Pseudo means false. Applying logic, the name means a false brain tumor. It is mainly caused in the skull due to poor absorption or the buildup of cerebrospinal fluid. Women between the age-group of 20 and 50 suffer from this disease. There are numerous symptoms to this disorder. The major symptoms and signs are listed below:

Ringing in the ears that is in co-ordination with one’s heartbeat
Blurred or dimmed vision
Moderate to severe headache that originate behind the patient’s eyes. This condition is aggravated with eye treatment
Small episodes of blindness
Nausea, dizziness and vomiting
Double vision which is also known as diplopia
Difficulty in side vision
Neck, shoulder or back pain
Seeing light flashes which is also known as photopsia

The usual causes of pseudotumor cerebri are still shrouded in mystery, but it is suspected to be linked with excess of cerebrospinal fluid which is present in your skull. The spinal cord and the spinal cord is surrounded by this fluid, it acts like a cushion to protect important tissues from harm. The fluid is usually produced in the brain but is absorbed in the bloodstream. The possibility of the pseudotumor cerebri may be due to an increased intracranial pressure and this may be responsible for the absorption process that takes place. This happens when there is an increase in intracranial pressure, which may happen when the contents of the skull extends their capacity.

The following factors listed below have been associated with this disease:

Medication- Oral contraceptives, growth hormones, discontinuation with steroids, tetracycline and an excess intake of Vitamin A
Obesity- It occurs mostly in 1 in 100,000 people. Women who are under the age of 44 and are obese are more likely to suffer from this disorder.
Health problem- The diseases which are mostly linked to pseudotumor cerebri are Head Injury, Kidney disease, Lupus, Addison’s disease, Mononucleosis, Lyme disease, Polycystic ovary syndrome, underactive parathyroid glands, sleep apnea and so on.

There are a number of tests that are carried out to diagnose this fake tumor. Some of these exams are listed as below:

1)Eye Exam- If the doctor suspects pseudotumor cerebri, he will look for a distinctive kind of swelling, which is known as papilledema in the rear of the eye. The patient may need to undergo various eye tests to see if there are any blind spots in her vision.
2)Spinal tap (lumbar puncture)- A lumbar puncture-which involves placing a needle between two vertebrae in the lower back which helps to decide how high the pressure is inside the skull.
3)Brain imaging- MRI or CT scans can rule out other problems that can cause similar symptoms such as blood clots and brain tumors.

There are treatments for this disorder too. The medications start with trying to control the symptoms. Weight loss is recommended for obese individuals. If th eye-sight gets worse, there are surgeries to reduce the pressure around the optic nerve.


75 thoughts on “What Is Pseudotumor Cerebri?

  1. Chris

    “Lupus-like” symptoms with a negative ANA?
    Over these past five weeks, I have been experiencing migratory joint and muscle pain in my knees, arms, back, hips, stomach muscles, shoulder, neck, wrists and fingers. No inflammation. The joints seem to crack a lot. No fever, fatigue, rash, etc. I’ve tested negative for everything, including an ANA. The things is, there are only so many things that my symptoms qualify for but, just before these symptoms, I was quite stressed over my job. My doctor thinks it is a viral infection, that typically clears itself up after six to eight weeks. I’ve discounted so many other disorders (from symptoms and tests) but am still wary of lupus. I know that ANA results can fluctuate and that it’s possible for an ANA-positive person to test negative, from time to time, but I am wondering what the odds are of testing negative during (what would be considered) a “flare”. My doctor says I should move on from my fear of lupus, as a result of my tests, age, race, and gender. I am a twenty-one year old caucasian male (from Canada) with no family history and, from what statistics I’ve gathered, there are only about 1,000 or so adult white males, with SLE, in this country and that an estimated eighty percent of them experienced onset over the age of forty. Also, only half of SLE patients claim muscle/joint pain as an initial symptom. Combine this with my test results and you’d think I would be breathing a sigh of relief. No such luck. Am I worrying over nothing?

    1. Angela

      Your Dr. is partially right most of the time Lupus affects women, but men do become afflicted with Lupus. Where I’d have to disagree with your Dr. is that it usually takes many ANA test over several years and lots of grief and many negative test before Lupus is diagnosed. It took Dr.s 8yrs before they finally diagnosed my mom with Lupus, and after years of worrying what was wrong with her and why the Dr.’s couldn’t figure it out…It was almost a relief for her to know she was not crazy or a hypochondriac!
      FYI
      I suffer from Rheumatoid arthritis since I was 12yrs old and I too have joint pain…. Acupuncture has been the key to me living pain free.

