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Answers To Your Questions
We get lots of questions from
several different sources. Because we know these answers can
help more than just the asker, we will post them here. You can
ask a Lupus question here.
 Email
Question:
Hi I suffer from SLE and I am a student at
Georgia State
University, and I wanted to know if there
is a scholarship for lupus patients and if there isn't a
scholarship how do I go about creating one?
Answer:
I am not aware of any scholarships for
Lupus patients. I think it is a great idea however! I
would write to the Lupus Foundation of America and the
Alliance for Lupus Research about establishing such a
scholarship. Best of Luck!
MySpace
Question:
I am looking into getting a stem cell transplant is there any
one you could direct me to for more info~ thanks
Answer:
As far as I am aware the only ones
being conducted on adult Lupus patients in the US are at
Northwestern University in Chicago, and Stanford University
in California. Here is a link to the clinical trial page:
http://www.clinicaltrials.gov/ct2/results?term=lupus+stem+cells
Email
Question:
IS IT OK FOR A PERSON WITH LUPUS TO HAVE A
BODY WRAP. I also have
fibormylia and believe the
wrap would relive some of the pain.
Answer:
There is nothing about a body wrap that
I know of that would affect Lupus. I have never heard
anything against them with Lupus. Checking with your doctor
is the best way to know though!
Email
Question:
I have had the lupus diagnosis for 5 years
(agreed with by some doctors and denied by others. As you know,
this is so confusing.) My question is: Can lupus cause uterine
problems? I am having abdomenal pain and frequent irregular
periods. The pain is present even when I am not
having my menstral cycle. I recently went
to my Ob-gyn for an ultersound and he said that my uterine
lining is extremely thin at 4 mm. After questioning him, he said
that this be caused by inflammation. Is this correct and can
anything be done to help this? The only info I can find said
that it can be caused by infection, and I have no infection
present. Thanks for your time.
Answer:
I have never heard of this problem,
however Lupus can affect ANY part of the body, so,
theoretically, it would make sense that it is possible. I
am sorry I don't have more information. I would suggest
discussing this with your rheumatologist as well as maybe
getting a second opinion from a GYN with experience with
this condition.
Email
Question:
how do you deal with lupus when its messing
with your physical and
personal life??
Answer:
Lupus can be very disruptive. My best
advice is to do everything you can to keep it at bay, take
your medication, avoid triggers, etc. When you can't avoid
it try not to fight it too hard. I know that sometimes I
get indignant and push through, but that only makes it
worse. I find if I take my rest I am better faster. Also,
having a support system is key! You need people to talk to
who understand what it is like, people who can help you get
through the day to day when you just can't, and you may
consider talking to a professional, dealing with a chronic
illness is not easy and sometimes a counselor or
psychiatrist can help. Best of Luck!
Email
Question:
My Mother has Lupis, it seems like a year
after year she has more mentasl problems. Things like paronoia
and Schizophrenia, is this from the Lupus? I am trying to find
out as much as I can, she has had it for about 18 years and it
seems like latley her health is declining. Thank you for your
time.
Answer:
Lupus can cause mental problems.
Medications used to treat Lupus can also cause mental
problems. If it is a new thing and she has had Lupus for a
long time, new medications would be a good place to start
your investigation. If it is something that has come on
gradually over years, Lupus is a possibility. Lupus can
cause anxiety, depression, cognitive dysfunction, or central
nervous system vasculitis which can lead to psychosis. This
symptom is on the rare side, but it does occur.
Another possibility is something I know
first hand, dealing with chronic pain, chronic fatigue, a
life threatening illness, coupled with life's normal
stresses can wear on your psyche. For me it was mostly
about not being able to work anymore, being isolated in bed
most of the time, feeling terrible, etc. Dealing with these
things drove me into a very deep depression that included
paranoia and other mental issues. I got treatment with a
psychiatrist with medication and talk therapy, as well as
began finding ways of reaching out to others (through this
website) as much as possible. I no longer have the extreme
depression or paranoia.
I definitely recommend
speaking to a doctor about these concerns, whether it is a
psychiatrist or just your family doctor/rheumatologist.
Email
Question:
whats your opinion on taking
methotexate?
Answer:
Methotrexate is certainly a very
serious drug and it can have very serious side effects. As
with all medications, it is important to weigh the risk
against the reward. For patients with severe, major organ
involvement, severe treatments such as methotrexate can be
the only thing that stops the Lupus and saves lives. In
those cases the side effects are a tolerable trade off where
they may not be in less severe cases. Also, an important
thing to remember is that all medications affect different
people different ways. Some people may have severe
reactions to methotrexate while others have little or no
side effects. Whether to take a certain treatment of any
kind is a very individual decision between you, and your
doctor(s).
Email
Question:
I have had SLE for about 3 years now, I
recently started getting tiny red spots on my nose they are flat
for now but haven't pin pointed an exact name yet for them
please let me know so I can properly know how to
treat them.
Answer:
Thanks for your question, so sorry it
took so long to respond, I have been down with a flare. It
is very difficult to say what they could be since we are not
doctors and we can not see what they look like. However,
from the way you describe them Petechiae is a possibility.
Petechiae are very small (pinpoint) red spots on the skin
caused by bleeding under the skin and can be caused by
vasculitis or thrombocytopenia. Other possibilities include
discoid rash, malar rash, or other skin rashes and
conditions perhaps not even related to Lupus.
