Re: Lynda?: pos. ANA, C 4 deficient and Lupus diagnosis

[Guest guest]

I am sorry that you are having all of these problems and hopefully

you don't have lupus, but there is obviously a good chance that you

do. Have you seen your ana tests? The pattern is more telling than

the titer. For instance it can be speckled or have a rim stain. I

can't remember anymore which are more specific for lupus. But I

researched most of this myself as my first husband's family had alot

of lupus in it. I am always fearful of my daugher developing itas

she has many symptoms. She is 17. Also did they rho and anti-rho?

You could call the lupus foundation for more info.

I will say this. You should have a urine test to check for protein

in the urine. That is indicative of kidney involvement. Have they

done that? I know of several people doing antibiotic therapy for

lupus andthey have done very well. There are still many things you

can do to keep things under control if you have lupus. I do wonder

about the amount of things youare on. I think you should get off

most if not all of the supplements---they could be interacting with

each other. I would stick to just whole food supplements--like the

GArden of life stuff. His line of products are pretty comprehensive

and they are all from natural organic food sources and work with

each other. He has had success with autoimmune disease with his RM-

10 and other products. I am really concerned that all the herbs,

etc that you are taking may be making you worse as you are very

sensitive to so many things. Keep us posted about the your

diagnosis. I am praying for your return to health

hugs

kathy

>

> Dear Lynda,

> or anyone who knows about a Lupus Diagnosis and the blood work

that

> goes with it. My ANA is positive for the third time but I don't

know

> the titer. It's usually been low, 1:40, which 5% of the

population

> supposedly can have a pos. ANA at that titer without it meaning

> anything. However, my Complement 4 is now also deficient and that

is

> a very rare thing. It is 14 in a normal range of 16-47. I have

had

> an elevate Sed rate of 23, but it is down again now at 6. I got

> most of the Lupus symptoms and know it takes a long time to get

the

> diagnosis. But aside from the symptoms which my dr. said I had

all

> the symptoms accept the only system that he could not detect was

> chest pain. Well I've since had some horrendous chest pain. I've

> also found out that subcutaneous lupus rash can be very ithcy.

> Remeber I posted about it the other day?

>

> Also here are a few pieces of articles I copied concerning C4 and

the

> diagnosis of lupus. It says that it is rare to be deficient in C4

> and if you have that with a positive ANA it adds to your diagnosis

of

> Lupus. Please read...

>

> Complete C4 deficiency is rare. Two genes, C4A and C4B, encode

the

> C4 complement. Both genes are highly polymorphic, and, to date, at

> least 35 different alleles have been described. Almost all the

> patients with complete C4 deficiency have discoid or systemic

lupus

> erythematosus, with or without associated glomerulonephritis.

>

> In contrast to the frequent partial or complete C4A or C4B

> deficiencies, complete deficiencies of both C4A and C4B in an

> individual is rare (23, 24, 40, 41, 42, 43). Complete C4

deficiency

> is almost invariably discovered first in individuals or family

> members with SLE or other autoimmune disease (17). Most completeC4-

> deficient patients regularly suffer recurrent bacterial or viral

> infections, are photosensitive, and have early onset lupus or

lupus-

> like diseases (17).

>

> Complement C4 can be deficient in anywhere from 11% to 80% in the

> population with Systemic Lupus Erythematosus compared to 1% of the

> general population with a C4 deficiency . If your blood complement

> values or the C3 or C4 levels are low (immune complex processing),

> AND you also have a positive ANA, weight is added to the diagnosis

of

> lupus. Low C3 and C4 complement serum levels in individuals with a

> positive ANA may also signify the presence of lupus nephritis (

> kidney disease) to your doctor.

>

> What I have to do is wait for the titer of the ANA to come back.

> This is the 3rd or 4th time I've had a pos. ANA. The titer must

be

> more impressive for him to make a lupus diagnosis I'm sure. I

will

> have to wait until Mon. or Tues. I'll be seeing myGP andRhuemy

this

> week. There may be a chance of Kidney involvement when you are C4

> deficient.

>

> See complements are something that is used up to fight Lupus. My

C3

> is still okay but has also dropped from 123 to 107 in a normal

range

> of 90-180. The disease could be progressing in me because these

> numbers are dropping.

>

> And I'm still horrendously itchy and can't go without steroid

cream.

> I could go into the other numerous symptoms of lupus I have but I

> think we mostly know them here.

