Re: newly diaginosed looking for a support group to help

[Guest guest]

--- In , " ninajon2000 " <ninajon2000@y...>

wrote:

> Hello, I am a 32 year old female, who has recently been diaginosed

> with fibromialgia/polymialgia, CFS. My ANA also can back positive

so

> they are now breaking down the blood work to figure out which

> autoimmune disease I have. Needless to say I am fighting

depression,

> fear, and frustration. My symptoms are many, and I feel my family

> and friends do not understand what I am going thru. I need to talk

> to someone who knows what it is like and can help me with some of

my

> questions and fears. Please! I am on 8 scripts and they are

> discussing starting me on an antimalaria med for the auto immune

> disease, they said it slows the progression, but it has side

> effects, Has anyone heard of this, is anyone on one to help?

Hi, I am on Plaquenil ( Anti Malarial) for my " undifferentiated

connective tissue disorder). I have symptoms in the Lupus Family

according to my Rheumatologist. I have had positive ANA's since 1994,

my first lab came back 1:2560 and I have stayed around 1:300's to

1:640 now. The Plaquenil does have side effects at first, it took me

2 1/2 to 3 mos to get over them. I did not know if I could stand the

drug or not, til finally I can take it now without any side effects.I

have alot of other problems as well. But to answer your question

re:Anti Malarial drug, yes it is a common med used.

I am also suffering with Depression with Suicide Tendencies lately. I

am on Lexapro for the Depression. I have had Depression since 7th

grade tho. Hope some of this has helped. Don't be scared ok? The meds

are ok and tests will flucuate. Take care and I don't mind talking if

I can help, Darla

[Guest guest]

Hi Nina,

Welcome to the group, sorry about your diagnose. I hope you find some

comfort here, there is a great group of people here to get to know.

We all go through so much just to get a proper diagnose, it takes so

long, and it gets so frustrating. It's hard for friends and family

to understand sometimes, unless their in your shoes, they just don't

know. It's really hard I know, and I understand about depression.

There are many auto immune disorders, so I'm not sure what is going

on. Have you been diagnosed for Rheumatoid Arthritis? I am sure you

will find some answers here, there are a lot of people who can give

you wonderful information. I will keep you in my prayers, and hope

the doctor's find out something soon, take care Tawny

--- In , " ninajon2000 " <ninajon2000@y...>

wrote:

> Hello, I am a 32 year old female, who has recently been diaginosed

> with fibromialgia/polymialgia, CFS. My ANA also can back positive

so

> they are now breaking down the blood work to figure out which

> autoimmune disease I have. Needless to say I am fighting

depression,

> fear, and frustration. My symptoms are many, and I feel my family

> and friends do not understand what I am going thru. I need to talk

> to someone who knows what it is like and can help me with some of

my

> questions and fears. Please! I am on 8 scripts and they are

> discussing starting me on an antimalaria med for the auto immune

> disease, they said it slows the progression, but it has side

> effects, Has anyone heard of this, is anyone on one to help?

[Guest guest]

Hey friend.

I know the fear from being diagnosed with something you don't understand. I

have degenerative disc disease and have recently been diganosed with rheumatiod

arthitis. All these diseases go hand in hand. It is not easy. I am stil

trying to cope.. We are all here for you. If you need one on one.Let me know.

I have a wide shouldar. Keep your chin up. I am new to this too.

Judith Ann

ninajon2000 <ninajon2000@...> wrote:

Hello, I am a 32 year old female, who has recently been diaginosed

with fibromialgia/polymialgia, CFS. My ANA also can back positive so

they are now breaking down the blood work to figure out which

autoimmune disease I have. Needless to say I am fighting depression,

fear, and frustration. My symptoms are many, and I feel my family

and friends do not understand what I am going thru. I need to talk

to someone who knows what it is like and can help me with some of my

questions and fears. Please! I am on 8 scripts and they are

discussing starting me on an antimalaria med for the auto immune

disease, they said it slows the progression, but it has side

effects, Has anyone heard of this, is anyone on one to help?