Email
Question:
I would like to
order checks for my personal checking account with
the lupus awareness as the design
Answer:
Here is the link to
checks with purple ribbons on them:
http://www.messageproducts.com/shop/product.aspx?ProductID=8MRUPCHK(Base)&CategoryName=&SubcategoryName=CKMISC-MP(Base)&CategoryCode=PCHK.
And if you want checks with butterflies on them, a portion
of the purchase price is donated to the Lupus Foundation,
here is the link:
http://www.classicchecks.com/shop/product.aspx?ProductID=P90PCHK(Base)&CategoryName=&SubcategoryName=CKSTD-CL(Base)&CategoryCode=.
Email
Question:
I have lupus, mainly on the skin. For
almost a month now I have been itching like crazy. I took a
course of steriods and it didn't help. What do you suggest I
try?
Answer:
Depending on the severity
antimalarials such as Plaquenil or immunosuppressives may
also be used to treat Lupus. Topical steroids may be used
to treat skin rashes as well as systemic steroids. Here is
a link to more information on
Lupus Treatments
Email
Question:
is genetic a possible risk
factor for lupus
Answer:
The cause of
Lupus is still unknown however, researchers do think it is
caused by a combination of genetic and environmental
factors.
Email
Question:
I am currently trying to figure out what is
wrong with me but feel like the specialist is brushing me aside.
I tested positive for Lupus but the number was low and there was
another test I also tested positive but she would not give me
any numbers- told me not to focus on it. I recently
found a photo of a butterfly rash of my
face and the cardiologist (that she is making me see) flat out
said I was in active Lupus. My Rhumetologist looked at it and
sat it aside, NEVER EVEN RESPONDED. She instead is
convinced it is cardiac and not Lupus. I
have other signs- Raynauds, aching muscles and joints, fatigue
and now aniexty attacks. I also have a strange tightness in my
throat. I also saw on your website about the Plaquenil
Allergic which I have had several years off
and on. I was told it was being in the flower garden or scabies?
I was furious with my family doctor when I saw the photos on
your website. I am at the end of rope - what can I do? Do
you think she is right?
Answer:
Thanks for your question. I am sorry
to hear you are having such a rough time! It definitely
seems possible to me that your symptoms are caused by active
Lupus. Below is some information on some tests that are
used by Rheumatologists to help determine Lupus activity.
If you are uncomfortable with the
tests your doctor(s) are running, the communication they
give you, or any other aspect of your treatment, we always
recommend a second opinion. Doctors vary a lot in
knowledge, experience, and communication style. Learning as
much as you can about your body and your disease are also
important to building productive relationships with your
doctors.
Email
Question:
I went to the dr. yesterday for a check up
the dr told me that I hyperthyroidisum and that my lupus and
fibro have mysteriously disappeared and that because the bllod
work did not show any thing I don't have it any more .butin all
the other medical records it says that i do. what is wrong
with this picture
please help i am confused.
Answer:
It is very
possible for Lupus to "disappear" on blood work if you are
in remission. I personally do not currently show Lupus
antibodies in my blood. That does not mean you don't have
Lupus. Once you have Systemic Lupus, it is permanent, there
is no cure. It is possible to have a diagnosis that is
later revealed that you never had it in the first place.
Another possibility is that if you had Drug Induced Lupus,
that can go away when the offending drug is stopped. Here
is a link to more info on the
kinds of Lupus.
There is no
blood test to indicate Fibromyalgia, so I don't know where
that was coming from.
My best advice
is always to get a second opinion anytime you are
uncomfortable with your doctor or their diagnosis.
Email
Question:
Last Spring I was diagnosed with Lupus,
Sjogren's, Fibromyalgia. A skin biopsy determined that it was
cutaneous lupus, not SLE. Several months later I was also
diagnosed with a mild Traumatic Brain Injury not seen in imaging
after a previous auto accident. I am now on 400 mg of
Hydroxychlor, Adderall and undergoing outpatient rehab for the
brain injury. My symptoms
overlap from all of these conditions and
given each doctor tends to only looks at me from their area of
specialty or the do not fully understand the implications of
autoimmune involvement, how do I best coordinate my overall
care? My current team of doctors include a physiatrist that
oversees my brain injury rehab process,family physician,
neuropsychologist,
rheumotologist, dermatologist and
opthamologist. My conditions include: cognitive and memory
dysfunction, confusion, lack of concentration, erratic sleep
patterns, brain fog, dizziness, nausea, vision changes, blurred
vision, dry eyes/eye pain, spati! al
disorientation, vestibular
Answer:
I know first hand exactly what you are
talking about. I also have several conditions and about a
half dozen different specialties. I have had a lo of
trouble over the years with doctors only looking at things
from the perspective of their specialty and not really
considering the whole picture. One reason for this is you
are a special case and most likely the doctors haven't dealt
with your combination of conditions/symptoms before.
Medicine is not an exact science. I unfortunately don't
have much in the way of advice. A few things you can do to
help this situation is to make sure yourself as
knowledgeable about your conditions and your body as
possible. Also, make sure you have doctors that are A. on
their game (knowledgeable, current, etc.) B. listen to you
and your concerns. If you are uncomfortable with a doctor,
you can always get another opinion. Also, your primary
doctor can be helpful with this. While they typically are
not very knowledgeable about these conditions, they can be
helpful in answering questions in a way that you can
understand, making sure your medications do not interact
badly, and communicating with other doctors your concerns.