>

> Anyone have any comments, on if I have enough evidence with a C4

> deficiency for it to be lupus? I'm holding my breath for the ANA

> titer.

>

> Thanks for letting me share.

> K.

[Guest guest]

Ouch, that sounds bad. I know that this is indicative of lupus, but I do

not have any more knowledge than that.

Lynda

At 07:39 PM 2/26/2005, you wrote:

>Dear Lynda,

>or anyone who knows about a Lupus Diagnosis and the blood work that

>goes with it. My ANA is positive for the third time but I don't know

>the titer. It's usually been low, 1:40, which 5% of the population

>supposedly can have a pos. ANA at that titer without it meaning

>anything. However, my Complement 4 is now also deficient and that is

>a very rare thing. It is 14 in a normal range of 16-47. I have had

>an elevate Sed rate of 23, but it is down again now at 6. I got

>most of the Lupus symptoms and know it takes a long time to get the

>diagnosis. But aside from the symptoms which my dr. said I had all

>the symptoms accept the only system that he could not detect was

>chest pain. Well I've since had some horrendous chest pain. I've

>also found out that subcutaneous lupus rash can be very ithcy.

>Remeber I posted about it the other day?

>

>Also here are a few pieces of articles I copied concerning C4 and the

>diagnosis of lupus. It says that it is rare to be deficient in C4

>and if you have that with a positive ANA it adds to your diagnosis of

>Lupus. Please read...

>

>Complete C4 deficiency is rare. Two genes, C4A and C4B, encode the

>C4 complement. Both genes are highly polymorphic, and, to date, at

>least 35 different alleles have been described. Almost all the

>patients with complete C4 deficiency have discoid or systemic lupus

>erythematosus, with or without associated glomerulonephritis.

>

>In contrast to the frequent partial or complete C4A or C4B

>deficiencies, complete deficiencies of both C4A and C4B in an

>individual is rare (23, 24, 40, 41, 42, 43). Complete C4 deficiency

>is almost invariably discovered first in individuals or family

>members with SLE or other autoimmune disease (17). Most completeC4-

>deficient patients regularly suffer recurrent bacterial or viral

>infections, are photosensitive, and have early onset lupus or lupus-

>like diseases (17).

>

>Complement C4 can be deficient in anywhere from 11% to 80% in the

>population with Systemic Lupus Erythematosus compared to 1% of the

>general population with a C4 deficiency . If your blood complement

>values or the C3 or C4 levels are low (immune complex processing),

>AND you also have a positive ANA, weight is added to the diagnosis of

>lupus. Low C3 and C4 complement serum levels in individuals with a

>positive ANA may also signify the presence of lupus nephritis (

>kidney disease) to your doctor.

>

>What I have to do is wait for the titer of the ANA to come back.

>This is the 3rd or 4th time I've had a pos. ANA. The titer must be

>more impressive for him to make a lupus diagnosis I'm sure. I will

>have to wait until Mon. or Tues. I'll be seeing myGP andRhuemy this

>week. There may be a chance of Kidney involvement when you are C4

>deficient.

>

>See complements are something that is used up to fight Lupus. My C3

>is still okay but has also dropped from 123 to 107 in a normal range

>of 90-180. The disease could be progressing in me because these

>numbers are dropping.

>

>And I'm still horrendously itchy and can't go without steroid cream.

>I could go into the other numerous symptoms of lupus I have but I

>think we mostly know them here.

>

>Anyone have any comments, on if I have enough evidence with a C4

>deficiency for it to be lupus? I'm holding my breath for the ANA

>titer.

>

>Thanks for letting me share.

> K.

>

>

>

>

>

>

>Opinions expressed are NOT meant to take the place of advice given by

>licensed health care professionals. Consult your physician or licensed

>health care professional before commencing any medical treatment.

>

> " Do not let either the medical authorities or the politicians mislead you.

>Find out what the facts are, and make your own decisions about how to live

>a happy life and how to work for a better world. " - Linus ing,

>two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace)

>

>

[Guest guest]

Dear Lynda,

thank you very much for answering me so late in the evening as I'm

having a rather rough go of it lately, still itching very badly and

rather panicy when the itching gets bad, like I need to go to the

ER. I wrote a rather long note back to Kathy and told her more of

the tests that I had taken but they have all been negative, except

this complement 4 was low. Of course the ANA was pos. but I don't

know the titer or pattern yet (as Kathy says) I think perhaps the

pattern may have to do with the type of lupus, it may be more

specific. Well the waiting for my lab work to return is what is

killing me. If the itching doesn't stop I should have to stop

eatting as well as all supplements. ha ha . Do you think I could

have developed a niacinamide allergy? and possibly an intollerance?

