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

[Guest guest]

Kathy,

Thank you for responding tonight in the middle of the night. Oh

Kathy, if you knew how I was beside myself with itching, I'm about

ready to go to the hospital, because I'm (well you know how bad a

horrendous itch is) These bumps have spread from the back of my

legs, (thighs and calf) then up to inner thighs and stomach. These

are the worse areas.

As for my medications and vitamins I had only been on two supplements

and stopped them last week. I only have 3 medications that I take

faithfully which I won't stop; ibuprophen, temazapan and

synthroid/thyroid smallest does 50mcg. I am aware I should stop

everything, and am holding. I'm not even taking any herbs like milk

thistle, nothing. The only other thing I had been taking real

faithful was EFA Omega 3-6-9. Honestly, I cannot afford Garden of

Life supplements, but do take the primal defense here and there.

That is one thing I know is good. I mean I'm not doubting primal

defense but its so expensive. However, I may have a niacinamide

intollerance. Do you think that is possible? I read something to

that effect. It may be necessary to stay away from it in my

supplements. It may still be something that is setting off this

horrible rash. Whatever it is girls I'm having a rouph rouph time.

As for the pattern of the ANA I don't have that back yet. I've never

had those patterns back and don't know how to get them.

I've had these tests done and they were negative:

ESR at 6, RA - Neg, DNA AB Double - Neg. DNA DS CRITH - Neg., Smooth

Muscle AB - neg. C3 107 range of 90-180 and C4 14 in range of 16-47,

SS-A/Ro AB - neg.,SS-B/La AB - neg. and CH50 = 40 in range of 26-

85U/mL. (the last one is all your complements together, I think there

are 7???

I will try to ask for my pattern. Or perhaps thats what these tests

meant up there. Does that tell you more. Since all those tests were

negative do you think he'll rule out Lupus for now? Or do you think

a lot will be in the balace of the ANA pattern? I may not be able to

get that back until Tues.

Thank you for responding you do seemed informed; pls. try to keep

helping me, I'm kinda coming unglued a little. Wondering what these

drs. will say and I guess the itching is getting to me. Of course a

dr. wouldn't know about a niacinamide reaction, they'll just say

vitamins aren't tested, stick to medication because they've been

tested for years and years before they are put on the market.

Actually I know the company very well that I get my vitamins from, it

is Oregon Health of Arizona.

Thank you again, I'll keep you posted.

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.

[Guest guest]

-

how much niacin were you taking? I have been searching the internet

and all I can find is that niacin can be heptatoxic and cause

rashes/flushing etc. So it definitely can cause rash/itching. I am

also concerned about possible liver damage it can cause. I would

drink tons of water and perhaps it wouldn't hurt to start the milk

thistle again if you know for a fact that you don't react to it

because it protects the liver. If you do a search on rim patterns

for ana you can probably find the info about which is usually seen

in lupus. I know that migraines can be definitely part of lupus

too. what does your rash look like? It isn't blister like is it?

I can totally understand why you are upset. I am so sorry that you

are going through this. I amsure it really has you to the end of

your rope. Hopefully you will get more answers on monday. Make

sure they do a urine test for protein and blood in the urine also.

It is a very important way to check for kidney damage. As I

understand it, kidney involvement at the time of lupus diagnosis is

a important indicator as to the seriousness of the disease in a

given person. How long ago did you quit the niacin? Is there any

changes you have made to anything that touches your skin? Laundry

detergent, softener, cleaners, shampoos, lotions, cosmetics,

household cleaners, anything at all? Perhaps it is a contact

dermatitis. Hang in there. I also found one reference that said

that liquid benedryl is best for itching/rashes. I will keep you in

my prayers.

Hugs

kathy

-- In , " "

<michellerking1@y...> wrote:

>

> Kathy,

> Thank you for responding tonight in the middle of the night. Oh

> Kathy, if you knew how I was beside myself with itching, I'm about

> ready to go to the hospital, because I'm (well you know how bad a

> horrendous itch is) These bumps have spread from the back of my

> legs, (thighs and calf) then up to inner thighs and stomach.

These

> are the worse areas.

>

> As for my medications and vitamins I had only been on two

supplements

> and stopped them last week. I only have 3 medications that I take

> faithfully which I won't stop; ibuprophen, temazapan and

> synthroid/thyroid smallest does 50mcg. I am aware I should stop

> everything, and am holding. I'm not even taking any herbs like

milk

> thistle, nothing. The only other thing I had been taking real

> faithful was EFA Omega 3-6-9. Honestly, I cannot afford Garden of

> Life supplements, but do take the primal defense here and there.