Hope this helps!
Email
Question:
Hi,I was diagnosted with lupus about a year
ago, and my doctor has exsplained that I should wear sun screen
everyday, and to avoid the sun.She also told me that as long as
I wear sunscreen I could go to the beach, swim or fish in the
sun...ect., but to wear sunscreen and keep
applying it threw out the day. My husband
thinks that this is totally wrong that the doctor is giving me
wrong advise, and that I should get a new doctor because this is
wrong, the doctor says you have to go on with your
life, and make it as normal as possible. do
you agree with the doctor or my
husband? thanks this web site
is so helpful.
Answer:
Thanks for your
question, I would have to say that it totally depends on
you. We all want to be as "normal" as possible but we also
have to accept that we do have limitations. While
photosensitivity is one of the most common Lupus symptoms,
not every patient has it, and it can come and go. There is
also a broad range of severity, for some people 5 minutes in
the sun can cause a major flare and for others they might
just burn easily. My best advice would be to get to know
your body so that you can understand the possible problems
and weigh that against what you want to do.
For instance
just this week I was on vacation with my family. They
wanted to go out on a boat all day. I had to decide that I
wanted to be with my family and have fun so I applied sun
screen every half hour, stayed in the shade as much as
possible and covered my exposed areas with towels. I had a
great time! I was exhausted and sore for 2 days afterward,
and even after the precautions I was a little burnt, but it
was worth it. We can do what we want, we just can't always
do it as much as we want. I wouldn't be at the beach
everyday but if you want to go every once in a while and you
have time to recover afterwards, go for it. Doctors are not
always sympathetic to the toll it takes on you because
unless you have experienced it you really don't know what
that exhaustion and pain feel like.
Email
Question:
One of the worst lupus symptoms I have is
sensitivity to
flourescent lights. I have a reaction when
exposed. My skin burns. I get rashes. My nervous system becomes
agitated. Fibro symptoms and pain increase. I get chills that
last for hours. My eyes are sensitive to the
lights. I get headaches and feel terrible.
I try wearing a strong sunblock. This helps a little, but I
still feel sick each time I am exposed. What can I do? The 70
sunblock helps me, but I still have reactions. I have learned
that flourescent lights emit low levels of
uvb rays. And now, I hear in the news that our govt is trying to
get us to stop using incandescent lights in our homes and force
us all to use flourescent lights! Where are the lupus
advocates? Why do the governmental
officials NOT know the dangers for lupus patients with these
lights? Why isn't someone educating them? I don't understand how
we could have gotten to this point that everywhere we go, there
are flourescent lights, even
in doctors' offices and hosp
Answer:
This is a very
hot topic in the Lupus Community right now. It is true that
a bill was put into law that requires all incandescent light
bulbs to be slowly phased out and be replaced with compact
fluorescent light bulbs (CFLs). While this is great news
for the environment, it is terrible news to Lupus sufferers
that are photosensitive because the CFLs emit UV rays
causing all sorts of Lupus symptoms and flares.
The Lupus Foundation of
America is very concerned about this issue and has asked
individuals who have been affected by these light bulbs to
send in their stories so that the LFA can take them to
lawmakers. Please write your story about how CFLs have
affected you and send it to us at Cure4Lupus.org, 7711
Airline Ave., Urbandale, IA 50310 and we will pass it on to
the advocates working on this issue. Please also include
your name, address, phone number and email. You also need
to sign a waiver allowing the advocates to share your
story. You can find the waiver on our
CFLs & Lupus page.
Email
Question:
Is Lupus heredetary
Answer:
The cause of
Lupus is still unknown. Researchers do however believe that
it has a genetic factor mixed with by an environmental
"trigger".
Email
Question:
I have been trying to be diagnosed for the
last 5 years. I am 33 years old. My doctor does not want to
diagnose me because I have not had a positve ana and my sed rate
is normal. I do have chronic leukopenia as well
as other blood chemistry abnormalities. I
recently have been having wbc and rbc and abnormal gravity in my
urine as well as epithleal cells. I also had a spinal tap done
which was positive for protein. I had a complete ms work up and
I have 4 brain lesions which they say are not ms and they cannot
find a cause.I do have a face rash. I also have what they feel
are large fatty areas in my liver( I am of normal weight and do
not drink or smoke.) Am I
wasting my time looking in this direction?
I am so tired of being in constant pain and having mind numbing
fatigue every day. I would welcome any feedback you have to
offer.
Answer:
I am sorry to
hear you are having such a rough time! You are obviously
having some major symptoms and they need to be treated. It
is certainly possible that it could be Lupus. Lupus can be
so difficult to diagnose because it can be so different from
one person to the next and it can be similar to many other
diseases and conditions. My best advice to you is just to
keep pushing. You have something wrong and somebody needs
to figure it out. If you don't think your doctor is
aggressive enough, get a second or even third opinion! Here
is a link to more information on
Lupus Diagnosis
Email
Question:
Can people with lupus have
babies?
Answer:
It totally depends on the
person, how severe the Lupus is, and what body parts are
affected. Lupus, and the medications used to treat it, can
sometimes cause infertility. For some women that can get
pregnant there are a lot of complications. For other women
Lupus causes little or no effect on pregnancy. Here is a
link to more information on
Lupus &
Pregnancy.