[Guest guest]

Hey friend.

I know the fear from being diagnosed with something you don't understand. I

have degenerative disc disease and have recently been diganosed with rheumatiod

arthitis. All these diseases go hand in hand. It is not easy. I am stil

trying to cope.. We are all here for you. If you need one on one.Let me know.

I have a wide shouldar. Keep your chin up. I am new to this too.

Judith Ann

ninajon2000 <ninajon2000@...> wrote:

Hello, I am a 32 year old female, who has recently been diaginosed

with fibromialgia/polymialgia, CFS. My ANA also can back positive so

they are now breaking down the blood work to figure out which

autoimmune disease I have. Needless to say I am fighting depression,

fear, and frustration. My symptoms are many, and I feel my family

and friends do not understand what I am going thru. I need to talk

to someone who knows what it is like and can help me with some of my

questions and fears. Please! I am on 8 scripts and they are

discussing starting me on an antimalaria med for the auto immune

disease, they said it slows the progression, but it has side

effects, Has anyone heard of this, is anyone on one to help?

[Guest guest]

Sorry that you're not feeling good, Nina, and that you have a lot of

worries. Feel free to ask us whatever you'd like to.

Plaquenil (hydroxychloroquine sulfate), an antimalarial, is often used

to treat rheumatic diseases. It has a long history of use and a good

safety profile.

MedlinePlus Drug Information

" Hydroxychloroquine (systemic) " :

http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202288.html

What are the other 8 meds you are on?

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] newly diaginosed looking for a support group to

help

> Hello, I am a 32 year old female, who has recently been diaginosed

> with fibromialgia/polymialgia, CFS. My ANA also can back positive so

> they are now breaking down the blood work to figure out which

> autoimmune disease I have. Needless to say I am fighting depression,

> fear, and frustration. My symptoms are many, and I feel my family

> and friends do not understand what I am going thru. I need to talk

> to someone who knows what it is like and can help me with some of my

> questions and fears. Please! I am on 8 scripts and they are

> discussing starting me on an antimalaria med for the auto immune

> disease, they said it slows the progression, but it has side

> effects, Has anyone heard of this, is anyone on one to help?

[Guest guest]

the anti-malaria drug. is ( hope i spell it right) placanil . and all the meds

has side effects some more then others. here lately the way i see it is . your

either damned if you do or damned if you don't. we all just hope for the

best. and are best to you . mike

Judith Voter <lovemykj2002@...> wrote:Hey friend.

I know the fear from being diagnosed with something you don't understand. I

have degenerative disc disease and have recently been diganosed with rheumatiod

arthitis. All these diseases go hand in hand. It is not easy. I am stil

trying to cope.. We are all here for you. If you need one on one.Let me know.

I have a wide shouldar. Keep your chin up. I am new to this too.

Judith Ann

ninajon2000 <ninajon2000@...> wrote:

Hello, I am a 32 year old female, who has recently been diaginosed

with fibromialgia/polymialgia, CFS. My ANA also can back positive so

they are now breaking down the blood work to figure out which

autoimmune disease I have. Needless to say I am fighting depression,

fear, and frustration. My symptoms are many, and I feel my family

and friends do not understand what I am going thru. I need to talk

to someone who knows what it is like and can help me with some of my

questions and fears. Please! I am on 8 scripts and they are

discussing starting me on an antimalaria med for the auto immune

disease, they said it slows the progression, but it has side

effects, Has anyone heard of this, is anyone on one to help?

[Guest guest]

In a message dated 16/04/2004 17:45:20 Central Standard Time,

ninajon2000@... writes:

> I am on 8 scripts and they are

> discussing starting me on an antimalaria med for the auto immune

> disease, they said it slows the progression, but it has side

> effects, Has anyone heard of this, is anyone on one to help?

>

I wonder if you are talking about Plaquenil? It is an antimalarial, and many

of us take it without problems, although some have had side effects. I've

been on Plaquenil for just under 2 years, and it's one of the few I've been on

that I tolerate without a problem! Cary