Re: I'M CURED......I DON'T HAVE LUPUS ANYMORE !!

[Guest guest]

Hi sweetie, that is great news that your lupus is in " remission "

but..... I hate to be the one to say this but I just spoke with my

rhuemy and read him your letter and he agree's with me. Remission

does not mean it is cured - all it means is that it is " not active "

My rhuemy questions yours because of the mere fact that he did not

examine you let alone run lab work of his own. Had my rhuemy gone by

my previous lab work and notes from other doctors heck he would have

said I don't have lupus either. The thing is I had never had a

positive ANA and it wasn't until just late last year that I finally

did have a positive one. As for whether or not you want to avoid the

sun or go out and play in it - well that is your choice but even

people without lupus should be very careful with the UV sunrays. I

have lupus but I don't have the photosensitivity to it nor have I

gotten the butterfly rash.

All I can say hon, is enjoy being in remission - that is wonderful

news. Your lupus may never come out of remission but it may down the

road and if you ever have symptoms get them checked.

I feel for you with the fibro and Sjogren's I suffer from those too

and its the pits. Take care hon and keep us informed on how your

doing.

Much love and go celebrate...

Deanna

> Blank

> Greetings My Fellow Lupies,

>

> I just got back from my first visit with my new

Rheumatologist.......and guess what.....

>

> " I DON'T HAVE LUPUS !! " He didn't examine me or do any lab

work .....he just read my Medical files from my other doctors. Now my

Nephrologist and my PCP have both told me that all the markers for

Lupus were negative which meant that my Lupus was not active.....But

THIS doctor said that I am in `REMISSION'....which means that I don't

have Lupus anymore.....and probably won't have a recurrance again!

>

> He told me that I have Fibromyalgia, and Sjogren's Syndrom.......MY

MOUTH IS STILL HANGING OPEN!.......

>

> He also said that I don't need to avoid the sun or U.V.

rays.....since I don't have Lupus .....He also said that most Lupus

Patients don't have Photosensitivity anyway ! .....MOUTH GETTING

WIDER......He asked me if I get a rash or flu-like symtoms or fever

when I am in the sun......I said I don't test it .....since I was

diagnosed with Lupus ....and was told not to go in the sun without

sunscreen and a hat and long sleeves....that's what I do.

>

> He said he doesn't restrict his Lupus patient from going in the

sun unless they have ......something..... I can't remember what he

called it that indicates photosensitivity..........He took my blood

pressure....which was 150/70......listened to my chest.......pressed

on my left ankle and said the slight edema was caused by Norvasc, my

blood pressure medication.......He told me to keep seeing my

Nephrologist, but my kidney involvment was caused by high blood

pressure not Lupus.....Cause I don't have Lupus !

>

> He lowered my dose of Prednisone to 71/2 mg. a day, told me to keep

taking all my other meds as usual, and come back in 3

Months........I'm not surprised that he told me that I have

Fibromyalgia and Sjogren's Syndrome.......But I don't have Lupus

Anymore???

>

> Have I found anotherOr am I a miracle????

[Guest guest]

, You don't have Lupus? I don't know if that's a good or a bad thing for you? Is this doctor legit? If he was my doctor, he'd leave me asking a lot of questions. -. I'M CURED......I DON'T HAVE LUPUS ANYMORE !! Greetings My Fellow Lupies, I just got back from my first visit with my new Rheumatologist.......and guess what..... "I DON'T HAVE LUPUS !!" He didn't examine me or do any lab work .....he just read my Medical files from my other doctors. Now my Nephrologist and my PCP have both told me that all the markers for Lupus were negative which meant that my Lupus was not active.....But THIS doctor said that I am in `REMISSION'....which means that I don't have Lupus anymore.....and probably won't have a recurrance again! He told me that I have Fibromyalgia, and Sjogren's Syndrom.......MY MOUTH IS STILL HANGING OPEN!.......

[Guest guest]

Hi ,

As you have probably read by now.......that Subject line was written "Toungue in Cheek".....I know I have Lupus.......he just added a couple more diagnosis to me......I know that there is no cure for Lupus.....I still feel the same.....and will be taking the same meds . just lowering my pred.My Lupus has not been active for some time now .....this was the first doctor who has told me that .....I don't have Lupus! It was kinda hard not to laugh in his face!........Just another Quack......I was saying in my head. Oh well .....as long as he will prescribe the medicines I need ......and help me to get off Prednisone.....