I have been off it say 5 days now, nearly 6. The itching has even

spread, which makes me wonder if its not lupus related.

I know you've been diagnosed with lupus. Did you get itchy skin

especially in winter? I have like mosquito bites on my legs, and

stomach, unbareably itchy. Some of the dots are very small, but some

swell up to like nickle sizes.

Thank you for responding so late at night,

Thank you very much,

K.

>

> >Dear Lynda,

> >or anyone who knows about a Lupus Diagnosis and the blood work that

> >goes with it. My ANA is positive for the third time but I don't

know

> >the titer. It's usually been low, 1:40, which 5% of the population

> >supposedly can have a pos. ANA at that titer without it meaning

> >anything. However, my Complement 4 is now also deficient and that

is

> >a very rare thing. It is 14 in a normal range of 16-47. I have

had

> >an elevate Sed rate of 23, but it is down again now at 6. I got

> >most of the Lupus symptoms and know it takes a long time to get the

> >diagnosis. But aside from the symptoms which my dr. said I had all

> >the symptoms accept the only system that he could not detect was

> >chest pain. Well I've since had some horrendous chest pain. I've

> >also found out that subcutaneous lupus rash can be very ithcy.

> >Remeber I posted about it the other day?

> >

> >Also here are a few pieces of articles I copied concerning C4 and

the

> >diagnosis of lupus. It says that it is rare to be deficient in C4

> >and if you have that with a positive ANA it adds to your diagnosis

of

> >Lupus. Please read...

> >

> >Complete C4 deficiency is rare. Two genes, C4A and C4B, encode the

> >C4 complement. Both genes are highly polymorphic, and, to date, at

> >least 35 different alleles have been described. Almost all the

> >patients with complete C4 deficiency have discoid or systemic lupus

> >erythematosus, with or without associated glomerulonephritis.

> >

> >In contrast to the frequent partial or complete C4A or C4B

> >deficiencies, complete deficiencies of both C4A and C4B in an

> >individual is rare (23, 24, 40, 41, 42, 43). Complete C4 deficiency

> >is almost invariably discovered first in individuals or family

> >members with SLE or other autoimmune disease (17). Most completeC4-

> >deficient patients regularly suffer recurrent bacterial or viral

> >infections, are photosensitive, and have early onset lupus or

lupus-

> >like diseases (17).

> >

> >Complement C4 can be deficient in anywhere from 11% to 80% in the

> >population with Systemic Lupus Erythematosus compared to 1% of the

> >general population with a C4 deficiency . If your blood complement

> >values or the C3 or C4 levels are low (immune complex processing),

> >AND you also have a positive ANA, weight is added to the diagnosis

of

> >lupus. Low C3 and C4 complement serum levels in individuals with a

> >positive ANA may also signify the presence of lupus nephritis (

> >kidney disease) to your doctor.

> >

> >What I have to do is wait for the titer of the ANA to come back.

> >This is the 3rd or 4th time I've had a pos. ANA. The titer must be

> >more impressive for him to make a lupus diagnosis I'm sure. I will

> >have to wait until Mon. or Tues. I'll be seeing myGP andRhuemy

this

> >week. There may be a chance of Kidney involvement when you are C4

> >deficient.

> >

> >See complements are something that is used up to fight Lupus. My

C3

> >is still okay but has also dropped from 123 to 107 in a normal

range

> >of 90-180. The disease could be progressing in me because these

> >numbers are dropping.

> >

> >And I'm still horrendously itchy and can't go without steroid

cream.

> >I could go into the other numerous symptoms of lupus I have but I

> >think we mostly know them here.

> >

> >Anyone have any comments, on if I have enough evidence with a C4

> >deficiency for it to be lupus? I'm holding my breath for the ANA

> >titer.

> >

> >Thanks for letting me share.

> > K.

> >

> >

> >

> >

> >

> >

> >Opinions expressed are NOT meant to take the place of advice given

by

> >licensed health care professionals. Consult your physician or

licensed

> >health care professional before commencing any medical treatment.

> >

> > " Do not let either the medical authorities or the politicians

mislead you.

