Lupus: 22 Answers

Questions, experiences and reviews (22)

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Lupus.....?
My mom might have Lupus. She has the butterfly rash and she hasnt gotten a test back from the doctor but he really thinks she does. Is Lupus serious? I've heard it takes a very long time to take its full course. In many years does Lupus kill you?
my mom is in an RN
so she is very well informed about Lupus

awissa
05/26/07

Hi, Im Chris. I have Lupus and have had it probablly since I was in my early teens. I'm now almost 40. I also own a support group for people with autoimmune diseases. Well, Lupus can do and attack almost any organ. However, there are various degrees. The prognosis is much better today then even 10 years ago. It can come on quickly and diminish with time, or a person may have it hit slow, with periods of remmison. It does effect skin but there are two types of lupus SLE (which is systemic, meaning whole body) or Discoid (meaning just skin). I have had many "Flares", some very serious, and some mild ones. Part of living well with Lupus is a persons fight and attitude. There is no reason, with proper medical care that your mother can't lead a full life. There are more Family support and outside support are also paramount. As a person who lives with, as well as the researcher for the group I own, with other memebers, my knowledge base has grown. As well as a very good Rhuemotologist, that is important, and going to appoitments with a specilaist is paramount in catching any organ threatning, or even milder cases of lupus quickly. Several in our group still continue working, some not. So until you find out for sure, worry and stress will only make you and your mom feel worse. I also know from personal experience, when I don't eat fast food, I recover quicker, and have longer periods of remmison, as well as I just feel better. Along with blood work, a butterfly rash your mother must meet a minimum of 4 of 11 critera for a possible or probable diagnosis.
Thank You,
Chris B

christibro40
05/28/07

Is it possible to have lupus even though non of your family has lupus?
I have tested positive for lupus, and I have many lupus symptoms. My doctors believe I may have lupus, but I have not been officially diagnosed with lupus. All of my family members are very healthy. No one in my family has any illnesses. No one in my family has ever had any type of autoimmune disease. I am the first and only person. Is this possible and how could this be?

roxemarie
07/13/08

More often than not people who are diagnosed with Lupus do not have anyone in their family with Lupus. My wife is one example of this. Her family is very healthy yet she has severe organ involved SLE.

Researchers believe that both genetics and environmental factors cause Lupus. The important part now isn't to worry about where you got it from but rather to focus on how to keep yourself healthy. Make sure you get to know your doctors and have an open line of communication with them. Lupus is a very treatable disease but if it gets out of control it can be very difficult to recover from.

If you have any questions you can post them here, but I would definately go to the Lupus Foundation of America at Lupus.org and learn more about your disease.

mgnysgtcappo
07/14/08

Danger in taking Plaquenil and Prednisone if its not Lupus ?
My body is mimiking signs of Lupus

heart probs
high ANA
sunlight sensitivity

Dr is not sure its Lupus or not but wants me to start the above meds. My questions is : If its not Lupus at all; can these medications be harmful ?

Thanks

Rebecca C
05/12/08

There are definite criteria to make a diagnosis of lupus (Systemic Lupus Erythematosis or SLE). If your doctor is unsure of the diagnosis, then he should refer you to a Rheumatologist, or at least discuss the case with one. A Rheumatologist specializes in the diagnosis and treatment of arthritis and auto-immune disorders - like lupus. SLE is not a disease to be taken lightly and some variants of the disease can result in kidney failure, psychosis and seizures, and death!

Prednisone and Plaquenil, while not as dangerous as some other drugs, are nevertheless not to be taken lightly. Plaquenil requires regular eye examinations by an Ophthalmologist. The Plaquenil can build up in the retina and cause blindness!. Prednisone can cause a whole series of side-effects including reduced resistance to infections, osteoporosis, muscle weakness, fat accumulation, fragile skin, diabetes, cataracts, and shut down of your bodies adrenal glands. Then, you become dependent on it and the process of weaning you off and trying to get your adrenal gland back to working order can be a long and tedious process.

If your doctor is not a Rheumatologist, I personally would demand a referral to a Rheumatologist. I would want the best and most skilled physician to take care of me if I were developing SLE.

B H
05/12/08

What are the odds of a child getting Lupus if a parent has it?
My mother has Lupus, and I am worried about it. Can anyone tell me the odds or likelihood of a child of a Lupus patient having the disease? I've been to several sites but didn't find an answer to this ?

