Lupus

celeste · 06-05-2008, 11:25 AM

Help - I need lots of info quickly - its too hard to google thru tears. My daughter has just been diagnosed with Lupus - it started out as ITP, pregnosone not really helping. Im just trying to not freak out. Any experiences here would be appreciated.

pooticus · 06-08-2008, 11:49 AM

celeste.

I have ITP (it has been in remission many years) but I first got it at about 6mos of age. I am no in my 40s. Have faith and I will keep you all in my prayers.

CurveControl · 06-08-2008, 01:29 PM

My Mom has lupus. Do you kow what systemsare being affected? Lupus has a TON of info about it, But if you can pinoint the affected systems you can narrow your search. My Mom's targets are skin and kidney and brain.

celeste · 06-08-2008, 08:18 PM

Thanks guys - we dont know the targets yet. We should know more this week.

CheriYM · 07-05-2008, 09:14 AM

Hey Celeste-
I was diagnosed with lupus when I was 14 (1976) so have lots of experience with the disease. I have been really fortunate in that my disease has responded well to medication and I had been in remission for the last 18 years. Ironically, I am here on this board to try to control weight gain due to being back on prednisone and I will be starting Cellcept due to a lupus flare.
If you have any questions or want to talk let me know and we can exchange info. I am in NYC and found a great rheumatologist at Columbia Pres . . .

CheriYM · 07-05-2008, 02:06 PM

Wanted to post my story and why I am here - it's a long one, but will try to streamline a bit . . . I was diagnosed with lupus (SLE) in '76 when I was 14. I had kidney and pericardium involvement and was treated with steroids. I responded well to the meds, but back then they didn't know all the bad side effects of being on them long-term. Although they reduced the dosage, I was on them until '82. I was in remission for 3 years and had another flare-up in '85. Kidney involvement again. Was treated with prednisone and a chemo drug called imuran. This time got off all meds by January '88 and then was in remission until January of '07 - 19 years!!

Meanwhile - back in the early 90's I had 3 heart attacks, and was diagnosed with triple vessel disease - most likely due to either the lupus or the long term steroids. Fortunately, my heart function was still good (EF in 50's) and I opted for medical treatment rather than the bypass surgery that they wanted to do when I was 33! Over the years I have become an advocate of non-invasive cardiology.
And now the latest chapter - in May of '06 I was diagnosed with papillary thyroid cancer and had a total thyroidectomy. When I started on thyroid replacement meds, for some unknown reason my body didn't absorb them and my endo wasn't very aggressive in getting things controlled and my TSH bounced around between 10 and 60 for the rest of '06. We think the stress on my body of being so hypothyroid is what kicked the lupus out of remission in Jan '07. I've been hospitalized 6 times since then, coughing up blood. Given my significant cardiac issues, and the fact that I got better relatively quickly and had never had lung involvement before (and the aggressiveness of cardiologists

) the lupus diagnosis was set aside each time this happened and the heart became the focus.
The basic treatment for lupus is to shut down the immune system and reboot it. So, I will have to be on immunosuppressants - high-dose steroids for about 6 months while we start chemotherapy (Cellcept) that will suppress my immune system further. If I am able to tolerate the chemo, the steroids will be reduced and I will stay on the chemo for about a year total and then begin slowly reducing the dosage until I am off all meds. The hope is then things stay quiet and the lupus is back in remission for a very long time - again.
So that leads back to the whole LC thing. When I had to go on steroids back when I was 14, I weighed 130 lbs and gained 30 lbs in 2 months. Thus began my battle with weight. I did lose most of it later when I got off the steroids, but had another flare in '85 - had to go back on the meds and have struggled ever since. When the whole thyroid thing started I packed on 60 lbs and reached my all time high of 235. So, I am here now to try to at least maintain and maybe even try to lose while on the steroids.

celeste · 07-05-2008, 08:45 PM

Thank you Cheri for that info and your story. I still don't have a visualization of what Lupus looks like or what it can mean for Katy, so the story really helps. She sees the rhumatologist again July 9th and hopefully will have more info then. I know the dr is worried about her kidneys because finding blood in her urine is how this whole thing started. All we can do right now is wait, some more. Thank you for sharing your story.