Email
Question:
Hi, I am currently having tests for Lupus
due to various
symptoms. My quetion is, my grandmother had
Rheumatic fever 3 times, my mother has Thyroid problems and my
sister had Erythema Nodosum when she was 15. Is there a link
between these illnesses that would make me more likely to get
lupus. I am seeing a consultant at the London Lupu clnic this
week, is it worth mentioning the above. I would be really
gratefull for any
information on this, thanks...
Answer:
It is
always important to let your doctors know your entire
family history, everything matters. Most doctors will
wither ask or have a form for you to write it.
Autoimmune diseases do tend to run together in families
and individuals. Rheumatic Fever and Thyroid Disease
can both be autoimmune, I am not sure about Erythema
Nodosum.
Email
Question:
Thank you for your
question. The best source for doctors in your area that treat
Lupus is the Lupus Foundation of America chapter nearest you.
Here is a link to the
list of chapters
Answer:
I was just recently diagnosed with
lupus in May 08. I was also diagnosed with Raynaud's and
Sjogrens. I am very confused about all of this.
My rheumatologist ordered an ANA panel
and when the results came back he said I did in fact have
lupus and prescribed Plaquenil and Salagen. My doctor never
told me exactly what lupus was or what I can do to help the
symptoms. Everything I know I have learned on the internet.
I told my doctor at my last appointment that I've been
keeping bad headaches, memory problems, extreme fatique and
I've been have trouble breathing and he told me that I have
to go to my PCP to be treated for that. And my PCP said
that's something the rheumatologist should deal with. I
would like to find another rheumatologist, but I was told by
my PCP that there's only 2 in the
state of WV. Can someone give me some
advice on how to find another
rheumatologist or at
least a doctor who can help with lupus.
Email
Question:
Would an ANA titer of 1:640 be found in a
person with
fibromyalgia or a person with lupus?
Answer:
An ANA tier of 1:640 could be found in
a person with Lupus, a person with another autoimmune
disease, a person with Fibromyalgia, or a person with no
disease at all. The ANA test is not specific. One thing
used to help distinguish is the pattern of the ANA. Here is
a link to more information on
ANAs. Depending
on the symptoms that go with it, an ANA of 1:640 would
indicate that more tests need to be run. Here is a link to
more information on
Lupus Diagnosis.
Email
Question:
Hi, last year I got diagnosed with lupus.
They put me on some medication that has helped with my body
aches. Recently I got strep throat, and pennicillen didn't take
it away so I had to take another med, then it go worst, they had
to give me steriods by IV and also a antibiotic by IV. The
doctors said I couldn't get rid of the infection cause my boby
has lupus and it can't fight the infection, so that is why I
need steroids. Is there any other drugs that would hep my immune
system work beter then have to go threw this again?
Answer:
Unfortunately when you have Lupus you
don't want to strengthen your immune system because your
immune system, instead of attacking the strep bacteria,
attacks your healthy tissues. We, as Lupus patients, are
typically prescribed medications that suppress your immune
system, preventing it from attacking your joints, kidneys,
skin, etc. Susceptibility to infection is one of the most
common and most dangerous parts of Lupus and the medications
used to treat it.
The best things you can do to prevent
that from happening again is to keep the Lupus is remission,
practice good hygiene, wash your hands frequently, avoid
contact with people with infections, make sure you are up to
date on all vaccines (including a flu shot every year and a
pneumonia shot every 5 years) (not live vaccines), practice
safe food handling procedures, and get medical attention
whenever you have a fever or suspect infection.
Here is a link to more information on
opportunistic infections. And
Lupus Treatment.
Email
Question:
Please help me find out what is wrong
with my daughter. She has had too many symptoms in the past
year for them not to be linked somehow. I have read a little
on Lupus and am wondering if this might be her problem.
First, for 3-4 years she has had severe pain in her knees.
Last year she was told that she has some kind of patella
disease. 3 months ago she experienced a loopy feeling for
over a week, almost like she was drunk. An MRI showed
lesions on the brain. A spinal tap was
negative for MS. Two months ago she went to the ER with
severe pain in her right abdomen. Tests showed a
nonfunctioning gallbladder and it was removed. Yesterday she
awoke with severe pain again this time in her hip. The
doctor diagnosed her with tendinitus. She is 19, 5 ft 4 in
tall, and weighs about 115 pounds. She seems to have a lot
of joint pain and swelling in her hands, fingers, and feet.
Any advice or suggestions will be greatly appreciated. Thank
you.
Answer:
Lupus, and other
autoimmune diseases, very often appear in the beginning
as a string of unconnected illnesses until somebody
says, wait a minute, there must be some connection
here. Your daughter's story sounds quite similar to
mine actually. I started out with knee pain, followed
by tendonitis in my ankles, followed by abdominal pain,
followed by headaches, followed by swelling and pain in
my fingers and elbows. I highly recommend you talk to
her doctor about your suspicions and get some blood work
done. If her doctor is dismissive, get a second
opinion. She definitely has ample reason to test for
Lupus and other autoimmune diseases. Here is a link to
more information on
Lupus Diagnosis and the
tests used to
diagnose and/or rule out Lupus.