  2. neha 1

    Would anyone like to share their experiences about Lupus as it can affect any of us?
    Lupus or SLE is an autoimmune disease which affect millions of people around the globe. People have got different approaches when the symptoms flare up. It brings fatigue, pain, rashes or discomfort. Would be good to hear from sufferers

    1. Jim D

      Not only can Lupus cause the more common symptoms mentioned, but it also causes the body to turn on itself. When my wife was diagnosed with Lupus at 23 yrs old, it attacked her kidneys and turned 70% of them to scar tissue. Prednisone was used to treat it and that caused AVN, osteoperosis, osteoarthritis and a whole bunch of other stuff.

      Now, at the age of 34, my wife has recently spent 2 weeks in ICU after the Lupus attacked her brain and sent her entire body chemistry out of whack. This condition is referred to as Lupus Cerebritis, or CNS Vasculitis. In her case, due to all of the complications connected to it, is was nearly fatal for her.

      As doctors know little about it, when compared to other more common conditions, it makes Lupus more difficult to diagnose and treat. There is still much research and experimentation ongoing relating to Lupus.

      Just my 2 cents for you…

  3. Dance-a-Holic

    I need help editing my research paper. I’m really bad at papers…..please help!?
    Well, its on lupus. I have the intro and two body paragraphs, and I still need to do the conclusion. So, I was wondering what I should change on my paper, and what I need to add..? I also have to do a powerpoint based on the paper, that should last a minimum of 5 minutes up to 15.

    The reason why I chose this topic was because my dad has lupus, and I wanted to know more about the topic. He was diagnosed with lupus when he was about fourteen years old. He still receives treatment for it by going in for blood tests and taking medication He has the most common form of lupus, Systemic Lupus Erythematosus (SLE), in which causes the antibodies to react against his own normal tissue. He has arthritis and joint problems, but nothings wrong with his internal organs. To support my dad and other lupus survivors, my family and I all go to the lupus walk in honor of remembering the people who had lupus that died. The things the audience can expect to read in this paper are the different types of lupus, the symptoms, the treatment and cures.
    Lupus is the result of an unbalanced immune system that can be destructive to any organ in the body. It can be categorized into three groups: discoid lupus Erythematosus, systemic lupus Erythematosus, and drug-induced systemic lupus Erythematosus. DLE is always limited to the skin and is identified by a rash that may appear on the face, neck, and scalp. It can evolve into the systemic form, which can affect any organ or system of the body. Systemic lupus Erythematosus is more severe than discoid lupus and can affect almost any organ or organ system of the body. No two people with SLE will have identical symptoms. Drug-induced systemic Lupus Erythematosus occurs after the use of certain prescribed drugs. It is more common in men, because the drugs are given to them more often.
    Lupus is hard to diagnose because it has a wide range of symptoms involving various parts of the body; and symptoms differ from each person. Most people develop painful joints and a rash, but lupus may also cause fatigue, depressions, and kidney problems. The treatment of lupus varies from person to person because each person has different symptoms. Most people with SLE require a regular blood test to check for lupus flares. Medication is the primary medical treatment for lupus. Presently, there are no other methods available to treat lupus because there is nothing else that can have the necessary impact on the immune system. Currently, there is no cure for lupus, but with early diagnosis and proper medical treatment it can significantly help control the disease.

    thanks. it would be much appreciated!!!!

  4. Mort de rire

    Heeeeelppp! Tons of swollen lymph nodes and other symptoms?
    I’m 15 and I’ve had a swollen lymph node in my armpit since January, and it hasn’t gone away. It’s tender, and I have a bunch more on my neck. About 6 or 7. They’ve been around for a long time. Also I have other symptoms like frequent headaches, tiredness, my friends comment about me looking pale, I’ve had a hoarse voice for a couple months, I have finger and wrist pains on my left hands, (YES finger pains) and lately I’ve been really depressed for no apparent reason. My mom says it could be SLE (lupus) or just something chronic because I had a bad throat infection in April that has impaired me to scream. So what are your suggestions on what it could be? Any advice on what to do about it? Please help!