> >Find out what the facts are, and make your own decisions about how

to live

> >a happy life and how to work for a better world. " - Linus ing,

> >two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace)

> >

> >

[Guest guest]

,

No, I never got that, although I had sores on my legs for years that did

not go away and finally little hard granules came out of them when I dug

them off. It was a silicone product that had been in my system and was

coming out.

I had the itching all over, but it was a peripheral neuropathy.

Have you tried Benadryl. I would try that and see if it helps the

itch. If it does, it is an allergy.

Lynda

At 12:13 AM 2/27/2005, you wrote:

>Dear Lynda,

>thank you very much for answering me so late in the evening as I'm

>having a rather rough go of it lately, still itching very badly and

>rather panicy when the itching gets bad, like I need to go to the

>ER. I wrote a rather long note back to Kathy and told her more of

>the tests that I had taken but they have all been negative, except

>this complement 4 was low. Of course the ANA was pos. but I don't

>know the titer or pattern yet (as Kathy says) I think perhaps the

>pattern may have to do with the type of lupus, it may be more

>specific. Well the waiting for my lab work to return is what is

>killing me. If the itching doesn't stop I should have to stop

>eatting as well as all supplements. ha ha . Do you think I could

>have developed a niacinamide allergy? and possibly an intollerance?

>I have been off it say 5 days now, nearly 6. The itching has even

>spread, which makes me wonder if its not lupus related.

>

>I know you've been diagnosed with lupus. Did you get itchy skin

>especially in winter? I have like mosquito bites on my legs, and

>stomach, unbareably itchy. Some of the dots are very small, but some

>swell up to like nickle sizes.

>

>Thank you for responding so late at night,

>Thank you very much,

> K.

>

>

> >

> > >Dear Lynda,

> > >or anyone who knows about a Lupus Diagnosis and the blood work that

> > >goes with it. My ANA is positive for the third time but I don't

>know

> > >the titer. It's usually been low, 1:40, which 5% of the population

> > >supposedly can have a pos. ANA at that titer without it meaning

> > >anything. However, my Complement 4 is now also deficient and that

>is

> > >a very rare thing. It is 14 in a normal range of 16-47. I have

>had

> > >an elevate Sed rate of 23, but it is down again now at 6. I got

> > >most of the Lupus symptoms and know it takes a long time to get the

> > >diagnosis. But aside from the symptoms which my dr. said I had all

> > >the symptoms accept the only system that he could not detect was

> > >chest pain. Well I've since had some horrendous chest pain. I've

> > >also found out that subcutaneous lupus rash can be very ithcy.

> > >Remeber I posted about it the other day?

> > >

> > >Also here are a few pieces of articles I copied concerning C4 and

>the

> > >diagnosis of lupus. It says that it is rare to be deficient in C4

> > >and if you have that with a positive ANA it adds to your diagnosis

>of

> > >Lupus. Please read...

> > >

> > >Complete C4 deficiency is rare. Two genes, C4A and C4B, encode the

> > >C4 complement. Both genes are highly polymorphic, and, to date, at

> > >least 35 different alleles have been described. Almost all the

> > >patients with complete C4 deficiency have discoid or systemic lupus

> > >erythematosus, with or without associated glomerulonephritis.

> > >

> > >In contrast to the frequent partial or complete C4A or C4B

> > >deficiencies, complete deficiencies of both C4A and C4B in an

> > >individual is rare (23, 24, 40, 41, 42, 43). Complete C4 deficiency

> > >is almost invariably discovered first in individuals or family

> > >members with SLE or other autoimmune disease (17). Most completeC4-

> > >deficient patients regularly suffer recurrent bacterial or viral

> > >infections, are photosensitive, and have early onset lupus or

>lupus-

> > >like diseases (17).

> > >

> > >Complement C4 can be deficient in anywhere from 11% to 80% in the

> > >population with Systemic Lupus Erythematosus compared to 1% of the

> > >general population with a C4 deficiency . If your blood complement

> > >values or the C3 or C4 levels are low (immune complex processing),

> > >AND you also have a positive ANA, weight is added to the diagnosis

>of

> > >lupus. Low C3 and C4 complement serum levels in individuals with a

> > >positive ANA may also signify the presence of lupus nephritis (

> > >kidney disease) to your doctor.

> > >

> > >What I have to do is wait for the titer of the ANA to come back.

> > >This is the 3rd or 4th time I've had a pos. ANA. The titer must be

> > >more impressive for him to make a lupus diagnosis I'm sure. I will

> > >have to wait until Mon. or Tues. I'll be seeing myGP andRhuemy

>this

> > >week. There may be a chance of Kidney involvement when you are C4

> > >deficient.

