Author Topic: Complement C3/C4?  (Read 2250 times)

PrincessLeah

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Complement C3/C4?
« on: June 18, 2010, 05:21:10 PM »
University rheumy tested this for me as well, in a search to try to pinpoint what my problem is (due to negative bloodwork/negative lip biopsy).  They're still thinking possible weird allergic reaction --

Has anyone here had these markers tested?  Mine came back normal (sigh, yet again), in addition to a normal CRP, ESR, ANA, etc...

Oh, and I don't have cancer or HIV, so score one for me!

PL

inga

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Re: Complement C3/C4?
« Reply #1 on: June 18, 2010, 06:00:37 PM »
I have a very high ANA.  Low C4 off and on.  Elevated CRP off and on.  Sed rate is usually normal.  I have negative Sjogren's bloodwork, that is negative on SSA and SSB, but have a very positive lip biopsy.  I assume they biopsied you for small fiber neuropathy.

PrincessLeah

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Re: Complement C3/C4?
« Reply #2 on: June 18, 2010, 06:11:46 PM »
They have not biopsied me for anything nerve related.  They haven't done anything with my salivary glands (they never swelled up). I do have two small lumps under my left jaw (which may be lymph nodes or a salivary gland; hard to tell since they're so close together).  I read that they can do an ultrasound to see the extent of the damage to your major glands, which they haven't done.  They're just throwing drugs at me at this point, figuring it can't hurt.  As a patient, it's been frustrating.  My dad says they need to be doing Sherlock Holmes medicine -- ruling everything else out, before they settle on a diagnosis, especially in the total absence of any positive diagnostic work.  (The only positive thing is the Schirmer's test, and there's a lot of things that can cause dry eyes.)  People on these boards keep saying "Well, it doesn't really matter if you're diagnosed with an AI disease or not, since the treatment is the same."  It's kind of a big deal to me, though -- one, I've been having trouble with work, since "autoimmune disease" is considered a valid leave reason, and "acute apparent non-immune mediated idiopathic sicca syndrome" is not.  Also, if there's a chance it's something fixable, wouldn't you want to know?  Especially if the tertiary care rheumatologist isn't even sure you have it?

Not sure what her next move will be.  I'm STILL begging a doctor to check my thyroid and other hormones (my periods got all screwed up when this happened), which they won't do.

I'm ready to give up and check into Mayo.  From what I hear, they won't look at me for a half an hour and just kick me out of the door.

Suzy

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Re: Complement C3/C4?
« Reply #3 on: June 20, 2010, 03:05:08 PM »
Hey Leah,

I hear your frustration. I am one who would also like concrete answers and labels for everything, however I'm starting to realize that they might not be there in autoimmune disease.

I've had Sjogren's for a long time, and I have had so many weird health things happen (some landing me in the ER), but for most of them I never got a satisfactory answer. Of course, I think the answer is that I have a wacky immune system and I never know when and where it's going to strike, but most doctors don't think that big picture.

Anyway, in answer to the C3/C4, I have always had low C4. I don't really understand what it means, but I think it can be a marker in many different AI's.

Feel free to vent your frustration all you want. We understand.  :)

Suzy
I'm a 37-year-old stay-at-home mom to two little boys ages 8yrs and 4yrs.

Sjogren's DX '97, Raynaud's, Superficial Parotidectomy, Cholestasis of Pregnancy, Gilbert's, Vasculitis, Fibro, B12 & D Deficiency, Drug Allergies

Plaquenil, Lyrica, Rituxan, Vit D, B-Complex, Biotin, Calcium, Soothe XP

Pegasus47

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Re: Complement C3/C4?
« Reply #4 on: June 23, 2010, 02:11:14 PM »
C3/C4 is in the compliment cascade. Compliment cascade plus antibodies initiates cellular damage - drill holes in the cell membrane.  UCSan Diego is big on studying the compliment system.  I am not sure how the compliment cascade is related to Sjs. 

Well peace of mind when all tests come back negative.  Keep thinking positive - there is nothing we can do anyway.  If the symptoms are under control.  Go have fun!

