Latest C3 & C4 results. : I might be having a fog... - LUPUS UK

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Latest C3 & C4 results.

katidid profile image
13 Replies

I might be having a fog moment, but at my latest visit my doc told me that my C3 & C4 complement levels had improved significantly. I *thought* he said this was because they have been coming down steadily over the past 5 months. But, when I looked it up, low C3and4 are associated with disease activity, not improvement. Maybe I started low and am going up and he just read it to me backwards.

I'm really confused. We use this as one of my primary measures to record my flares and now I'm not sure which way is up or down (pardon the pun!).

Have you experienced this? What have your docs explained about C3 and C4?

So confused ....

13 Replies
Fennella02 profile image
Fennella02

Low C3C4 is indicative of disease activity. I think it's poorly understood - my GP doesnt understand lupus monitoring tests at all. I'm teaching her!

misty14 profile image
misty14

Hi katifid

As Clareb rightly says complement 3 and 4 are indicative of what your immune system is doing. Higher means it's recovering maybe thanks to your treatment as they're usually low prior to diagnosis. Mine were!.

Usually the inflammation markers CRP and viscosity are used to check disease activity not complement each time !. Is this your GP or consultant. ?. Certainly different way to do it , hope your less confused . X

katidid profile image
katidid in reply to misty14

It's my rheumatologist. I'm on an every 6-8 week blood draw panel right now. Used to be more often when I was less stable and my organs weren't doing so well. We run all the basics and the comprehensive panels for autoimmune activity.

It's been a good thing. We have lots of comparison data to look at. So far, two indicators have improved. I think it's becuase I just hit 10 months on Hydroxychloroquine and have stayed on a low dose of steriods. Unfoturnately the other meds we tried failed.

If there is one thing I admire about my doc is his insitance on tracking and reporting everything. Most doctors just blow people off. He really cares and always wants to help.

Very thankful for that.

misty14 profile image
misty14 in reply to katidid

Hi katydid

I'm sorry you've been having a rough time with lupus and symptoms but so pleased you have a good Rheumy who is looking after you so well. He/ she is worth there weight in gold , keeping such a close eye on disease activity and glad you have good blood comparison data to look at and things are improving for you. How are you getting on with steroids?. What dose have you got to?. It's such an achievement to be able to lower them. I've got to 7.5 mg but it's been a struggle over 2 years!. It's great that you obviously have a fab working relationship with your Rheumy and you've found treatment that works. Long may that continue for you. Keep us posted. X

katidid profile image
katidid in reply to misty14

Hi there! My current dose is 8mg per day. It’s the lowest we can go before I “fatigue out”. Kind of a term I use to describe basically not being able to move or just plopping down out of nowhere :/

I wish I could get off them, as I have put on about 20 pounds (how many stones is that?) and have what they call “moon face”. Oh well. They keep my upright and when I do feel well enough to exercise the combo of the two does help with energy levels.

I’m curious, tho, if it’s possible that your body gets used to them. I feel like they are less effective as time goes by. I’m at about a year now.

Have you experienced that?

misty14 profile image
misty14 in reply to katidid

Hi katidid,

I do undrstand how you feel about the steroids. They are a double edged treatment and I too have a 'moon face'. Not flattering is it?. I'm stuck on 7.5 mg and you pose an interesting question about effectiveness as our body's do get used to doses!. I m not really sure of the answer , have always thought that it was the illness being a symptomatic and not controlled enough rather than our bodies being used to the dose !. I hope others on here can answer it better as its a great question. X

katidid profile image
katidid in reply to misty14

Paul_Howard do you have any info on the above question re: long term steriod use? thanks!

Paul_Howard profile image
Paul_HowardPartner in reply to katidid

Hi katidid ,

I'm afraid I do not know whether taking steroids over a long period decreases their effectiveness per se, but you may be interested to read about adrenal insufficiency.

After prolonged periods of relatively high-dose steroids, your adrenal glands stop producing cortisol (natural steroid). During periods of stress (emotional or physical) this can then mean that you may not get as much steroid as your body would naturally produce (sometimes up to the equivalent of 100mg or prednisolone a day during periods of severe stress).

As I am not medically qualified I couldn't say whether this may be what you are experiencing, but it just may be of interest.

katidid profile image
katidid in reply to Paul_Howard

I’ll look into adrenal fatigue and discuss it with my doctors. Thanks!!

PMRpro profile image
PMRpro

I'd clarify it with the GP - since YOU know lower is bad, higher is good.

It wouldn't be the first time that a GP had told a patient "test x is much better" when in fact the figure had increased by nearly 50% and was an indicator of increased inflammation. When challenged they said "it's only a small increase..." and really couldn't understand they'd got it TOTALLY wrong.

That why the lady this happened to now always gets her own print-out.

Paul_Howard profile image
Paul_HowardPartner

Hi katidid ,

Here is what 'The Lupus Encyclopedia' by Donald E Thomas Jr, says about C3 and C4;

"Your rheumatologist will usually check a blood test called complement levels, particularly the third and fourth complement levels (called C3 and C4), each time you get labs done. Complements are very important proteins that play an integral role in the immune system. C3 and C4 will sometimes decrease when the immune system is particularly active in someone who has SLE. If someone is born with a deficiency in some of these complement factors (especially C2 and C4) they have an increased risk of having SLE."

katidid profile image
katidid in reply to Paul_Howard

I put in a call to his office and they are going to pull all of my historic bloods. We've been watching the patterns for about 2 years, so that should give me a good idea of what direction. I know that both were at the lowest end of the range and that my C3 (don't remember what he said C4 was) had gone up almost 30 points since March and that the graph shows a steady increase, no ups and downs.

I'll take it as good news. Any progress is better than none!

katidid profile image
katidid

Thanks all! Next time I visit him, I'll ask him if my C3 change from 88 to 111 (as an example) is the *right* direction. I think he may have just been saying it out loud backwards.

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