> > >

> > >See complements are something that is used up to fight Lupus. My

>C3

> > >is still okay but has also dropped from 123 to 107 in a normal

>range

> > >of 90-180. The disease could be progressing in me because these

> > >numbers are dropping.

> > >

> > >And I'm still horrendously itchy and can't go without steroid

>cream.

> > >I could go into the other numerous symptoms of lupus I have but I

> > >think we mostly know them here.

> > >

> > >Anyone have any comments, on if I have enough evidence with a C4

> > >deficiency for it to be lupus? I'm holding my breath for the ANA

> > >titer.

> > >

> > >Thanks for letting me share.

> > > K.

> > >

> > >

> > >

> > >

> > >

> > >

> > >Opinions expressed are NOT meant to take the place of advice given

>by

> > >licensed health care professionals. Consult your physician or

>licensed

> > >health care professional before commencing any medical treatment.

> > >

> > > " Do not let either the medical authorities or the politicians

>mislead you.

> > >Find out what the facts are, and make your own decisions about how

>to live

> > >a happy life and how to work for a better world. " - Linus ing,

> > >two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace)

> > >

> > >

[Guest guest]

Lynda:

Do you know how long this niacinamide itch could last?

I thought you said earlier in the week you were diagnosed with

Lupus? Do you have Lupus? What did it take for you to get the

diagnosis?

I've been on Zrytec which is just like benadryl, I've only gotten a

little releaf from it. It seems everything is irritating the skin.

Fibers can, and heat can I know that for sure. And the more I itch

the worse it gets. I'm going to push detox as much as possible.

Still waiting for blood work. And going to soak in epsom salt bath

tongiht to see if that soothes me at all. The only thing that helps

is not moving, just sleeping, its so bad.

Hugs, K.

> > >

> > > >Dear Lynda,

> > > >or anyone who knows about a Lupus Diagnosis and the blood work

that

> > > >goes with it. My ANA is positive for the third time but I

don't

> >know

> > > >the titer. It's usually been low, 1:40, which 5% of the

population

> > > >supposedly can have a pos. ANA at that titer without it meaning

> > > >anything. However, my Complement 4 is now also deficient and

that

> >is

> > > >a very rare thing. It is 14 in a normal range of 16-47. I

have

> >had

> > > >an elevate Sed rate of 23, but it is down again now at 6. I

got

> > > >most of the Lupus symptoms and know it takes a long time to

get the

> > > >diagnosis. But aside from the symptoms which my dr. said I

had all

> > > >the symptoms accept the only system that he could not detect

was

> > > >chest pain. Well I've since had some horrendous chest pain.

I've

> > > >also found out that subcutaneous lupus rash can be very ithcy.

> > > >Remeber I posted about it the other day?

> > > >

> > > >Also here are a few pieces of articles I copied concerning C4

and

> >the

> > > >diagnosis of lupus. It says that it is rare to be deficient

in C4

> > > >and if you have that with a positive ANA it adds to your

diagnosis

> >of

> > > >Lupus. Please read...

> > > >

> > > >Complete C4 deficiency is rare. Two genes, C4A and C4B, encode

the

> > > >C4 complement. Both genes are highly polymorphic, and, to

date, at

> > > >least 35 different alleles have been described. Almost all the

> > > >patients with complete C4 deficiency have discoid or systemic

lupus

> > > >erythematosus, with or without associated glomerulonephritis.

> > > >

> > > >In contrast to the frequent partial or complete C4A or C4B

> > > >deficiencies, complete deficiencies of both C4A and C4B in an

> > > >individual is rare (23, 24, 40, 41, 42, 43). Complete C4

deficiency

> > > >is almost invariably discovered first in individuals or family

> > > >members with SLE or other autoimmune disease (17). Most

completeC4-

> > > >deficient patients regularly suffer recurrent bacterial or

viral

> > > >infections, are photosensitive, and have early onset lupus or

> >lupus-

> > > >like diseases (17).

> > > >

> > > >Complement C4 can be deficient in anywhere from 11% to 80% in

the

> > > >population with Systemic Lupus Erythematosus compared to 1% of

the

> > > >general population with a C4 deficiency . If your blood

complement

> > > >values or the C3 or C4 levels are low (immune complex

processing),

> > > >AND you also have a positive ANA, weight is added to the

diagnosis

> >of

> > > >lupus. Low C3 and C4 complement serum levels in individuals

with a

> > > >positive ANA may also signify the presence of lupus nephritis (

> > > >kidney disease) to your doctor.