  5. Kehaulani from Hawaii

    I’ve just been told that I might have SLE or Lupus in the early stages what should I do?
    I’ve seen a rheumatologist and he said that I’m ANA positive undiagnosed. How can that be? My PCP said that I have all the symptoms of SLE or Lupus. I don’t want to be left in the dark and then get hit hard later. I really need to know for sure so I can start making the right life changes. Should I get a second oppion from another Rheumatologist?

    1. doctorwhobfs

      I would go to get a second opinion if possible, as lupus does not have a clear positive or negative one test. But then, if this comes back positive start aggressive treatment early. In the 1950s the 5 year survival rate (out of 100 diagnosed people, the number of people still alive due to lupus) was only 50. Now it is around 94-96 out of 100). This is due not only to better treatments, earlier diagnosis, but also more aggressive diagnosis. You need to be proactive, and take charge of your health. I know in my case I’ve avoided a lot of future health issues by doing so. Good luck!

  6. shantae334

    Lupus and Military….Help Please?
    Here is the deal…back in 07 I went through a med board for what was assumed to be a cold weather injury. That proceeding took a year and in 08, after asking to stay in, I was found fit for duty. Mean while, for the longest, whenever I did blood work, my count would not be right but all my doctors couldn’t pinpoint it. After getting my findings, I then pcs’d where the blood count situation continued. I was even told that my cold weather injury could indeed be Raynaulds (a symptom of lupus). Still now tests were done. Was told this from 07 up until now. I was even referred to an off post rheumatologist but he never did blood work. I ended up pcs’ing again to present duty station. My face started breaking out and it was assumed that it was an allergic reaction to mosquitoes because beginning in 08, whenever i get bit, i would swell up really bad and have to take prednisone. Around June it was figured out that that wasn’t it and I mentioned to my pcm about seeing rheumy at past duty station and a referral was made. Rheumy did blood work and test finally showed that I have Lupus (SLE). Finally I now have the explanation as to why every year and it never fails, I get sick suddenly and a week later just as fast as it started, it goes away and no one knew why. So against the judgment of my pcm, rheumy and the dermatologist I have been seeing, I have been recommended for med board because apparently people with lupus cant be in the sun. I have been fighting this for the longest, seeing that mine is under control. After so much fighting, I’m wondering if it is even worth it now. Reenlisting will be even harder as it was after my first med board. My question is, does anyone have any experience with getting med boarded for having lupus such as disability ratings? I really dont want to get out but the benefits would really help out, especially with me being a single parent in the long run vs me ets’ing. Thanks for any help.

    1. BoatsBM1

      Since a very important point is somewhat hidden in the other answer, I will restate it;

      Make DAMN SURE you have copies of EVERYTHING in your medical record related to your condition(s) and treatment, as the VA will need those records and trying to track them down later can be a PITA.

  7. DearAmyDizzy

    Information/Advice on Lupus?
    I am 18, and I was just diagnosed with SLE Lupus. I’m going to see a Rhuemotologist in about a month but I was wondering if anyone could give me some info. I have been researching it but it’s kind of confusing and I was wondering if anyone had any experience with living with Lupus or someone you know has it.

    My family doctor sent me to an internal medicine doctor because I had been experiencing severe chest and joint pains and couldn’t figure out why I was always tired and feeling these pains. And after the second doctor did nuclear tests and ct-scans and tons of blood work and other tests, combined with my other symptoms he diagnosed me with lupus.

    I just am not sure what this means for me, like how much my life is going to change and what I should do.

    Thank You for Any Help! 🙂

    1. Winnie

      Hi Amy,

      Me too, was diagnosed when I was 18 years old with joint pains and blood clot. Now I’m 41.

      Life is going to change no matter we like it or not, therefore we just go through life with perseverance and remember to stay happy…it’s vital in order to stay healthy. No matter what, keep in mind to stay emotionally positive, this is what I’ve found to be very important and beneficial to our health especially in fighting “lupus” which can be trigger by stress or emotions. Secondly, is “exercise”, this is essential for the physical well being after we’ve taken care of the emotional aspect.

      Certainly, when the mind and body is in the right conditions, then we will be able to put off some drugs with long term and irreversible side effects.

      There sure will be ups and downs in life even though with people without any illness.
      Live life to the fullest and just go through the ups and downs without being affected negatively by it.

