new girl with a few questions

[Guest guest]

Hi everyone, first i want to say that i think what you have here is

wonderful. Just from reading a bit you all seem like the most caring

people. I have had lupus now for about 2 years, although I think I

spent the better part of those 2 in denial. Right now I seem to be in

the middle of a horrendous flare. Does anyone have the experience of

feeling like your dizzy all the time? I feel very shaky and unstaedy.

I have a 2 yr old daughter and I am afraid to get in the car and

drive because of this. Any insight would be helpful. I am seieng my

rheum tomorrow...Ive been on CellCept and Prednisone for about 1.5

yrs now. I am considering asking to try something new as the CellCept

doesnt seem to be keeping things at bay for very long. I spent a week

in the hosp. at the end of March. Anyway - can anyone give me an

honest opinion about some of the other meds you use?

Thank you so much for listening, I am really stressed and very upset

right now.

Meg

[Guest guest]

Hi Meg! Welcome to the group. You are right, it is a wonderful

place for us. I don't get to post that often but I do pop in to read

messages. I have been diagnosed with Lupus for 2 years also. I know

I have had this dreaded disease much longer as I had the mouth ulcers

back in the mid 90s...the dizziness you speak of in the early 90s...I

could go on. But it seemed that my disease became more obvious when

I was pregnant with my last baby who just turned 2. I had 3

miscarriages so my OB tested me for everything imaginable. I tested

positive for the antibody but had no real symptoms at the time. My

symptoms appeared immediately upon giving birth. They were severe.

But what I thought was Postpartum Depression turned out to be much

more. It was only after 5 months of torture and thinking that I was

losing my mind that I knew it had to be something more. The tests at

my family doc revealed that I may have Lupus so I was sent to the

Rheumy. He diagnosed me as having SLE in November 2002. I began

some treatment but my husband was soon laid off from his job and we

were without medical insurance. He has since changed jobs several

more times and just when we get coverage we start all over again.

Hopefully this is the last job change for a while...LOL I am not

currently being treated but plan to go back to the doc soon. I am

doing better than I was. A lot better in comparison to 2 years ago.

But that doesn't mean I don't have flares. I have them pretty often

but they are milder and shorter. Don't think you can top 5

months+ !!! The last 2 days I have been having severe fatigue,

irritability and my joints are swollen. I believe it's too much sun

exposure and stress. I had my first bout of dizziness back in 1992.

It was pretty bad. I was sent to the Ear, Nose, Throat and

everything came back ok. I had more episodes during my pregnancy and

went back to the ENT to be told that everything was ok. I have had

it so bad that I couldn't do a thing for a week at a time. My head

would spin while lying down so bad that I would scream out. I had a

spell about 2 weeks ago that only lasted 2 days. I have never been

told that the dizziness is related but I believe so. I understand

what you are going thru. We seem to have quite a bit in common. I

could (and probably already did) type a book here. So I will end

this now. If you would like to send me a yahoo IM please feel free.

Would love to talk to you.

Tracie

> Hi everyone, first i want to say that i think what you have here is

> wonderful. Just from reading a bit you all seem like the most

caring

> people. I have had lupus now for about 2 years, although I think I

> spent the better part of those 2 in denial. Right now I seem to be

in

> the middle of a horrendous flare. Does anyone have the experience

of

> feeling like your dizzy all the time? I feel very shaky and

unstaedy.

> I have a 2 yr old daughter and I am afraid to get in the car and

> drive because of this. Any insight would be helpful. I am seieng my

> rheum tomorrow...Ive been on CellCept and Prednisone for about 1.5

> yrs now. I am considering asking to try something new as the

CellCept

> doesnt seem to be keeping things at bay for very long. I spent a

week

> in the hosp. at the end of March. Anyway - can anyone give me an

> honest opinion about some of the other meds you use?

> Thank you so much for listening, I am really stressed and very

upset

> right now.

>

> Meg

[Guest guest]

Hi Meg! Welcome to the group. You are right, it is a wonderful

place for us. I don't get to post that often but I do pop in to read

messages. I have been diagnosed with Lupus for 2 years also. I know

I have had this dreaded disease much longer as I had the mouth ulcers

back in the mid 90s...the dizziness you speak of in the early 90s...I

could go on. But it seemed that my disease became more obvious when

I was pregnant with my last baby who just turned 2. I had 3

miscarriages so my OB tested me for everything imaginable. I tested

positive for the antibody but had no real symptoms at the time. My

symptoms appeared immediately upon giving birth. They were severe.

But what I thought was Postpartum Depression turned out to be much

more. It was only after 5 months of torture and thinking that I was

losing my mind that I knew it had to be something more. The tests at

my family doc revealed that I may have Lupus so I was sent to the

Rheumy. He diagnosed me as having SLE in November 2002. I began

some treatment but my husband was soon laid off from his job and we

were without medical insurance. He has since changed jobs several

more times and just when we get coverage we start all over again.

Hopefully this is the last job change for a while...LOL I am not

currently being treated but plan to go back to the doc soon. I am

doing better than I was. A lot better in comparison to 2 years ago.

But that doesn't mean I don't have flares. I have them pretty often

but they are milder and shorter. Don't think you can top 5

months+ !!! The last 2 days I have been having severe fatigue,

irritability and my joints are swollen. I believe it's too much sun

exposure and stress. I had my first bout of dizziness back in 1992.