Email
Question:
I WAS DIAGNOSE WITH LUPUS IN FEB 06, I WENT
THROUGH CHEMOTHERAPY AND FROM THERE ON I CAUGHT THE CMV. NOW I
JUST RECENTLY DISCOVER SOME NEW SYMPTOMS THAT MY RIGHT SIDE OF
MY JUST GOES NUMD ESPECIALLY WHEN I LAY DOWN AND WHEN SITTING UP
I DID A CT SCAN OF MY BRAIN AND NECK AND IT CAME BACK NORMAL AND
ALSO A MRI OF THE SAME AND THEY CAME BACK NORMAL AS WELL. SO I
WOULD LIKE TO KNOW WHY IS MY EXAMS COMING
BACK NORMAL IF IM HAVING THESE SYMPTOMS. I ALSO WOULD LIKE TO
KNOW IF THERE IS ANYONE ELSE LIVING WITH
LUPUS HAVE THESE SAME
SYMPTOMS AS MYSELF
Answer:
Lupus can be so
confusing! It can cause just about any symptom. This is
not really a know symptom but it is certainly possible. It
could be Lupus attacking your nervous system. It could also
be a side effect to medications used to treat Lupus. It can
also be a symptom of Fibromyalgia. Fibromyalgia is common
in people with Lupus. Numbness, tingling and "electrical
feelings" are know symptoms of fibro. Here is a link to
more info on
Fibromyalgia.
Email
Question:
I have an ANA titer of 1:640 with a
homogeneous pattern. All of the other lab work is normal escept
for a defficiency of vit. D. I have joint pain, but not
swelling, severe headaches, extreme fatigue, dizzy spells,
muscle pain and weakness. My question is - how likely is this to
be lupus. My rheumatologist thinks I have fibromyalgia. Would
fibro have an ANA of 1:640?
Answer:
Thanks
for your question. Firstly, no, fibromyalgia does not cause
a positive ANA, however a positive ANA can be caused by
several autoimmune diseases or it can also be found in
healthy individuals. The homogeneous pattern is the most
commonly found pattern in healthy individuals, but it can
also indicate Lupus, especially in high titers, or other
autoimmune diseases. It seems you have some symptoms that
could possibly indicate Lupus but they could also indicate
Fibro. In order to diagnosed Lupus you must have 4 of the
ACR's 11 criteria. Here is a link to more information on
diagnosis, the ACR's
criteria and ANAs. If you are uncomfortable
with your diagnosis, we always recommend a second opinion.
MySpace
Question:
My doctor wants me to go on it.. but I have
talked to 2 doctors and other people that say no way, it is
really bad.. I am confused. Can you tell me your thoughts..
Thank You
Answer:
I have personally never been on it. I
am on CellCept which seems to work well for me without too
many side effects. Every patient is different though.
I can tell you that it is a serious drug with serious side
effects! However, if you have major organ involvement, that
is also very serious and requires serious drugs. It is a
matter of weighing the side effects against what it is
treating. Your doctor should be able to explain why they
want you on that drug and what the risk vs. reward is. If
your doctor can't/won't do that, you can always get a second
opinion.
Here is a link to more info on
treatments including
Methotrexate.
Email
Question:
I have Sle lupus and just had a colonoscopy
done. is it possible to have another autoimmune disease like
crohns disease with lupus?
Answer:
Thanks for your question. Yes, it is
not only possible but autoimmune diseases tend to run
together in families and in individuals.
Email
Question:
I tested positive on both ANA 1:640 and SMA
1:160, have low WBC 3.2, have a lot of physical symptoms (but no
rash), but yet because my antiphospholids were ok, and i was neg
for dsDNA, I was told by 2 doctors I should not be treated for
SLE. But my mother's dr said I should because my symptoms fit
the disease. I am not insured to see him. Do I get treated for
a maybe, or do I
celebrate and forget about it. Who do I trust?
Answer:
I would get a
fourth opinion. It is dangerous to treat a disease you have
not been diagnosed with. It is equally as dangerous not to
treat a disease you have. If you are not comfortable with
your diagnosis, we always recommend another opinion. You
obviously have some irregular blood work and symptoms. I
would however, suggest considering other autoimmune diseases
in addition to Lupus. Here is a link to more information
on Lupus diagnosis.
Email
Question:
I live in Oak Ridge TN. I have had many
lupus problems, and it is hard because I do not have a doctor
that specializes in lupus, all I have is a family doctor. the
thing is I have been having many problems with my
stomach. I can't keep food down, I have
stomach pain every morning, and the medications I am given have
not done anything to help. They help for a short time and then I
have the problems again. I want to know if there is any way for
me to find a doctor that can help me that knows more about
lupus. Please let me
know. Thank you
Answer:
Thank you for
your question. Rheumatologists are the doctors that most
often treat Lupus. You can find out about the
Rheumatologists in your area by asking your family doctor or
contacting the chapter of the Lupus Foundation closest to
you. Here is a link to the Nashville LFA chapter:
http://lupusmidsouth.org/ Their phone number is
877-865-8787.
Email
Question:
HOW EXACTLY DOES
THE SUN AFFECT OR BRING ON A LUPUS FLAIR IN SYSTEMIC LUPUS
Answer:
For some Lupus sufferers
sunlight can cause a rash. It can take only a few minutes
of being in the sun without protection. For others contact
with sunlight or other sources of UV light can trigger a
flare. Flares can be triggered by many different things
depending on the person and varying in the same person.
Stress, other sicknesses, too much/little physical activity,
certain foods or sunlight are all common flare triggers.
Researchers do not know the details of exactly why this
occurs, much more research is needed.
Email
Question:
Will my memory ever get better? I've had
Lupus for 4 years and it
sure doesn't seem like it
will. Give me some hope.