CheriYM · 07-06-2008, 06:22 AM

I don't want to overload you with info - but lupus is a disease of the immune system. It can affect only the skin (rashes, puerpera) and is called discoid lupus or it can affect any collagen/connective tissue (joints, kidneys, lungs, heart, etc.) in the body and then is called systemic lupus erythematosis(SLE).
What happens is the body's immune system short-circuits and starts producing extra antibodies that attack your own body. Any kind of stress (physical, emotional) can exacerbate the disease.
When the antibodies attack, they cause inflammation and can do damage - so the treatment is to initially use drugs to decrease the inflammation by suppressing the immune system (prednisone-usually). Then depending on the severity, a chemo drug is often added to further suppress the immune system to keep it from doing damage. Blood work is done to measure antibodies and over time the meds are gradually decreased, the immune system comes back up and the lupus hopefully stays in remission for a long time.

06-05-2008, 11:25 AM	#1
celeste MAJOR LCF POSTER! Join Date: Jul 2002 Location: New London, CT Posts: 2,605 Gallery: celeste Start Date: November 1999	Lupus Help - I need lots of info quickly - its too hard to google thru tears. My daughter has just been diagnosed with Lupus - it started out as ITP, pregnosone not really helping. Im just trying to not freak out. Any experiences here would be appreciated.

07-05-2008, 09:14 AM	#5
CheriYM Junior LCF Member Join Date: Jul 2008 Location: New York City Posts: 37 Gallery: CheriYM Stats: 235/220/160 WOE: low glycemic/high fiber Start Date: January 2008	Hey Celeste- I was diagnosed with lupus when I was 14 (1976) so have lots of experience with the disease. I have been really fortunate in that my disease has responded well to medication and I had been in remission for the last 18 years. Ironically, I am here on this board to try to control weight gain due to being back on prednisone and I will be starting Cellcept due to a lupus flare. If you have any questions or want to talk let me know and we can exchange info. I am in NYC and found a great rheumatologist at Columbia Pres . . . __________________ * Cheri * FitDay*WeightLossJournal MedicalStuff Last edited by CheriYM : 07-05-2008 at 09:16 AM. Reason: typo

07-05-2008, 02:06 PM	#6
CheriYM Junior LCF Member Join Date: Jul 2008 Location: New York City Posts: 37 Gallery: CheriYM Stats: 235/220/160 WOE: low glycemic/high fiber Start Date: January 2008	Lupus and Thyroid Issues Wanted to post my story and why I am here - it's a long one, but will try to streamline a bit . . . I was diagnosed with lupus (SLE) in '76 when I was 14. I had kidney and pericardium involvement and was treated with steroids. I responded well to the meds, but back then they didn't know all the bad side effects of being on them long-term. Although they reduced the dosage, I was on them until '82. I was in remission for 3 years and had another flare-up in '85. Kidney involvement again. Was treated with prednisone and a chemo drug called imuran. This time got off all meds by January '88 and then was in remission until January of '07 - 19 years!! Meanwhile - back in the early 90's I had 3 heart attacks, and was diagnosed with triple vessel disease - most likely due to either the lupus or the long term steroids. Fortunately, my heart function was still good (EF in 50's) and I opted for medical treatment rather than the bypass surgery that they wanted to do when I was 33! Over the years I have become an advocate of non-invasive cardiology. And now the latest chapter - in May of '06 I was diagnosed with papillary thyroid cancer and had a total thyroidectomy. When I started on thyroid replacement meds, for some unknown reason my body didn't absorb them and my endo wasn't very aggressive in getting things controlled and my TSH bounced around between 10 and 60 for the rest of '06. We think the stress on my body of being so hypothyroid is what kicked the lupus out of remission in Jan '07. I've been hospitalized 6 times since then, coughing up blood. Given my significant cardiac issues, and the fact that I got better relatively quickly and had never had lung involvement before (and the aggressiveness of cardiologists ) the lupus diagnosis was set aside each time this happened and the heart became the focus. The basic treatment for lupus is to shut down the immune system and reboot it. So, I will have to be on immunosuppressants - high-dose steroids for about 6 months while we start chemotherapy (Cellcept) that will suppress my immune system further. If I am able to tolerate the chemo, the steroids will be reduced and I will stay on the chemo for about a year total and then begin slowly reducing the dosage until I am off all meds. The hope is then things stay quiet and the lupus is back in remission for a very long time - again. So that leads back to the whole LC thing. When I had to go on steroids back when I was 14, I weighed 130 lbs and gained 30 lbs in 2 months. Thus began my battle with weight. I did lose most of it later when I got off the steroids, but had another flare in '85 - had to go back on the meds and have struggled ever since. When the whole thyroid thing started I packed on 60 lbs and reached my all time high of 235. So, I am here now to try to at least maintain and maybe even try to lose while on the steroids.

