lupus

Posted by roysbaby @roysbaby, Jul 12, 2011

Does anyone have lupus? Wanna talk

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I do just diagnosed no one to talk too

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Hi there, I was just browsing and thought this thread looked a little lonely, I don't have lupus but I thought I would look up some info that you may have not read. I'm sure you know from your doctor all the medical stuff so here is what mayo says about alternative remedies. http://www.mayoclinic.com/health/lupus/DS00115/DSECTION=lifestyle-and-home-remedies

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My 25 year old daughter was diagnosed with what they think is lupus, high ANA tests, but they "can't be sure." They think it is some type of auto-immune disease. She is on high doses of steroids, and had tapered off to a low dose, then a week or so ago, she developed a full-body lesionar rash. Steroids aren't working for it, and doctors are not sure what to do. She has gone to a rheumatologist, dermatologist, etc. She is in Taiwan. I would be interested in hearing what type of symptoms you have, what medicine(s) they are using to treat it, and any other "strange" symptoms you have. Also, what tests they used to diagnose it. If you don't mind sharing, I would love to hear from you. Also, I wish you the best of luck. My sister gave my daughter a book about living with lupus titled, "You Don't Have to be Healthy to be Happy." Was encouraging to my daughter. 🙂

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@roysbaby

I do just diagnosed no one to talk too

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I'' bite, have lupus, well actually MCTD, Raynauds, proximal muscle, and arthritis, I have had it 10 years this fall (I'm now 35) and now that I know what my limits are the only thing I don't do now that I did before was wear Mittens (and ice fish, but thats kinda boring anyway if you out grow the drinking) and take meds....

your turn how old, where do you live and what questions do you have....

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@emtlisap

My 25 year old daughter was diagnosed with what they think is lupus, high ANA tests, but they "can't be sure." They think it is some type of auto-immune disease. She is on high doses of steroids, and had tapered off to a low dose, then a week or so ago, she developed a full-body lesionar rash. Steroids aren't working for it, and doctors are not sure what to do. She has gone to a rheumatologist, dermatologist, etc. She is in Taiwan. I would be interested in hearing what type of symptoms you have, what medicine(s) they are using to treat it, and any other "strange" symptoms you have. Also, what tests they used to diagnose it. If you don't mind sharing, I would love to hear from you. Also, I wish you the best of luck. My sister gave my daughter a book about living with lupus titled, "You Don't Have to be Healthy to be Happy." Was encouraging to my daughter. 🙂

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Do you know what her CK is? I know that they had a hard time diagnosing me? Have they done and EMG and other test. As far as I know it is not a black and white thing, it is based on symptoms and and there is a wide variey in the range

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My oldest daughter was diagnosed with Systemic Lupus in 1988. She had symptoms that can match many of the auto immune diseases. Within her first week she could not turn a door knob or hold a hair dryer and couldn't hardly get out of bed. She also developed the tradional butterfly rash on her face. The
top of her head would hurt so bad she thought it was going to come off. She would get the welts and swelling in her face, that made it look like someone had hit hurt many, many times. Swelling over an eye that literally stuck out half to 3/4".
I took her to a MD in Washington State who also was combining Traditional medicine. We went through numerous tests and over the next months did a lot of MD controlled cleansing and nutrition. These didn't correct the issue, but was very evident it helped. She had to become very nutritional oriented which has had a lot of influence on whether she had flare-ups or not. She has recently been tested for Gluten Intolerance and very definitely Gluten is a problem. It has been suggested that 90% of Lupus patients have varying intolerances of Gluten. Many quite extreme.
Creating a lifestyle of less stress and getting a proper amount of rest are extremely important. We found out early in her Lupus experience that Alfalfa was a no-no, as you probably already know. She then got pregnant with twins, which was sort of a kick in the pants, as you are a high risk patient in pregnancy.
Numerous needs of more rest for her going through that. Babies were born early, which is expected in Lupus patients. Everything went fine and twin girls are now going to be Seniors in High School.
We went through all the initial testing for Lyme disease and many other things with auto-immune like symptoms, but ultimately the tests from UCLA Med. Ctr. determined it was Systemic Lupus.
To this day she has spent many hours researching and combining MD and traditional therapy's and treatments to help her Lupus.
When she was diagnosed in 1988, there wasn't a lot of helpful information, mostly all negative as far
as living very long with Systemic Lupus.
I, as her father, was not willing to accept that totally negative picture that was painted and set out to find whatever it was that would help. Even though there are no knows cause's that I know of.
Again, we found others that weren't willing to adjust their life style and have gone through way more trials with their Lupus, because of those decisions.
A person has to be as positive as possible and not give in and let this disease win. Most individuals are different in life styles and the history of their life. My daughter has never drank alcohol or smoked, even
though it was not strictly forbidden, that was just not something she ever did, and which was best for her and her future challenges.
She still has to take a small amount of Prednisone to help control some slight symptoms, but she is grateful that she has been able to control the hugh flare-ups she use to have. Good Luck & God Bless