Jenintn
09/06/07

There is no known gene or genes which are thought to cause the illness. There are recent discoveries of a gene on chromosome 1 which is associated with lupus in certain families. Previously, genes on chromosome 6 called "immune response genes" were also associated with the disease. Only 10 percent of lupus patients will have a close relative (parent or sibling) who already has or may develop lupus. Statistics show that only about five percent of the children born to individuals with lupus will develop the illness.
This site will give you good info-
http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutintroduction.aspx?articleid=311&zoneid=9
You may ask questions there too.
Good luck!

aWellWisher
09/06/07

Can Lupus be diagnosed on clinical symptoms alone or is the blood work required?
I have 9 of the 11 indicators of Lupus. My blood work will not show Lupus.

§♫♪‹(•¿•)›☼»-(¯`v´¯)-»\\
10/17/10

According to my reference, you need to have criteria to confirm the diagnosis, but they do not have to serology indicators.
There are some lupus that have negative markers but positive for SSA and SSB (aka anti ro and anti la). These are markers for Sjogren's syndrome; however if they are positive with negative ANA, then you have lupus.

disclaimer: for discussion only please consult your physician

Toray
10/17/10

Can lupus be sexually transmitted, also if I have sex with a girl with lupus, what can happen to her?
Can lupus be sexually transmitted, also if I have sex with a girl with lupus, what can happen to her? In terms of complications, or would that depend on what type she has?

Jege
10/02/07

Lupus is not a contagious disease. It is a disease that can affect any major organ (i.e. lungs, heart) If your girlfriend has lupus should would be advised by her doctor on what to do. My brother has had lupus for years. In remission now.

s
10/02/07

When does Plaquenil (for Lupus) kick in?
I was diagnosed with Lupus a little over a month ago. I started taking Plaquenil a month ago (in April) and I don't feel any different. I still have joint pain in my legs and knees. I still have the butterfly rash on my face and I still have "Lupus" hair. Anybody have experiences with this medication? When does my hair stop falling out?????

Sansy
05/21/10

I started noticing a difference about 3 months after starting it. I have had no side effects and to me its worked great. I only take one 200 tablet a day. My hair never fell out because of my lupus though, Im sorry you are going through this. Good luck!

Army ♥ Wife
05/24/10

What is the difference between Lupus affecting the nervous system and MS?
What symptoms are different for each? How are they different and how are they the same? How common is it to have Lupus (SLE) and a neurological disorder such as MS?

MaluLanix0x
06/21/09

Both lupus and multiple sclerosis are autoimmune disease in which the immune system goes haywire and attacks healthy parts of the self.

In multiple sclerosis, the immune system destroys the myelin sheath or fatty covering of the nerves. This can result in loss of transmission of signals.

In lupus, neurological symptoms can include things like seizures and neuropathy, or nerve pain. The mechanism by which lupus causes these things is not the same as in MS.

Linda R
06/22/09

What are the chances of a person undergoing chemotherapy for lupus getting a girl pregnant?
I'm aware that the lupus chemodrug Cyclophosphamide is known for killing your sperm count and ruining sperm motility, at least temporarily.

How good are your chances of concieving a child? If they're pretty low... anyone have an idea how long it takes to recover your counts?

I spoke with my doctor about this, but he says that since Lupus is a disease that affects far more women than men, it's hard for him to say with any assurance.

r0s3tta_st0n3d
04/28/09

there are other therapies which will help more with this problem and the only reason you are being recommended that route is because of profit
look into what edgar cayce said on lupus
spiritual healing and reiki can help too
not to mention
bob beck protocol
raymond rife machine may help too
google search them all

phillip b
04/28/09

i have lupus i take piroxicam for pain its not helping anyone know of something that will help?
i have sle any other information on lupus will help

ali
01/26/10

Treating the pain is not the only thing your doctors should be doing with lupus. You need to treat the illness. I have lupus and was never even given the option of pain meds, even though I sometimes felt that my body was just going to break.

Even though doctors still know very little about lupus, they do have different treatments, and in most cases you can find one or a cocktail of medications that will work for you.

Prednisone is good for flareups, but it's not good to be on long term. There are good odds that it will clear up most of your symptoms temporally. (Never failed for me)

The next step up is the anti-malarial (plaquinil). In more mild cases of Lupus it can manage symptoms and keep flareups at bay.