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06-08-2008, 11:49 AM	#2
pooticus Way too much time on my hands! Join Date: May 2004 Location: somewhere over the rainbow Posts: 15,930 Gallery: pooticus Stats: 314/284.2/150 WOE: PersonalPlan Start Date: Nov.20, 2007	celeste. I have ITP (it has been in remission many years) but I first got it at about 6mos of age. I am no in my 40s. Have faith and I will keep you all in my prayers.

06-08-2008, 01:29 PM	#3
CurveControl Formerlychubchick Join Date: Sep 2004 Location: Ohio Posts: 42,465 Blog Entries: 8 Gallery: CurveControl Stats: 200/ 186.0 /135 WOE: moderate carb, 30-60 grams Start Date: 3/25/08 sigh	My Mom has lupus. Do you kow what systemsare being affected? Lupus has a TON of info about it, But if you can pinoint the affected systems you can narrow your search. My Mom's targets are skin and kidney and brain.

06-08-2008, 08:18 PM	#4
celeste MAJOR LCF POSTER! Join Date: Jul 2002 Location: New London, CT Posts: 2,605 Gallery: celeste Start Date: November 1999	Thanks guys - we dont know the targets yet. We should know more this week.

07-05-2008, 08:45 PM	#7
celeste MAJOR LCF POSTER! Join Date: Jul 2002 Location: New London, CT Posts: 2,605 Gallery: celeste Start Date: November 1999	Thank you Cheri for that info and your story. I still don't have a visualization of what Lupus looks like or what it can mean for Katy, so the story really helps. She sees the rhumatologist again July 9th and hopefully will have more info then. I know the dr is worried about her kidneys because finding blood in her urine is how this whole thing started. All we can do right now is wait, some more. Thank you for sharing your story.

07-06-2008, 06:22 AM	#8
CheriYM Junior LCF Member Join Date: Jul 2008 Location: New York City Posts: 37 Gallery: CheriYM Stats: 235/220/160 WOE: low glycemic/high fiber Start Date: January 2008	I don't want to overload you with info - but lupus is a disease of the immune system. It can affect only the skin (rashes, puerpera) and is called discoid lupus or it can affect any collagen/connective tissue (joints, kidneys, lungs, heart, etc.) in the body and then is called systemic lupus erythematosis(SLE). What happens is the body's immune system short-circuits and starts producing extra antibodies that attack your own body. Any kind of stress (physical, emotional) can exacerbate the disease. When the antibodies attack, they cause inflammation and can do damage - so the treatment is to initially use drugs to decrease the inflammation by suppressing the immune system (prednisone-usually). Then depending on the severity, a chemo drug is often added to further suppress the immune system to keep it from doing damage. Blood work is done to measure antibodies and over time the meds are gradually decreased, the immune system comes back up and the lupus hopefully stays in remission for a long time.