It was pretty bad. I was sent to the Ear, Nose, Throat and

everything came back ok. I had more episodes during my pregnancy and

went back to the ENT to be told that everything was ok. I have had

it so bad that I couldn't do a thing for a week at a time. My head

would spin while lying down so bad that I would scream out. I had a

spell about 2 weeks ago that only lasted 2 days. I have never been

told that the dizziness is related but I believe so. I understand

what you are going thru. We seem to have quite a bit in common. I

could (and probably already did) type a book here. So I will end

this now. If you would like to send me a yahoo IM please feel free.

Would love to talk to you.

Tracie

> Hi everyone, first i want to say that i think what you have here is

> wonderful. Just from reading a bit you all seem like the most

caring

> people. I have had lupus now for about 2 years, although I think I

> spent the better part of those 2 in denial. Right now I seem to be

in

> the middle of a horrendous flare. Does anyone have the experience

of

> feeling like your dizzy all the time? I feel very shaky and

unstaedy.

> I have a 2 yr old daughter and I am afraid to get in the car and

> drive because of this. Any insight would be helpful. I am seieng my

> rheum tomorrow...Ive been on CellCept and Prednisone for about 1.5

> yrs now. I am considering asking to try something new as the

CellCept

> doesnt seem to be keeping things at bay for very long. I spent a

week

> in the hosp. at the end of March. Anyway - can anyone give me an

> honest opinion about some of the other meds you use?

> Thank you so much for listening, I am really stressed and very

upset

> right now.

>

> Meg

[Guest guest]

-Hi Meg- A lot of us take plaquenil, it's used for lupus, and RA,

maybe other things too. Originally was a antimalarial drug, but

seems to help autoimmune disease too.

I had dizzy spells a while back but mine were more panic

attack/anxiety related. I am on paxil (antideppressant) for this

problem. Sounds like you have been a good girl taking meds for 1.5

years if you are in denial. I am glad , as if you don't take your

meds your organs can be at risk of being attacked. Go talk to your

doctor about these dizzy spells---maybe it's something else??? You

aren't pregnant are you? (i don't mean to offend!, just a thought)

I am 36 and have had SLE for about 1 year (diagnosed). I have 3

children---11 y/o boy who is autistic, 8y/o girl and 5y/o boy. I am

married and live in Michigan. I am really busy and only get on here

once in a while, but I do care about everyone on here, and try to

keep up when I can. I can be reached on yahoo personal email too. I

hope you find the support and caring that I have found from this

group, talk to you later!!

- In LUPIES , " megl2001 " wrote:

> Hi everyone, first i want to say that i think what you have here is

> wonderful. Just from reading a bit you all seem like the most

caring

> people. I have had lupus now for about 2 years, although I think I

> spent the better part of those 2 in denial. Right now I seem to be

in

> the middle of a horrendous flare. Does anyone have the experience

of

> feeling like your dizzy all the time? I feel very shaky and

unstaedy.

> I have a 2 yr old daughter and I am afraid to get in the car and

> drive because of this. Any insight would be helpful. I am seieng my

> rheum tomorrow...Ive been on CellCept and Prednisone for about 1.5

> yrs now. I am considering asking to try something new as the

CellCept

> doesnt seem to be keeping things at bay for very long. I spent a

week

> in the hosp. at the end of March. Anyway - can anyone give me an

> honest opinion about some of the other meds you use?

> Thank you so much for listening, I am really stressed and very

upset

> right now.

>

> Meg

[Guest guest]

Thanks evryone for your help. Not that I would wish this on anyone,

but it is nice to know that there are poeple like me who are having

the same types of problems. Right now i feel frustrated because as

lousy as I feel, there is always someone saying - well you dont look

so bad...I want to scream!!! I was so upset the other day i started

to cry and my 2yr old came up to me and was so sad that i was crying.

I felt so bad. I try to never let her see me like that - but this

time it just got the best of me. I went to the md the yesterday. I am

staying on cellcept and increasing the dreaded prednisone. Also will

re-start Plaquenil to help with rashes etc.. restart Ambien to help

me sleep. Does anyone else feel weird/guilty for asking for pain

killers? I feel like I am being judged but maybe thats my own

insecurity. anyway - it was nice to hear from you guys, thanks again

meg

> Hi everyone, first i want to say that i think what you have here is

> wonderful. Just from reading a bit you all seem like the most

caring

> people.

[Guest guest]

Thanks evryone for your help. Not that I would wish this on anyone,

but it is nice to know that there are poeple like me who are having

the same types of problems. Right now i feel frustrated because as

lousy as I feel, there is always someone saying - well you dont look

so bad...I want to scream!!! I was so upset the other day i started

to cry and my 2yr old came up to me and was so sad that i was crying.

I felt so bad. I try to never let her see me like that - but this

time it just got the best of me. I went to the md the yesterday. I am

staying on cellcept and increasing the dreaded prednisone. Also will

re-start Plaquenil to help with rashes etc.. restart Ambien to help

me sleep. Does anyone else feel weird/guilty for asking for pain

killers? I feel like I am being judged but maybe thats my own

insecurity. anyway - it was nice to hear from you guys, thanks again

meg

> Hi everyone, first i want to say that i think what you have here is

> wonderful. Just from reading a bit you all seem like the most

caring

> people.