Re: PA, Anaemia & Lupus Questions

March 15, 2007

Hi ,

I have PA, Lupus, and Fibromyalgia. The way I found out I have Lupus is they

did a certain blood test for all my inflammation, and a Lupus test which came

back positive. A lot of people never have a positive blood test for Lupus, but

still have the disease. Lupus is called the great " masker " . The symptoms are

many, some very strange, and a lot of times doctors think you have something

else because Lupus tends to act like other things sometimes.

In any case, you need to talk to your doctor about Lupus.

*hugs*

Misty

<myszabi@...> wrote:

Hi all

Well, this is my first big question, hope someone can help.

After really struggling with my PA for the last week, I finally went

off to see the GP (rheumy unavailable again) and in consultation with

my rheumy, I am on cortisone for a week, then two weeks weaning off.

My normal meds are salazopyryn, prexige, duatrol and penicillamine.

Anyway, while there I asked for a referral to a new rheum. Thanks to

Kathy on here, my niggling doubt that it was time to trade him in,

became a reality. While there, he printed off all my blood test

records to give to the new guy.

Now, I trot off like clockwork and have blood tests every month. I

have never ever been told the results so have always assumed

everything was fine.

After reading the results, I'm now a little alarmed. On the last four,

my haemoglobin levels have been steadily dropping. It also say " The

red cells are normochomic and show slight anisocytosis and

poikilocytosis. "

I Googled all of this (of course) and it seems to refer to anaemia. I

have never been anaemic before, why now? Why haven't they noticed? The

other thing that kept coming up with these words, especially when you

throw the word " arthritis " in, was Lupus. From what I have read, it

appears you need four symptoms out of a list of about 10 to be

comsidered to have Lupus. I have four.

What is lupus?

Am I just worrying about nothing? Can anyone tell me anything about

the anaemia references, or for that matter, Lupus?

Thanks for your help!

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March 16, 2007

Hi ,

I have had PA for 29 years, thyroid issues for almost as long and was

diagnosed 6 years ago with Lupus. My doc thought I might have had Lupus back in

the late '90's but it was not clear then. I got really sick at the beginning of

2002 - started having chest pain, dizzyness, fatigue etc. At the time I was

training as a 911 Dispatcher and just thought it was all stress related so

ignored my symptoms.

To make a long story short, I ended up in the emerg and was hospitalized for 5

weeks. It took them almost that long to determine it was Lupus. I was anemic and

had 4 blood transfusions, CT's, an MRI, blood tests almost daily, bone marrow

test, they tried to do a biopsy of an enlarged lymph gland in my abdomen (to no

avail) and finally, I think by process of elimination, decided it was Lupus. For

awhile they thought lymphoma and some kind of tropical disease, so it's a tricky

disease sometimes to diagnose.

The anemia seems to go hand in hand with Lupus, but not necessarily for

everyone. My second flareup a year later I had plueral effusion and chest pain,

but was not anemic as I had been when first diagnosed.

Lupus is called the disease of 1000 faces because it can be so different in

each patient. It can affect the lungs, heart, joints, kidneys, skin, CNS, all to

varying degrees. You should talk to your doc about your concerns. There are

Lupus organizations in many large cities or some are lumped in with Arthritis

Associations and I've found good info from them.

I have an excellent book on Lupus, if you would like the name I can get it for

you (I'm at work right now and can't remember the author's name but he is a

rheumy). Lots of great info.

Good luck, take care of yourself.

Margo

<myszabi@...> wrote:

Hi all

Well, this is my first big question, hope someone can help.

After really struggling with my PA for the last week, I finally went

off to see the GP (rheumy unavailable again) and in consultation with

my rheumy, I am on cortisone for a week, then two weeks weaning off.

My normal meds are salazopyryn, prexige, duatrol and penicillamine.

Anyway, while there I asked for a referral to a new rheum. Thanks to

Kathy on here, my niggling doubt that it was time to trade him in,

became a reality. While there, he printed off all my blood test

records to give to the new guy.

Now, I trot off like clockwork and have blood tests every month. I

have never ever been told the results so have always assumed

everything was fine.

After reading the results, I'm now a little alarmed. On the last four,

my haemoglobin levels have been steadily dropping. It also say " The

red cells are normochomic and show slight anisocytosis and

poikilocytosis. "

I Googled all of this (of course) and it seems to refer to anaemia. I

have never been anaemic before, why now? Why haven't they noticed? The

other thing that kept coming up with these words, especially when you

throw the word " arthritis " in, was Lupus. From what I have read, it

appears you need four symptoms out of a list of about 10 to be

comsidered to have Lupus. I have four.

What is lupus?

Am I just worrying about nothing? Can anyone tell me anything about

the anaemia references, or for that matter, Lupus?

Thanks for your help!

---------------------------------

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March 18, 2007

Thanks for that information Margo. It's interesting that you mention

thyroid problems too, my mum has had thyroid cancer.