> That is one thing I know is good. I mean I'm not doubting primal

> defense but its so expensive. However, I may have a niacinamide

> intollerance. Do you think that is possible? I read something to

> that effect. It may be necessary to stay away from it in my

> supplements. It may still be something that is setting off this

> horrible rash. Whatever it is girls I'm having a rouph rouph

time.

>

> As for the pattern of the ANA I don't have that back yet. I've

never

> had those patterns back and don't know how to get them.

>

> I've had these tests done and they were negative:

> ESR at 6, RA - Neg, DNA AB Double - Neg. DNA DS CRITH - Neg.,

Smooth

> Muscle AB - neg. C3 107 range of 90-180 and C4 14 in range of 16-

47,

> SS-A/Ro AB - neg.,SS-B/La AB - neg. and CH50 = 40 in range of 26-

> 85U/mL. (the last one is all your complements together, I think

there

> are 7???

>

> I will try to ask for my pattern. Or perhaps thats what these

tests

> meant up there. Does that tell you more. Since all those tests

were

> negative do you think he'll rule out Lupus for now? Or do you

think

> a lot will be in the balace of the ANA pattern? I may not be able

to

> get that back until Tues.

>

> Thank you for responding you do seemed informed; pls. try to keep

> helping me, I'm kinda coming unglued a little. Wondering what

these

> drs. will say and I guess the itching is getting to me. Of course

a

> dr. wouldn't know about a niacinamide reaction, they'll just say

> vitamins aren't tested, stick to medication because they've been

> tested for years and years before they are put on the market.

> Actually I know the company very well that I get my vitamins from,

it

> is Oregon Health of Arizona.

>

> Thank you again, I'll keep you posted.

> 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.

[Guest guest]

Thank you and Bless you Kathy:

I was taking the prescribed amount of Niacinamide 150mg./day which is

only 75% of the Daily Allowance, however I took all 3 pills at once,

each pill containing 50mgs. I have not had my vitamins for 1 week

now.

My titer still has not returned and won't until tomorrow. My rash

WORSENS, and is spreading Therefore I don't think it was the

vitamins. I am taking temazapam for sleep and took it with 3

valerian at bedtime. I read you'renot suppose to do that but that is

only because it would make you more drowsy. I've decided to stop the

valerian. I took benadryl last night, but this morning I'm

dreadfully itchy. I'm trying to hard NOT to touch my skin, it is

sooooo sensitive. I don't know whether I should keep my appt. today

with GP or wait until titer is back. I'm wondering about kidney and

liver involvement myself. It's unbearable I should probably go

today. I've nearly gone to ER but can't stand the 4 hour wait. I've

tried to get a dermatologist but can't get in anywhere. I should get

off the phone and really get pursuing these drs.

The funny thing about the rash is it works its way for the most part

up the skin. It started just on the back of my thighs and a couple

on ankles. (I bought new socks and they were thick and tight on my

calfs; as looney as that sounds, possible an allergic reaction to the

fibers. Also, the sweat pants I normally wear around the house are

impossible for me to wear now. I must find the softest, loosest

material to wear, or I could just tear it off in a mad furry. LOL.

I've thought of just rinsing my clothing in HOT water to get rid of

detergents in them. Very possible. I should buy a etter brand of

soap because I use the cheapest, and have an apartment size washing

mach. perhaps it does not do a good job of rinsing.

However, back to the way the rash spreads. It seems to affect

adjacent skin. There is an order to the maddness. From the back of

my legs it moved in that area, to the back of my calfs, and up higher

on the legs to the buttocks and higher up the front of the legs near

the private area and in between legs there high up, and onto lower

part of stomach. The new outbreaks are significantly more itchy than

the others. A small rasied little mound appear. Sometimes just a

pointed pimple like eruption sometimes a larger hive type thing but

they only get the size of misquito bites. Though they will form a

crusted top that is flat. They do ooze a little when the tops are

scared off. Those that have been itch do worsen, but even without

they might nearly be the same size.

I've heard of skin that just because it is itched can cause

outbreaks. Therefore, I've tried like the dickens NOT to scrath at

all. Last night my ebsom salt bath seemed to help but then many new

ones broke out around my private area and buttocks later that night.

I will be trying to get a dermatologist appt. even if not today get

it in the making. I doubt my dr. has a clue, but I need something to

calm me.

God love you girl,

> > > >

> > > > 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.