> > > >

> > > >What I have to do is wait for the titer of the ANA to come

back.

> > > >This is the 3rd or 4th time I've had a pos. ANA. The titer

must be

> > > >more impressive for him to make a lupus diagnosis I'm sure. I

will

> > > >have to wait until Mon. or Tues. I'll be seeing myGP andRhuemy

> >this

> > > >week. There may be a chance of Kidney involvement when you

are C4

> > > >deficient.

> > > >

> > > >See complements are something that is used up to fight Lupus.

My

> >C3

> > > >is still okay but has also dropped from 123 to 107 in a normal

> >range

> > > >of 90-180. The disease could be progressing in me because

these

> > > >numbers are dropping.

> > > >

> > > >And I'm still horrendously itchy and can't go without steroid

> >cream.

> > > >I could go into the other numerous symptoms of lupus I have

but I

> > > >think we mostly know them here.

> > > >

> > > >Anyone have any comments, on if I have enough evidence with a

C4

> > > >deficiency for it to be lupus? I'm holding my breath for the

ANA

> > > >titer.

> > > >

> > > >Thanks for letting me share.

> > > > K.

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >

> > > >Opinions expressed are NOT meant to take the place of advice

given

> >by

> > > >licensed health care professionals. Consult your physician or

> >licensed

> > > >health care professional before commencing any medical

treatment.

> > > >

> > > > " Do not let either the medical authorities or the politicians

> >mislead you.

> > > >Find out what the facts are, and make your own decisions about

how

> >to live

> > > >a happy life and how to work for a better world. " - Linus

ing,

> > > >two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace)

> > > >

> > > >

[Guest guest]

Try Benadryl instead of Zyrtec. And try calamine lotion.

I do not know if I actually have lupus, but I certainly have the symptoms

at times.

At 04:49 PM 2/27/2005, you wrote:

>Lynda:

>Do you know how long this niacinamide itch could last?

>I thought you said earlier in the week you were diagnosed with

>Lupus? Do you have Lupus? What did it take for you to get the

>diagnosis?

>

>I've been on Zrytec which is just like benadryl, I've only gotten a

>little releaf from it. It seems everything is irritating the skin.

>Fibers can, and heat can I know that for sure. And the more I itch

>the worse it gets. I'm going to push detox as much as possible.

>Still waiting for blood work. And going to soak in epsom salt bath

>tongiht to see if that soothes me at all. The only thing that helps

>is not moving, just sleeping, its so bad.

>Hugs, K.

>

>

> > > >

> > > > >Dear Lynda,

> > > > >or anyone who knows about a Lupus Diagnosis and the blood work

>that

> > > > >goes with it. My ANA is positive for the third time but I

>don't

> > >know

> > > > >the titer. It's usually been low, 1:40, which 5% of the

>population

> > > > >supposedly can have a pos. ANA at that titer without it meaning

> > > > >anything. However, my Complement 4 is now also deficient and

>that

> > >is

> > > > >a very rare thing. It is 14 in a normal range of 16-47. I

>have

> > >had

> > > > >an elevate Sed rate of 23, but it is down again now at 6. I

>got

> > > > >most of the Lupus symptoms and know it takes a long time to

>get the

> > > > >diagnosis. But aside from the symptoms which my dr. said I

>had all

> > > > >the symptoms accept the only system that he could not detect

>was

> > > > >chest pain. Well I've since had some horrendous chest pain.

>I've

> > > > >also found out that subcutaneous lupus rash can be very ithcy.

> > > > >Remeber I posted about it the other day?

> > > > >

> > > > >Also here are a few pieces of articles I copied concerning C4

>and

> > >the

> > > > >diagnosis of lupus. It says that it is rare to be deficient

>in C4

> > > > >and if you have that with a positive ANA it adds to your

>diagnosis

> > >of

> > > > >Lupus. Please read...

> > > > >

> > > > >Complete C4 deficiency is rare. Two genes, C4A and C4B, encode

>the

> > > > >C4 complement. Both genes are highly polymorphic, and, to

>date, at

> > > > >least 35 different alleles have been described. Almost all the

> > > > >patients with complete C4 deficiency have discoid or systemic

>lupus

> > > > >erythematosus, with or without associated glomerulonephritis.

> > > > >

> > > > >In contrast to the frequent partial or complete C4A or C4B

> > > > >deficiencies, complete deficiencies of both C4A and C4B in an

> > > > >individual is rare (23, 24, 40, 41, 42, 43). Complete C4

>deficiency

> > > > >is almost invariably discovered first in individuals or family

> > > > >members with SLE or other autoimmune disease (17). Most

>completeC4-

> > > > >deficient patients regularly suffer recurrent bacterial or

>viral

> > > > >infections, are photosensitive, and have early onset lupus or

> > >lupus-

> > > > >like diseases (17).

> > > > >

> > > > >Complement C4 can be deficient in anywhere from 11% to 80% in

>the

> > > > >population with Systemic Lupus Erythematosus compared to 1% of

>the

> > > > >general population with a C4 deficiency . If your blood

>complement

> > > > >values or the C3 or C4 levels are low (immune complex

>processing),

> > > > >AND you also have a positive ANA, weight is added to the

>diagnosis

> > >of

> > > > >lupus. Low C3 and C4 complement serum levels in individuals

>with a

> > > > >positive ANA may also signify the presence of lupus nephritis (

> > > > >kidney disease) to your doctor.

> > > > >

> > > > >What I have to do is wait for the titer of the ANA to come

>back.

> > > > >This is the 3rd or 4th time I've had a pos. ANA. The titer

>must be

> > > > >more impressive for him to make a lupus diagnosis I'm sure. I

>will

> > > > >have to wait until Mon. or Tues. I'll be seeing myGP andRhuemy

> > >this

> > > > >week. There may be a chance of Kidney involvement when you

>are C4

> > > > >deficient.

> > > > >

> > > > >See complements are something that is used up to fight Lupus.

>My

> > >C3

> > > > >is still okay but has also dropped from 123 to 107 in a normal

> > >range

> > > > >of 90-180. The disease could be progressing in me because

>these

> > > > >numbers are dropping.

> > > > >

> > > > >And I'm still horrendously itchy and can't go without steroid

> > >cream.

> > > > >I could go into the other numerous symptoms of lupus I have

>but I

> > > > >think we mostly know them here.

> > > > >

> > > > >Anyone have any comments, on if I have enough evidence with a

>C4

> > > > >deficiency for it to be lupus? I'm holding my breath for the

>ANA

> > > > >titer.

> > > > >

> > > > >Thanks for letting me share.

> > > > > K.

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >

> > > > >Opinions expressed are NOT meant to take the place of advice

>given

> > >by

> > > > >licensed health care professionals. Consult your physician or

> > >licensed

> > > > >health care professional before commencing any medical

>treatment.

> > > > >

> > > > > " Do not let either the medical authorities or the politicians

> > >mislead you.

> > > > >Find out what the facts are, and make your own decisions about

>how

> > >to live

> > > > >a happy life and how to work for a better world. " - Linus

>ing,

> > > > >two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace)

> > > > >

> > > > >

[Guest guest]

Yes I have used the benadryl off and on through the course of this

but it does make me very drowsy. Dr. said the zyrtec would be good

because it did not make me drowsy and had the same effect, though

only once a day pill and I was not allowed to take them together. So

I thought the zyrtec was as good. I don't know.

I called a dr. on call and he didn't think the C4 was deficient

enough to be a concern. He said, best to wait until the ANA is

back. I have to go to dr. tomorrow or I'll go when tests are back.

After soaking in tub and forcing myself not to itch, because that

brings on more itching, I'm doing fair. Skin is very irritated.

Don't have calamine on hand but could get some. Can try benadryl

too. We'll see how things develop. Just hope I can resume my

vitamins, at a slow pace. Hugs, K.

> > > > >

> > > > > >Dear Lynda,

> > > > > >or anyone who knows about a Lupus Diagnosis and the blood

work

> >that

> > > > > >goes with it. My ANA is positive for the third time but I

> >don't

> > > >know

> > > > > >the titer. It's usually been low, 1:40, which 5% of the

> >population

> > > > > >supposedly can have a pos. ANA at that titer without it

meaning

> > > > > >anything. However, my Complement 4 is now also deficient

and

> >that

> > > >is

> > > > > >a very rare thing. It is 14 in a normal range of 16-47. I

> >have

> > > >had

> > > > > >an elevate Sed rate of 23, but it is down again now at

6. I

> >got

> > > > > >most of the Lupus symptoms and know it takes a long time to

> >get the

> > > > > >diagnosis. But aside from the symptoms which my dr. said I

> >had all

> > > > > >the symptoms accept the only system that he could not

detect

> >was

> > > > > >chest pain. Well I've since had some horrendous chest

pain.