It seems the more I read about Lupus, the more and more familiar it

seems. I am probably (hopefully) wrong, but I will be pushing my

doctor to see what I can find out.

nd yes, I would love to know the name of that book you mentioned.

Thanks again

>

> Hi ,

> I have had PA for 29 years, thyroid issues for almost as long and

was diagnosed 6 years ago with Lupus. My doc thought I might have had

Lupus back in the late '90's but it was not clear then. I got really

sick at the beginning of 2002 - started having chest pain, dizzyness,

fatigue etc. At the time I was training as a 911 Dispatcher and just

thought it was all stress related so ignored my symptoms.

>

> To make a long story short, I ended up in the emerg and was

hospitalized for 5 weeks. It took them almost that long to determine

it was Lupus. I was anemic and had 4 blood transfusions, CT's, an MRI,

blood tests almost daily, bone marrow test, they tried to do a biopsy

of an enlarged lymph gland in my abdomen (to no avail) and finally, I

think by process of elimination, decided it was Lupus. For awhile they

thought lymphoma and some kind of tropical disease, so it's a tricky

disease sometimes to diagnose.

>

> The anemia seems to go hand in hand with Lupus, but not

necessarily for everyone. My second flareup a year later I had plueral

effusion and chest pain, but was not anemic as I had been when first

diagnosed.

>

> Lupus is called the disease of 1000 faces because it can be so

different in each patient. It can affect the lungs, heart, joints,

kidneys, skin, CNS, all to varying degrees. You should talk to your

doc about your concerns. There are Lupus organizations in many large

cities or some are lumped in with Arthritis Associations and I've

found good info from them.

>

> I have an excellent book on Lupus, if you would like the name I

can get it for you (I'm at work right now and can't remember the

author's name but he is a rheumy). Lots of great info.

>

> Good luck, take care of yourself.

>

> Margo

March 18, 2007

Hi ,

The book is called " The Lupus Book - A Guide For Patients " by Dr.

Wallace. I used to refer to it quite often - very informative. There is an

updated version out now that I would like to get. You may be able to have a look

at one of the versions in your local library before you spend the money.

All the best,

Margo

<myszabi@...> wrote:

Thanks for that information Margo. It's interesting that you mention

thyroid problems too, my mum has had thyroid cancer.

It seems the more I read about Lupus, the more and more familiar it

seems. I am probably (hopefully) wrong, but I will be pushing my

doctor to see what I can find out.

nd yes, I would love to know the name of that book you mentioned.

Thanks again

March 20, 2007

Don't really know much on lupus... But I am sure you can google that and find

sites to explain in more detail... I google a lot then I can find things and see

if they relate to my pa or something eles...

Love and peace always,

Shaun and Barb...

March 21, 2007

Hi,

I have pa and my sister has lupus..We have alot of the same struggles..but she

has had problems with anemia..but all this started with an illness called

idiopathic thrombocytopenia purpura(ITP) She ended up after a long battle with

low platlets of getting her spleen removed..After that she went thru about 3

years of very very severe infections that just seemed to consume her body...We

almost lost her several times..She is just a miracle..After this she began

having problems in her lungs and developed an abscess in one of them and

actually had to have part of a lung removed..Again we almost lost her..I could

just go on and on..but to make a long story short she now has flares with her

heart, brain, lungs and kidneys..lupus has attacked all those areas at one time

or another..She also has problems with her thyroid..she is on medication to keep

her levels stable..she battles with hyper and hypo thyroidism..which I think is

strange since most people have one or the

other..but she has a lupus lesion on her pituitary...She takes the thyroid

medication to try and keep it stable..

Sorry this is long if you have a specific question you may email me if you

would like..

Vickey

cntrykissed1 <countrykissed1@...> wrote:

Don't really know much on lupus... But I am sure you can google that

and find sites to explain in more detail... I google a lot then I can find

things and see if they relate to my pa or something eles...

Love and peace always,

Shaun and Barb...

March 21, 2007

Hi Vickey,

I'm so sorry your sick, and your sister has Lupus. I too, have Lupus. I have

what's called Systemic Lupus which is what attacks all your major organs, skin,

etc. I'm sure that's what your sister is suffering from too since you named all

the major organs it has attacked in her. Bless her heart! I caught this eary,

my kidneys were in the stages of shutting down. I never put Anemia with my

Lupus but not long before I was diagnosed, I had quite a few bouts with anemia.

Right now the anemia is under control. I can't imagine my lungs and brain being

attacked, she must be a VERY strong woman!! Give her a hug from me as one Lupus

patient to another. Your sister's story is what inspired me to write. Usually

I don't post, but i'd love to keep up with your sister's progress if possible.

You can email me off post if you want to.

*hugs*

Misty

Vickey Arnold <smilin4dannme2002@...> wrote: