD. The Lupus came a little later with more blood work. A positive anti-DNA. I also have morphea and was checked for systemic sleroderma. At the time the results were negative, just morphea. Then the label became MCTD. As time goes on, I wonder what else they can tag me with. I do not tolerate the cold at all and my fingers get blueish and will numb at times in the cold.

I am taking Plaquenil. I have been on it for ~12 years continually. I have tried methotrexate, no success. After I started the Enbrel, I started to see some relief after a couple months. I currently take 15-20 mg prednisone as well.

Is a Anti-DS-DNA similar to an anti-DNA. I'm not sure if I have ever had that checked.

The complements were already low when I was switched to Humira. My doctor thought that because I had been on Enbrel for so long that maybe it was losing its effectiveness. He thought that switching might bring back some relief. It's been about 2 months that I have been on the Humira.

At my last visit about 2 weeks ago my doctor did start to talk about some of the stronger meds, I believe he mentioned Imuran. We'll see.

Trish

[raggedyann1]

Trish,

the anti-dsdna is the double stranded of the dsdna. I would hope your doctors have run that test in the past. It is usually part of the panel that has the rnp, ssa, ssb, and a couple others. why don't you ask your doctor for copies of your chart including all the lab work. My doctor doesnt run the panel with dsdna or my complements very often because they aer not an indicator of disease activity with me.

Karen

[Lily]

Hi,

Yes it might be a good idea to get copies just to see what bloodwork they have run on you now and in the past. Sorry I missed that you have now switched to Humira, Enbrel can bring about Anti-dsDNA in some people who never had it before which is why I asked.

It's a shame that Methotrexate didnt work for you, its especially good for joint problems many of our members have found.

I have good relief from Imuran though (in addition to Plaquenil), its been very helpful in controlling my Lupus overall, I have kidney and central nervous system problems and thankfully its helped a lot. Starting slow was necessary though and building my dose up, I dont think I could have tolerated it otherwise. I also take an anti-inflammatory - collectively they seem to work well for me, we are all very different in what works and what we can tolerate.

Hope you find whats best for you and will get this under control. Its a good suggestion to try and familiarise yourself with the meds and blood tests, so that you can help make informed choices together with your doctor.

love
Lily