> >I've

> > > > > >also found out that subcutaneous lupus rash can be very

ithcy.

> > > > > >Remeber I posted about it the other day?

> > > > > >

> > > > > >Also here are a few pieces of articles I copied concerning

C4

> >and

> > > >the

> > > > > >diagnosis of lupus. It says that it is rare to be

deficient

> >in C4

> > > > > >and if you have that with a positive ANA it adds to your

> >diagnosis

> > > >of

> > > > > >Lupus. Please read...

> > > > > >

> > > > > >Complete C4 deficiency is rare. Two genes, C4A and C4B,

encode

> >the

> > > > > >C4 complement. Both genes are highly polymorphic, and, to

> >date, at

> > > > > >least 35 different alleles have been described. Almost all

the

> > > > > >patients with complete C4 deficiency have discoid or

systemic

> >lupus

> > > > > >erythematosus, with or without associated

glomerulonephritis.

> > > > > >

> > > > > >In contrast to the frequent partial or complete C4A or C4B

> > > > > >deficiencies, complete deficiencies of both C4A and C4B in

an

> > > > > >individual is rare (23, 24, 40, 41, 42, 43). Complete C4

> >deficiency

> > > > > >is almost invariably discovered first in individuals or

family

> > > > > >members with SLE or other autoimmune disease (17). Most

> >completeC4-

> > > > > >deficient patients regularly suffer recurrent bacterial or

> >viral

> > > > > >infections, are photosensitive, and have early onset lupus

or

> > > >lupus-

> > > > > >like diseases (17).

> > > > > >

> > > > > >Complement C4 can be deficient in anywhere from 11% to 80%

in

> >the

> > > > > >population with Systemic Lupus Erythematosus compared to

1% of

> >the

> > > > > >general population with a C4 deficiency . If your blood

> >complement

> > > > > >values or the C3 or C4 levels are low (immune complex

> >processing),

> > > > > >AND you also have a positive ANA, weight is added to the

> >diagnosis

> > > >of

> > > > > >lupus. Low C3 and C4 complement serum levels in individuals

> >with a

> > > > > >positive ANA may also signify the presence of lupus

nephritis (

> > > > > >kidney disease) to your doctor.

> > > > > >

> > > > > >What I have to do is wait for the titer of the ANA to come

> >back.

> > > > > >This is the 3rd or 4th time I've had a pos. ANA. The titer

> >must be

> > > > > >more impressive for him to make a lupus diagnosis I'm

sure. I

> >will

> > > > > >have to wait until Mon. or Tues. I'll be seeing myGP

andRhuemy

> > > >this

> > > > > >week. There may be a chance of Kidney involvement when you

> >are C4

> > > > > >deficient.

> > > > > >

> > > > > >See complements are something that is used up to fight

Lupus.

> >My

> > > >C3

> > > > > >is still okay but has also dropped from 123 to 107 in a

normal

> > > >range

> > > > > >of 90-180. The disease could be progressing in me because

> >these

> > > > > >numbers are dropping.

> > > > > >

> > > > > >And I'm still horrendously itchy and can't go without

steroid

> > > >cream.

> > > > > >I could go into the other numerous symptoms of lupus I have

> >but I

> > > > > >think we mostly know them here.

> > > > > >

> > > > > >Anyone have any comments, on if I have enough evidence

with a

> >C4

> > > > > >deficiency for it to be lupus? I'm holding my breath for

the

> >ANA

> > > > > >titer.

> > > > > >

> > > > > >Thanks for letting me share.

> > > > > > K.

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >

> > > > > >Opinions expressed are NOT meant to take the place of

advice

> >given

> > > >by

> > > > > >licensed health care professionals. Consult your physician

or

> > > >licensed

> > > > > >health care professional before commencing any medical

> >treatment.

> > > > > >

> > > > > > " Do not let either the medical authorities or the

politicians

> > > >mislead you.

> > > > > >Find out what the facts are, and make your own decisions

about

> >how

> > > >to live

> > > > > >a happy life and how to work for a better world. " - Linus

> >ing,

> > > > > >two-time Nobel Prize Winner (1954, Chemistry; 1963, Peace)

> > > > > >

> > > > > >