Then we get into the more toxic drugs like methotrexate which is basically mild chemoterapy.

Then there are even more toxic ones to help....but the toxicity of it is less harmful to your body than letting your immune system attack it away.

Basically, you have to treat it, not just the pain.

Laney
01/29/10

LUPUS...............?
I'm a 17year old african american female, I'm a hypochondriac. No one in my family has lupus, ever since I heard snoop doggs daughter had lupus I've been stressing out thinking I have it to, I have never had fatigue, joint pain, rash, or any of the other symptoms, but as soon as I looked up the symptoms my legs had a dull ache in them, its rarely been my joints and it dosent hurt really bad, I never got this dull ache until I started stressing and now I get this dull aches on my arms and stuff, I've been stressing my man out with this because I'm scared 2 get it. What kind of pain do ppl with lupus have? Is it a dull and mild pain or bad? Please answer all my questions
most of the time its a dull ache on my left thigh

LoveMe!
07/23/10

Hi.....Well I consider myself a pro when it comes to SLE or LUPUS... I have lupus and have had lupus since 1987.So,I am very aware of it's symptoms...This can be a very tricky disease,and almost everyone who has this disease has his/her own symptoms,they vary with each person who has lupus.I have every symptom you can think of,except any renal involvment,I have had some mild heart involvment,but that's about all for renal involvement.I had NO idea that Snoop's daughter has SLE!! It's the worst form of lupus a person can have and dear? If your ONLY experiencing a mild left thigh pain? Then trust me? You do NOT have lupus!!!! I wish that was my ONLY symptom....I would be a very lucky woman if it were...I just came from my lupus doctor(that's what I call her),and my 'double stranded dna' was very worrying to her,I am concerned for myself right now.I am taking Plaquenil,Imuran,and just had an injection in my thumb joint due to jaccoud's arthropthy,which is rare with SLE patients,but it happens with long disease....anyways...trust me? You are FINE!!! And you are lupus FREE!!! Just to make sure ask your doctor to run and blood test for lupus he/she will know what kind to preform....this will make you feel at ease,ok? I don't think anyone's word's will make you feel any better except you doctor's...i wish you all the best of good health....:)

Jennifer
07/23/10

Is there anyone taking CellCept? If so, how long did you take it and what symptoms did you have?
SERIOUS REPLIES ONLY. THANKS!

Hi, I was diagnosed with lupus almost 2 years ago after over 11 years of dealing with various symptoms and flares and kidney disease. Right now I am only taking 1/2 a 250 mg chloroquine tablet once a day but I still have pain and fatigue and my sed rate is going up slowly, which it does during seasonal changes. My doctor wants me to start chemo or steroids, which scares the crap out of me. I saw online that there is something called CellCept that may work to reduce lupus symptoms that may have more tolerable symptoms than chemo, but I don't want to jump into anything. Can someone who has lupus who has or is using CellCept tell me if it works, how long it works, if you experienced any really bad side effects and if so did you recover? And did the lupus come back? Thank you for your help.

shayeshayeshaye
11/07/06

My wife has been taking cellcept for her Lupus for the last two and a half years with little side effects. She was a little sick to her stomach at first but now it really doesn't affect her. It has done wonders for her Lupus flare ups though. She hasn't had kidney involvement since being on the drug and she is only taking 5 mg of prednisone right now. She also has antiocardiolipid syndrome and takes coumadin to thin her blood. If you have any more questions or would like some more detailed info please feel free to email me

mgnysgtcappo
11/12/06

lupus?.......................!!!!?????
Can lupus be the cause of vetrious hemorrhage?...

poor as a rat
06/25/09

Thrombocytopenic anemia (low platelets) is common in lupus. Platelets are needed in order for blood to clot. So, the answer is yes.

Linda R
06/28/09

I have Lupus and was wondering if anyone had any suggestions on helping dry skin?
I have been living with Lupus for about a year now and have episodes where my face gets very dry, flaky and sometimes itchy (butterfly rash). The skin around my eyes and my eyelids get very dry. The skin turns a deep shade red/purple and sometimes is painful to the touch. I also get dry patches on my forehead and chin. Does anyone have non prescription remedies to make my episodes subside easier?

angeldevoid71
06/26/08

This is something that you really must talk with
your doctor about. Its important that he or she
know this. It may be a side effect of medication
you are now taking. And furthermore, before you self
medicate, you need to find out it it will interact in a
negative way with your current medications.