Pegasus

navydad

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Re: Complement C3/C4?
« Reply #5 on: June 24, 2010, 09:53:03 PM »
Mayo will not kick you to the curb in a half hour,, but beware, they follow the Europian standard for SJYgrons,, and you better have at least three of you get sent home with more questions,, i met almost none, I was at Mayo in May,, I did not have positive SSA-SSB,, Ana,,, slightly dry eyes along with mouth, but no enough evidence to meet there criteria,, now my rheummy in pittsburgh is pissed,, he still says I have it and wants me to go to the sjygrons clinic in philly,, he said he can get me in quick since he knows the director,, ut what good is it goingt o do me,, the treatment is the same, I was a bit put off at mayo, I think they needed to look into te extent of the Small fibrr neuoropathy,, they didnt do any more punch biopsysd when protocal calls for 3,, I ihave had one,, that was back in 09,, and things have gotten worse since,, my neruo jst wont do what i ask, I guess he must be paying for it,, b

PrincessLeah

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Re: Complement C3/C4?
« Reply #6 on: June 29, 2010, 01:20:41 PM »
That's what I'm afraid of -- I have (objectively measured) dry eyes, dry mouth (nothing done with this -- still subjective), completely negative bloodwork, and a negative lip biopsy.  I'm afraid they'll look at me, say "Well, you probably have Sjogren's," and kick me out, which is what every single doctor has done to me so far.

I've gone in a couple of times to complain of weird symptoms.  I had a rash which cropped up on my right forearm.  My boyfriend took one look at it and said it was identical to a fungal skin infection he had gotten on his hand a few years back.  The rheumatologist looked at it and said that since I probably have an autoimmune disease, it's probably part of that.  As if, since it's autoimmune, I get to suffer through it, without any testing or a second thought to what's causing it.

It comes and goes, but the other morning, it woke me up with a MADDENING itch.  I tried lotion, hydrocortisone, everything, but nothing helped.  My Dad had some leftover generic Target antifungal cream that he gave me, and I put it on my arm.  Within 20 minutes, the itching had stopped.  I've been using it since then, and the rash seems to be disappearing.

And that is what makes me angry -- assuming that everything I'm going through is autoimmune, without even attempting to sort it out.  I don't think an antifungal cream would work on an infection that wasn't caused by a fungus.  I guess I'm going to have to get used to self-medicating.

PL

inga

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Re: Complement C3/C4?
« Reply #7 on: June 29, 2010, 01:59:35 PM »
I think you are very wise not to jump at a diagnosis.  I am not convinced that I have SjS and I meet all the criteria, except + SSA or SSB.  I do have a + ANA.....but I have wretched neuropathy, which could cause a great deal of the symptoms I have.  A skin biopsy will rule PN in or out.

ohiolady

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Re: Complement C3/C4?
« Reply #8 on: June 29, 2010, 02:23:07 PM »
Inga,

You said you are not convinced you have SJS.  What about dry eyes and mouth?  I thought I remembered you have both.  There aren't too many autoimmune illnesses that cause those two symptoms.  I think sarcoidosis does.  Just curious as to why you don't think you have SJS.

Anna
SJS  Hashimoto's   Mild Raynauds  GERD  Gastroparesis
Restasis, Evoxac, Dexilant,  Domperidone, Zofran and Synthroid. Fish Oil, Vit D and B12  R lipoic acid,  Acetyl L Cartnine, Vitamin B1, and The Perfect Food Green and Fruit supplement

Kidney Cancer Survivor   
Female   Age: 58

PrincessLeah

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Re: Complement C3/C4?
« Reply #9 on: June 29, 2010, 02:55:44 PM »
I'm not jumping at a diagnosis either.  I'm not convinced it's autoimmune -- I think it's possible that the medications I took caused some sort of damage (but not autoimmune), or I'm having a problem that would've gone away but has been exacerbated by everything else that's going on.  My Dad even laughingly suggested that I picked up some sort of parasite or weird viral or fungal infection of my mucus membranes.  He only said it half-jokingly.

(Even the rheumy said in my case that it's highly unusual to go from completely asymptomatic to full-blown severe sicca syndrome in the space of a couple of hours.  She seemed to doubt me as I was telling her that I've never had any AI symptoms.  Why on earth would I lie?  It does no good to pay a doctor hundreds of dollars and then not disclose something to them.)

It's just frustrating, because even the rheumy just kind of shrugged and said I'm out of luck.  My lip biopsy was negative for sarcoidosis too, and she said that sarc can show up in a lip biopsy also.

I think I read somewhere that doctors frequently give erythromycin (and members of its family, which is what I took that made me sick) to people who have intestinal problems, since it clears you out so quickly.  It basically kills everything in your gut (good and bad) which empties you out.  That definitely happened when I took it.  I'm still wondering if my intestinal difficulties aren't related to my course of antibiotics.

PL