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@stu

My oldest daughter was diagnosed with Systemic Lupus in 1988. She had symptoms that can match many of the auto immune diseases. Within her first week she could not turn a door knob or hold a hair dryer and couldn't hardly get out of bed. She also developed the tradional butterfly rash on her face. The
top of her head would hurt so bad she thought it was going to come off. She would get the welts and swelling in her face, that made it look like someone had hit hurt many, many times. Swelling over an eye that literally stuck out half to 3/4".
I took her to a MD in Washington State who also was combining Traditional medicine. We went through numerous tests and over the next months did a lot of MD controlled cleansing and nutrition. These didn't correct the issue, but was very evident it helped. She had to become very nutritional oriented which has had a lot of influence on whether she had flare-ups or not. She has recently been tested for Gluten Intolerance and very definitely Gluten is a problem. It has been suggested that 90% of Lupus patients have varying intolerances of Gluten. Many quite extreme.
Creating a lifestyle of less stress and getting a proper amount of rest are extremely important. We found out early in her Lupus experience that Alfalfa was a no-no, as you probably already know. She then got pregnant with twins, which was sort of a kick in the pants, as you are a high risk patient in pregnancy.
Numerous needs of more rest for her going through that. Babies were born early, which is expected in Lupus patients. Everything went fine and twin girls are now going to be Seniors in High School.
We went through all the initial testing for Lyme disease and many other things with auto-immune like symptoms, but ultimately the tests from UCLA Med. Ctr. determined it was Systemic Lupus.
To this day she has spent many hours researching and combining MD and traditional therapy's and treatments to help her Lupus.
When she was diagnosed in 1988, there wasn't a lot of helpful information, mostly all negative as far
as living very long with Systemic Lupus.
I, as her father, was not willing to accept that totally negative picture that was painted and set out to find whatever it was that would help. Even though there are no knows cause's that I know of.
Again, we found others that weren't willing to adjust their life style and have gone through way more trials with their Lupus, because of those decisions.
A person has to be as positive as possible and not give in and let this disease win. Most individuals are different in life styles and the history of their life. My daughter has never drank alcohol or smoked, even
though it was not strictly forbidden, that was just not something she ever did, and which was best for her and her future challenges.
She still has to take a small amount of Prednisone to help control some slight symptoms, but she is grateful that she has been able to control the hugh flare-ups she use to have. Good Luck & God Bless

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Thank you so much for the encouragement and helpful information. I will pass it on to my daughter!

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@stu

My oldest daughter was diagnosed with Systemic Lupus in 1988. She had symptoms that can match many of the auto immune diseases. Within her first week she could not turn a door knob or hold a hair dryer and couldn't hardly get out of bed. She also developed the tradional butterfly rash on her face. The
top of her head would hurt so bad she thought it was going to come off. She would get the welts and swelling in her face, that made it look like someone had hit hurt many, many times. Swelling over an eye that literally stuck out half to 3/4".
I took her to a MD in Washington State who also was combining Traditional medicine. We went through numerous tests and over the next months did a lot of MD controlled cleansing and nutrition. These didn't correct the issue, but was very evident it helped. She had to become very nutritional oriented which has had a lot of influence on whether she had flare-ups or not. She has recently been tested for Gluten Intolerance and very definitely Gluten is a problem. It has been suggested that 90% of Lupus patients have varying intolerances of Gluten. Many quite extreme.
Creating a lifestyle of less stress and getting a proper amount of rest are extremely important. We found out early in her Lupus experience that Alfalfa was a no-no, as you probably already know. She then got pregnant with twins, which was sort of a kick in the pants, as you are a high risk patient in pregnancy.
Numerous needs of more rest for her going through that. Babies were born early, which is expected in Lupus patients. Everything went fine and twin girls are now going to be Seniors in High School.
We went through all the initial testing for Lyme disease and many other things with auto-immune like symptoms, but ultimately the tests from UCLA Med. Ctr. determined it was Systemic Lupus.
To this day she has spent many hours researching and combining MD and traditional therapy's and treatments to help her Lupus.
When she was diagnosed in 1988, there wasn't a lot of helpful information, mostly all negative as far
as living very long with Systemic Lupus.
I, as her father, was not willing to accept that totally negative picture that was painted and set out to find whatever it was that would help. Even though there are no knows cause's that I know of.
Again, we found others that weren't willing to adjust their life style and have gone through way more trials with their Lupus, because of those decisions.
A person has to be as positive as possible and not give in and let this disease win. Most individuals are different in life styles and the history of their life. My daughter has never drank alcohol or smoked, even
though it was not strictly forbidden, that was just not something she ever did, and which was best for her and her future challenges.
She still has to take a small amount of Prednisone to help control some slight symptoms, but she is grateful that she has been able to control the hugh flare-ups she use to have. Good Luck & God Bless

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You are welcome. Just for info, my daughter was 23 yrs old when diagnosed. Now 46. And yes she has Raynaud's Syndrome also, which is pretty normal with Systemic Lupus. She also took a Anti-Malaria drug leading into the Prednisone.
I have known people that went for months and years without a diagnosis. A Rheumatogist initially said, lets just wait and see what happens. We never went back to him. I immediately took my daughter to a friend who was in Internal Medicine and said we are not going to wait, we are going to do any and whatever tests necessary to find out what this is.
At that time, there were only 2 facilities testing for the Anti-bodies for Lupus, one at UCLA and one back east. Blood samples were sent from Montana to UCLA and we had the answer within the week, and then started pursueing any and all avenue's for
solutions.
Unfortunately, we are still looking for a cure to whatever the cause was.
My daughter had major knee surgery some weeks prior to this event along with our
family losing a 3 yr. old grandson of our son, to a rare form of cancer. At that time only 13 known cases in the U. S.
I only mention this to bring up the fact that stress is or can be a major factor, it appears,
in altering the chemical balances in the body that can protect us.
Perhaps her"s was an offshoot of some freak breakdown of the balance's in her body,
compounded by a huge amount of stress.
Again, important for everyone to link arms and pursue and fight.
Have a good day.

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@roysbaby

I do just diagnosed no one to talk too

Jump to this post

I have MCTD with interstital lung disease but lupus is muxed in there too. Also have the Raynauds and idiopatic pulmonary fibrois because of the mctd. I just turned 35 and was diagnosed in January and my health has been failing fast. I don't know how long I have been having it though I noticed my hair falling out 3 years ago.

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