Answer:
Theoretically it is
possible depending on what is causing the memory problems.
Some medications can cause memory loss, if that were the
case it could clear up if your doctor was to take you off of
that med. Sleep deprivation is another cause that could be
reversible. Lupus "brain fog" can come and go in some
people. Memory loss can also be caused by age which I am
sorry to say is just part of life.
Email
Question:
How does one get Lupus?
Answer:
Researchers still do not know what
causes Lupus. They do believe that it is a combination of
environmental and genetic factors. Lupus is not contagious.
Email
Question:
I am exhibiting alot of these symptoms I
also have this rash that I have been fighting with on my
tailbone that gets bad after tanning even though I keep it
covered. I recently had a positive ana titer but it was low only
1:40 (speckled). Do you think I should ask the doctor to test me
for lupus? My husband and mother really wants me too because I
have been having these symptoms off and on for several years .
Answer:
Thanks for your
question. Having an ANA is one of the first steps in Lupus
diagnosis. A positive one, even mildly, coupled with
symptoms such as photosensitivity should prompt further
testing. Your general practitioner may or may not be
familiar enough with autoimmune disease to push for further
testing. You could either push hem for it, or go to a
rheumatologist for further testing. Depending on the doctor
and your insurance situation you may need a referral.
Knowledge is power so we always advocate getting more tests
when you are uncomfortable with your diagnosis or lack there
of. Here is a link to more information on
diagnosis
Email Question:
My 16 year old daughter has a problem
staying awake in school. She sleeps on the average 8-10
hours a night. She complains of fatigue & weakness. I took her
to her family doctor to have a blood work up done on her. I am
her mother & I have lupus. Her blood work came back great except
for her ANA levels, they were high. Her SED rates were all
within normal range. I know the ANA test is used for other
diseases too. The doc says we will monitor her. Does this mean
she maybe developing lupus? What are the
chances of me passing this
gene onto her? Thanks you
Answer:
Researchers have not
found a "Lupus Gene". They do suspect that there is a
genetic factor combined with environmental factors that
cause Lupus. About 5% of the children born to people with
Lupus will develop Lupus. All autoimmune diseases tend to
run in families so while Lupus is a possibility, another
autoimmune disease is also a possibility. Many autoimmune
diseases tend to have similar symptoms. Also a positive ANA
can indicate other autoimmune diseases as well as no disease
at all. The pattern of the ANA can be very helpful in
distinguishing which disease it may be. Here is a link to
more information on ANA
Tests.
Email
Question:
my grand daughter has lupus started at age
fifthteen and we are completly unknown to us what to expect in
years to come the doctors keep putting her in the hospital every
two months for test and treatment but
dose,nt explain much to my
daughter is there something wrong there?
Answer:
You should
always feel "in the loop" with your doctor. You have the
right to know what is being done and why. If your doctor
can't or won't explain things to you in a language you can
understand you may want to consider finding a new doctor.
There is also a wealth of information available on the
Internet, however you do have to be mindful of the source,
there is also a lot of mis-information out there!
Email
Question:
My grand-daughter, Samantha, age 7 has just
been diagnosed with Lupus and Vasculitis. The Vasculitis cleared
up since she was put on medication in the hospital about 3 weeks
ago. I am devistated that Lupus can hit a child at such a young
age. My daughter and Sammie's dad had Sammie in and out of
doctors office for a very long time. It took until she was in
such pain one night that Sam's parents had to rush her to Chop's
ER before the docs put her inpatient and kept her there until
the diagnosis was confirmed. It was a horrifying experience to
see such a young BEAUTIFUL
little girl suffer in such a
way as this terrible disease.
Answer:
I am so sorry
to hear this story. We are fighting every day to find a
cure for this disease so that these things stop happening.
Our best and brightest are being struck by a horrible
illness and we have to find a way to stop it! In the
meantime, we are also fighting to raise awareness with both
doctors and the public so that diagnosis can be made more
quickly and easily. Thanks for your support. Best of Luck!
Email
Question:
WHAT CAN YOU DO TO PREVENT GETTING LUPUS? I HAVE A FRIEND AND
SHE DIED MAY 2, 2008 FROM LUPUS. IS LUPUS SIMILIAR TO CANCER? IS
IT CANCER?
Answer:
Thanks for your
question. No Lupus is not a cancer, nor is it similar to
cancer. Lupus is an autoimmune disease which means that
your immune system which normally fights off bacteria and
viruses, attacks your healthy tissues. This causes pain,
inflammation and eventually tissue damage.
Researchers do not know what causes Lupus, but they think it
is a combination of genetic and environmental factors.
Unfortunately there is nothing you can do to prevent it.
Here is a link to more information on
What is Lupus
Email
Question:
When exposed to sun for a few hours, how
long does it take to show any reactions to the sun? Even with
sunblock.
Answer:
It varies from person to person and
even from day to day in the same person. For some people
with Lupus the sun doesn't bother them at all and for others
2 minutes can cause problems.
Email
Question:
I have the malar rash, possible
fibromyalgia and various other symptoms and I am aware it could
be other diseases. I would like to know if the malar rash itches
at all and if people with Psoriasis can also have Lupus.
Answer:
He malar rash associated with Lupus
does not typically itch, however other Lupus rashes do. Yes
it is possible for a person with Lupus to also have
Psoriasis.