C.

I'M CURED......I DON'T HAVE LUPUS ANYMORE !!

Greetings My Fellow Lupies,

I just got back from my first visit with my new Rheumatologist.......and guess what.....

"I DON'T HAVE LUPUS !!" He didn't examine me or do any lab work .....he just read my Medical files from my other doctors. Now my Nephrologist and my PCP have both told me that all the markers for Lupus were negative which meant that my Lupus was not active.....But THIS ! doctor s aid that I am in `REMISSION'....which means that I don't have Lupus anymore.....and probably won't have a recurrance again!

He told me that I have Fibromyalgia, and Sjogren's Syndrom.......MY MOUTH IS STILL HANGING OPEN!......."The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies

[Guest guest]

I am so glad to hear that you are in remission now. I been in remission since nov of 2003 and i have never felt so good like I do now don't get me wrong I do have my aches and pains and sometimes feel like my lupus is coming back but i just had all the dna and all them test done and everything came back really good for now. So I wish you all the luck in the world with your lupus being in remission.

Love Kimi

Hi Ellen,

As you probably have read by now......That subject line was written "Tongue in Cheek"....I know that I have Lupus, and although It has not been active for some time now.....all the Lupus Markers Negative.....I was just shocked to have this new doctor tell me that .....I don't have lupus!

Thanks for sharing your story with me.....I will continue to use sunscreen.

He is the first doctor to tell me that I have Fibromyalgia, which I have suspected for sometime....I just didn't want to say it out loud., or write about it........like that would make me hurt even more.!!

C.

Re: I'M CURED......I DON'T HAVE LUPUS ANYMORE !!/

<< `REMISSION'....which means that I don't have Lupus anymore.....and probably won't have a recurrance again! >>I was so happy to read your post that you are in remission. I don't want to rain on your parade.....but I was in remission for a good 6-7 years. And when it came back it came back with a vengeance. Which I hope you stay in remission forever. As far as the sun.....from the day I was diagnosed in 1988 until 2002 the sun has never bothered me. Every rheumy that I've seen warned me, I went on 8 cruises and laid and baked in the sun and it never bothered me. I was a sunworshiper. Well, last year and again this year the sun has made a mess of my skin. Just one outing without sunscreen and I am a mess for months on ends. I made the mistake last week to be in the yard and forgot my sunscreen, I am an ugly mess, and I see my rheumy next week. I am going to catch hell again from her, and I deserve it as I should know better. So to all of you that are not sun sensitive....beware....it caught up with me.Love & Friendship,Ellen

[Guest guest]

Thanks Kimi,

I hope you stay in remission forever !

I still have horrible pain and fatigue.....but now know it is from Fibro.

C.

Re: I'M CURED......I DON'T HAVE LUPUS ANYMORE !!/

<< `REMISSION'....which means that I don't have Lupus anymore.....and probably won't have a recurrance again! >>I was so happy to read your post that you are in remission. I don't want to rain on your parade.....but I was in remission for a good 6-7 years. And when it came back it came back with a vengeance. Which I hope you stay in remission forever. As far as the sun.....from the day I was diagnosed in 1988 until 2002 the sun has never bothered me. Every rheumy that I've seen warned me, I went on 8 cruises and laid and baked in the sun and it never bothered me. I was a sunworshiper. Well, last year and again this year the sun has made a mess of my skin. Just one outing without sunscreen and I am a mess for months on ends. I made the mistake last week to be in the yard and forgot my sunscreen, I am an ugly mess, and I see my rheumy next week. I am going to catch hell again from her, and I deserve it as I should know better. So to all of you that are not sun sensitive....beware....it caught up with me.Love & Friendship,Ellen"The LUPIES Store" Come check out our store...http://www.cafepress.com/thelupies"The LUPIES Web Page"http://www.itzarion.com/lupusgroup.html"The LUPIES online photo albums!" Check out what your fellow Lupies look like...http://www.picturetrail.com/lupies