Karl
06/26/08

Why is my doctor making me get a pregnancy test before putting me on Plaquenil?
I've been undergoing numerous test in the past months after two biopsies came back positive for a connective tissue disorder, suggestive of lupus. I recently went to a new doctor who believes i have Lupus-like syndrome. I'm only 18 and i told my doctor i am in no way pregnant, why is she still making me have a pregnancy test?

satter127
04/24/07

Preliminary reports suggest that azathioprine (Imuran) and hydroxychloroquine (Plaquenil) do not harm babies, but the final word is not yet in on these. Your physician is REQUIRED to have lab tests completed before beginning a med like this. It's nothing personal, it's just a way for your doc to ensure you are safe.

Skyetai
04/24/07

What does a high sedementation rate mean to someone with SLE Lupus and Sjogren's Syndrome?
I have both Lupus (SLE) and
Sjogren's Syndrome (for 15 years). Recently, in a blood test, my Sed Rate was 40, and this really upset my GP. She has referred me to see my Rheumatologist ASAP. What can this mean besides "inflammation"?

I am also anemic and have been since August. I'm on double iron and folic acid and still continue to be anemic. My hematologist just did a bone marrow test and I don't have the results yet. This past 5 months have been very bad and I'm afraid I have something new. Can anyone help?

Bonnie Lee
02/19/06

It means your diseases are active and the SED rate is a marker to show inflammation in the body. SED rates are also elevated in people with active arthritis. Inflammation of the joints, and would be elevated during an infection. Your immune system is hyperactive with your type of diseases, and your SED rate is an indicator of your disease. The Rheumatologist is expert in this area of helping the active phase of your disease to subside.

eowen46
02/19/06

I want to ask from mgnysgtcappo lupus question.?
my wife is also on cellcept since 8 months, but and having no heart problems, but suffering lupus nephritis, and creatnine is 3.2, and having pain in kidneys, just to know that for how long did wife used immunosuppressive cellcept/myfortic. and that is she get well because of Rituxan, if yes how much she has taken per day and for how long.
Rituxan= /day/ months/years?
cellcept 500mg= /day/months/years?

is she on prednisolone now, how much she is taking?
your information will help my wife treatment

Regards.

Falcon
07/04/08

You arent going to like this answer but it changed my life. Read a book called You Are WHat You Eat by Gillian Mc Keith so your wife can one day be healthy again. It really does work if you follow her 11 week plan. Its not about losing weight its about being healthy.

Stephanie
07/06/08

Can Lupus be caused by medication?
My daughter (9 years old) was diagnosed with Absence seizures a few months ago. She was having several hundred a day, so she was placed on Zarontin for them. A few months later she developed a rash that would go away then come back in another place. We stopped the medication to see if it was from the med. It didn't fade, so we were told she was allergic to something else, and we continued with the med. A couple of weeks ago, she was at her fathers house (joint custody-he gets the summer), and her fingers and toes turned blue, then purple. After testing, the doctor there (Texas) told me she has Lupus, but it could be a result of the Zarontin, so he took her off of that and prescribed Depakote.He said he'll test her again to see if it's gone in two weeks. Anyone experience this before? Can anyone tell me something to advise me what to do in the mean time? Any input at all would be greatly appreciated!

!SONY!
07/20/08

There are four types of lupus: cutaneous or discoid, systemic, neonatal, and drug induced. Yes, some medications can cause lupus. In those cases, the lupus goes away some time after the offending drug is withdrawn.

The fingers and toes issue is probably Raynaud's syndrome which often accompanies lupus. I have both.

If this was my child, I would take her to a pediatric rheumatologist. Lupus is a complicated condition. It can affect the central and peripheral nervous systems.

Get copies of all tests and notes that the doctors make and start a file. It will be up to you to make sure all of your daughter's doctors are on the same page.

Each time I see one of my doctors, I fax all results to the others. Bring a list of questions with you to her appointments. Put them in priority order. Take notes. Make sure you understand what the doctors are saying by repeating it back in your own words.

You have my prayers.

Linda R
07/21/08

does topicort lp cream work discoid lupus?