Email
Question:
Hello, Can you please tell me how long
flares typically last, the time between flares, and their
relation to menstrual cycles. Finally, I am wondering if one
needs to be in a flare to receive a diagnosis, or is a
Lupus diagnosis can be made
when the person is in remission.
Answer:
Thanks for your
questions! There is no "typical" length of flares or time
in between flares. Every Lupus patient is different and
even in the same person, every flare is different. Flares
can last from 2 days to even years. There can be days or
even years in between flares.
There is no
scientific link between flares and menstrual cycles, however
there is so much we still need to learn about Lupus. Some
researchers suspect hormones play a role in Lupus so it
would stand to reason that menstrual cycles could effect
flares in some way.
Lastly, it is
not necessary to be in a flare to get a diagnosis for some
patients, but for some patients they would need to be in a
flare to show the signs and symptoms. Here is a link to
more info on Lupus
Diagnosis.
Email
Question:
With lupus discoid/cutaneous if you are in
a flare an I know you can get it around your vaginal area is it
possible to pass the itchy red
rash to your partner if you
engage in sex?
Answer:
No, it is not possible to pass the rash
to your partner. While researchers still have not nailed
down a cause, one thing they do know is that none of the
different kinds of Lupus are contagious. The only exception
is that a baby born to a mother with Lupus may develop
neonatal Lupus.
MySpace
Question:
I have a question, I have lupus, SLE and
have had it for 24+ years, been on the prednisone, imuran, metho,
and this time the Dr choose something else for me I can't find
one instance of it being used to treat SLE, RA yes but not SLE,
the name of the drug is Enbrel, I get a shot it is 50mg, has
anyone else out there been treated for the lupus with this drug?
Please respond to me asap as I am due for another shot soon.
Thanks so much, God bless and remember all of you with lupus, we
can walk side by side with our wolves it is possible...
Answer:
You should definitely talk this over
with your doctor, I have never hear of this drug being used
to treat Lupus. Worse than that, if you Google Enbrel Lupus
you get a whole list of cases and articles about how Enbrel
causes Drug-Induced Lupus. Here is a link to an article by
Rueters Health.
Email
Question:
I have
been noticing a 'butterfly' rash after a hot shower. I am
showing some of the signs of lupus, but have not been tested.
For instant, I'm having a bad flare up with joint pain and I'm
showing more than 3+ protein in urine. This may be a very sill
question, but can hot water bring out a lupus rash? It last for
a few hours and then it's gone. Several years ago I tested
positive with the ANA test. But have not been tested for several
years. I also have extreme fatigue etc.
Answer:
I have
never read any research about heat bringing out the rash,
however I can tell you from personal experience that my
butterfly rash is always more noticeable after a hot
shower. For me at least I am not sure if it is the heat or
the exertion, or maybe a combo of both. Talking to your
doctor about Lupus is definitely a good idea. Here is a
link to more info on
Lupus Diagnosis.
Email
Question:
I have an
markedly enlarged spleen and liver. I am told repeatedly that
the spleen is not related to my lupus. I am very interested to
find out if it could be caused by something else that was caused
by the lupus.
Answer:
Thanks for your
question! There are several possible causes for an enlarged
spleen. Lupus can cause it directly or indirectly. An
enlarged spleen can be caused by viral or bacterial
infections. If you are on immunosuppressives for Lupus you
are more susceptible to infections. Also, it can be caused
by liver disease and Lupus can cause liver inflammation and
damage. Lastly, Splenomegaly can be caused by hemolytic
anemia which can be caused by Lupus. There are other causes
for this condition and it can sometimes be easy to "blame"
everything on Lupus. It is important to have a doctor who
considers all possible causes so that you do not miss
another condition.
Email
Question:
i had a
low postitv result and 48% thirod my G.P say she cant confirm or
say i don't have lupus. I have all other symptoms .my question
is ,'Is there any thing simaler to lupus which would give these
results?
Answer:
Yes
there are several things that have similar symptoms to
Lupus. Some of those diseases are Lyme Disease, Rheumatoid
Arthritis, Scleroderma, Fibromyalgia, and more. Diagnosis
of Lupus or these other diseases can take some time and
monitoring of symptoms as well as lab work. Here is a link
to more information on
Lupus Diagnosis.
MySpace
Question:
I was wondering if you can send me the code
for your pic above the one with the lupus ribbon and the
butterfly I am looking into a tattoo after my baby comes that
ties the two together and that is perfect!
Answer:
<a href=http://cure4lupus.org><img
src=http://cure4lupus.org/images/logo.gif></a>
Thanks for your support! I love the tattoo as well as the
graphic obviously :)
MySpace
Question:
I just wanted to know when you were
diagnosed with lupus I was when I was 9 years old and I still
have it I wish there was a cure because its driving me insane
and I cant help it I have to take a lot of meds but my mom
wanted to know when you were diagnosed with lupus? Well
thank you for adding me bye the way I just saw that you did but
get back to me when you can thanks bye!!!
Answer:
I actually wasn't diagnosed until 2004,
however I have had symptoms since age 13 (1991) and I have
known it was Lupus since 1996 but due to not having
consistent health insurance I didn't get the diagnosis until
2004. Best of Luck to you, you are certainly not alone in
the battle against this terrible disease! You can read more
about my personal story at:
Kendra's Story
Email
Question:
I am
currently on Long Term Disability from work. I just received a
call from my employer that they are filling my position. Now,
does my employer have any legal obligation to find me another
position when I am ready to return to work. I am wondering if I
should obtain a lawyer. I keep suffering from Lupus Pneomontis
and have been hospitalized seven times in a six month period! I
am also wondering if I would be a candidate for Social Security,
due to this being such a chronic issue for me?