06/16/10

It rather depends on your condition. As someone who suffers from constant skin lesions from SLE, I can tell you that you'll go through a whole slew of creams, before finding one that actually works. What works for one person, doesn't necessarily work for another. And, you won't really know, until you try it for a period of time.

For me, topicort was one of the first cream's I've ever used and it didn't work. I'm on ointment #6 - clobetasol. Though, it looks like it work's better on my sister's bf's eczema than it does my rash. When my rash really flare up, I fall back on the steriods shot option.

Good luck!

rianne
06/17/10

For my Lupus I take Plaquenil. My hair is thinning and it freaks me out.Is it safe to use it with Provillus?

cccc
07/10/09

Hi

In rare cases a side-effect of antimalarials is hairloss and hair depigmentation. Difficult to say whether lupus or the drugs are the cause, more likely to be lupus as it can cause hair loss.

As far as I could tell provillus is a mineral/vitamin supplement? If so it should be ok to use with plaquenil, but you may be well advised to check with your lupus specialist as we always recommend doing that before taking any supplements with medical drugs.

Hope that helps a bit.

Angie
07/10/09

Are these test results saying lupus?
I have spent nearly 2 years trying to find out what is wrong with me. What started as painful intercourse advanced to AUB (endometriosis was removed). After treating my endometriosis I found that my pain was isolated to my bladder (I no longer received bladder urges though no incontinence issues). No signs of IC. Then I lost control of the bladder, then bowels, then legs. My symptoms varied from pain feeling like my legs were lit on fire to my bone marrow splitting apart to numbness in the legs. I also had issues with hands and feet turning blue, chest pain, inexplicable fevers, increased bruising, and an inability to fight off infections. My muscles in the legs have atropied despite my work being very exercise intensive (with restraining animals in excess of 200lbs).

MRI's of the spine were clean excluding one area of decreased nerve signal (a neurosurgeon thought it might be a cyst but the myelogram was clean). No signs of MS plaques and evoked potentials were normal. Lymes disease testing was negative.

So on to the positives. My ANA was positive homogeneous pattern 1/320 titer. CK was 311 IU/L. But my sed rate was 7 and SS-A IgG and SS-B IgG Autoantibodies were negative. WBC was 5.6 and lymphocytes were slightly elevated and granulocytes were slightly decreased. All other cbc results were normal.

I know that my blood results do not scream lupus but at this point I am wondering if I should be consulting a rheumatologist. My neurologist doesn't want to make a call of lupus, she would like me to consult with my PCP (he is 2 hours from my home so I would prefer to see a local specialist to make the call if it is indicative of lupus). My CSF has been sent to the Mayo Clinic for testing and I should hear back in 2 weeks or so. In the interim I am curious if I am right in considering these test results suspicious of lupus considering my symptoms.

Any input would be appreciated
Another think that has started recently is seizures (nothing beyond petit mahl yet thank goodness). I also had a horribly inflamed gallbladder that was adhered to my stomach and duodenum and intrahepatic which had to be removed a few months ago (I'm unsure of any correlation between that and my current problems).

Oh and in response to my first answer...there is no cure for lupus only ways to manage the autoimmune response. But I am already using aloe juice when I miss my Carafate for Nsaid induced ulcers and duodenitis. No help from that juice for anything other than the stomach pain.

Sherri T
11/08/08

what are the symptoms after finishing the medrol dose pack for lupus?
Are you suppose to ache or feel dizzy or nauseas?

mother of two
07/24/10

These may be due to medrol. But you must report these symptoms to the treating doctor.
For side effects of medrol-
http://www.rxlist.com/medrol-drug.htm
Most of them are after oral intake.

aWellWisher
07/24/10

	fart: My spirit animal is a wolf with #lupus
	SocialMediaShan: @SpoonieVille Have you tried Lyrica before? And I assume you're on other Tx for Lupus, Diabetes?
	rudysmashlocks: RT @fart: My spirit animal is a wolf with #lupus
	david_heinz: @feliciaday my dad has lupus and I greatly appreciate what you're doing. very cool Felicia
	RaisingASDKids: For years convinced my plaquenil was causing weightgain. Dr kept saying no. Found #lupus forums that everyone says u bet it does.
	negativezombie: RT @feliciaday: Wow guys, in less than an hour I met my 2k goal for the Lupus walk. Thank you so much, what an amazing thing for you to do! :-)