Answer:
Yes, you should
consider applying for Social Security and as quickly as
possible as you don't get money prior to your application
date. Be prepared, sometimes it can be difficult to get for
Lupus but stay determined and you will eventually get your
due. As far as your employer, perhaps you can contact a
social worker with your county for advice.
Email
Question:
Can you
test positive for Lupus and get re-tested a year later and the
results be negative?
Answer:
There
is not a single test for Lupus. If you are referring to the
ANA test, Yes you can, and that does not mean you do not
have Lupus. ANA levels change over the course of disease.
Here is a link to more information on
Lupus Diagnosis.
Email
Question:
If you contain
lupas can hear like a little ringing noise in your ear??
Answer:
Yes, When
antibodies attack the inner ear it is called autoimmune
inner ear disease. This can cause dizziness, vertigo,
tinnitus (ringing in the ears), and progressive hearing
loss. Here is a link to more information:
AIED Information
Email
Question:
My grandmother has been living with Lupus
for more than thirty years. I wanted to know how I could get
involved in helping the LFA.
Answer:
The
best way to get involved with the LFA is to contact the
chapter nearest you. Here is a link to the LFA Chapter's
contact information:
LFA Chapters
Email
Question:
My doc has
decided to start weaning me off Plaquenil. I am now taking a
200mg dose every other day. It seems the days that I don't take
it I am extremely fatigued. My rheumatoid doc doesn't think that
not taking the Plaquenil isn't causing the fatigue but it sure
seems that way. Could it be?
Answer:
Thanks for your
question. The most likely, and most troublesome cause would
be the Lupus acting up due to no longer being on the
Plaquenil. Blood work to rule out a Lupus flare is probably
in order.
Email Question:
'My
grandmother was diagnosed with Lupus several years ago. Lately I
have experienced hair loss, persistent headaches, extreme
fatigue and painful aches in my joints. I am only 26 and a
mother of a two year old, could this be Lupus or is this just
normal. Any advice would be appreciated
Answer:
Thanks for your question. The symptoms you describe
certainly could be Lupus, however they could be several
other things. They are not however normal. Your
grandmother having Lupus does make you more likely than the
rest of the population to develop not only Lupus but any
autoimmune disease. Discussing these symptoms as well as
your family history with your doctor is certainly in order.
Email Question:
why do they treat lupus with rheumatology doctors?
Answer:
I don't know for absolute sure but I
think it is because joint pain is the most common symptom of
Lupus. It is also the first symptom noticed in the majority
of cases.
Email Question:
I was diagnosed last year with
Cutaneous Lupus. Can this turn into the other lupus that affects the
entire body? I have some of the symptoms, the rash on my arms,
extremely tired, depressed, no sex drive, achy feeling. I was
also on birth control for 8 years... I stopped taking them a
month ago thinking they may have caused some of the problems,
but I'm not sure. Please help!
Answer:
Thanks for your question. Cutaneous
Lupus doesn't "turn into" Systemic Lupus however some people
can have both. Also, some patients without Systemic Lupus
may manifest some of the symptoms. However, the symptoms
you describe can be many, many things. You should tell your
doctor about all of your symptoms as well as your concerns
about Systemic Disease.
Email Question:
'I have been
tentatively diagnosed with fibromyalgia. My rhuem. ordered test
to rule out Lupus. I have had pos. ANA, dsDNA, and positive for
inflammation. I have malar rash, but he tells me everything else
has came back normal. What significance do these test have, and
are the commonly positive in Fibro cases? Maybe he just careful
and slow about diagnosis?
Answer:
Thanks for
your question. It is common for people that don't have Lupus
to have a positive ANA, however the dsDNA test is far more
specific. A positive anti-dsDNA almost always means Lupus.
In order to make a diagnosis you must have four of the
ACR's 11 criteria.
You have described to me 3: malar rash, positive ANA and
positive anti dsDNA. I would be willing to bet you have
arthritis since you have been diagnosed with Fibro. I would
push my doctor for a Lupus diagnosis and/or find another
doctor in your situation.
Email Question:
Is The maylar
rash something that can go through periods of looking better and
worse or does its appearance stay consistant?
Answer:
Yes, it can
get better and worse and even disappear for long periods of
time. You can also have it and then stop getting it or not
have it and suddenly start getting it. Also, only about 50%
of Lupus patients have it at all.
Email Question:
Has anyone else
developed 'strabismus' (double vision) as a result of lupus? At
age 63 (2/07)I was diagnosed with Lupus after becoming extremely
ill within a very short period of time. The strabismus developed
during this time also. I will be having surgery in August of
this year to correct this eye condition and wondered if this was
common with other Lupus patients. Thank you.
Answer:
Thanks for
your question. I am not exactly sure what eye condition you
have. There are a couple of eye conditions that can be
caused by or are related to Lupus and/or the medications
used to treat it.
My best guess based on what you have said is that you have
Pseudotumor Cerebri, also known as Intracranial
Hypertension. This condition causes double vision and may
require surgery to correct. I happen to have this condition
as well. It can be caused by the Lupus itself or by the
medications used to treat Lupus. It is not classified as
common.
If this is not the condition you have, let me know and I
will be happy to answer any further questions. Best of luck!
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