      We, lupus patients still can do a lot things and lead a normal life, just be patience and be knowledgeable on the disease, it helps.

      That’s my experiences I wish to share with you, may you recover soon and be well and happy. 🙂

  8. [[JustThatGirl♥]]

    SLE [[lupus]] and the sunlightt….?
    i have SLE [[the internal form of lupus]] and i was wondering, because i hear alot of people say i can’t go out in the sun…
    but my doctor said as long as i use sunscreen i should be fine, since mine isnt the dermatology [[spelling?]] kind…
    soo i just wanted to know if anyone on here knows someone or actually has SLE and if they go out and the sun, does it make their symptoms worse?
    thankyou soo much!

  9. Jayne

    Are these the symptoms of mild or severe Lupus?
    it doesn’t all attack me at once, but they vary from time to time. I always feel these symptoms can be attributed to something else…
    I have already been diagnosed with SLE but I havent gone to my rheumatologist for 1/2 year now. I am also not taking any meds at this time. I dont have any rashes so I was wondering if I should just rest and take it easy, after all, the doc will probably prescribe prednisone and send me home.

    memory loss —–I am just plain forgetful and always have been though
    headaches———don’t everyone get them from time to time?
    fatigue—————I am in college, so stress?
    dizziness/lightheaded————-i guess can be from stress, lack of sleep?
    vertigo (nausea)———————-happens sometimes
    eye infections—————————- (eyelids swollen, but i think it was caused by dirty fingers) happened 4 times in 5 months
    mouth sores/ulcers—————-happening just now
    hair loss—————————I have thin hair, since HS
    loss of appetite—————–on and off, could be due to relationships+ school
    memory loss—–sometimes i want something and go to another room to get it, and then come back empty handed. but it will take me a while to realize i forgot something.

    1. ParzLou

      Hi Jayne.
      As you have already been diagnosed with SLE I am sure you know that your rheumatologist can best answer this …. however of the many issues you describe I can tell you that the hair loss and fatigue are common signs for lupus . The rest of your ailments could have any of a plethora of causes not necessarily attributed to your lupus itself but could be an underlying factor . I would schedule an appointment with your rheumatologist for a better idea of what may or may not be causing your ailments and what there relevance to your lupus could be…

      take care

  10. MaluLanix0x

    How common are these symptoms in the earlier stages of Lupus (SLE)?
    * Frequent and or blocked urination
    * Muscle spasms & weakness
    * Muscle tingling/pins & needles
    * Carpal Tunnel Syndrome
    * Loss of coordination & sensation (starting with feet and then hands)
    * Numbness/tingling in neck
    * Shakiness
    * Loss/less of sweating in hands & feet
    * Eye floaters/eye flashers & pressure and blurry spots/dimness in eyes
    *Headaches w/ some mood changes & trouble focusing

    I am 17 and a half y/o, and almost positive that I have SLE. I was just diagnosed with Raynauds. I get symmetrical joint pains & have the malar rash. My eyes and mouth get dry frequently. My grandfather had type 1 diabetes, and my aunt (on the other side of the family) has sclederma and hypothyroidsm.

    * Out of those list of symptoms the first were the eye changes and carpal tunnel w/ numbness in hands/feet. This seems to be progessing & i am verry VERY frightened. (i am going to the eye doctor tomorrow & am seeing a neurologist VERY soon.)

  11. ali

    why are these dr’s treating me like i dont have lupus?
    i have had sle lupus for 8years a dr in missouri said i was borderline and 5 years later in ok a dr said the same than i started seeing a ra dr and they treat me like i dont and barely treat me for lupus and i have all the symptoms and its getting worse!
    i have super sun sensitivity fatigue fever mouth sores joint pain headaches numbness tingling in my legs butterfly rash on plaqunil and lortabs only cause i demanded them what should i do

  12. marpad2004

    I have lupus. Is lupus heriditery, and should i have my children checked?
    I’ve been diagnosed with SLE lupus since february of 2003. Prior my diagnosis. I was told all my symptoms were in my head and was told i was a nut case. I also have endometriosis. I have a daughter who is starting now the same path with her health as I have with mine. I concerned she my have lupus. I would like to know what her chances are, if any, if she test positive.

    1. Dr. Ima G. Neus

      My sister is a carrier but does not exhibit any of the symptoms. She found out when she went through in-vitro pregnancy. She had to have the boys tested after they were born.

  13. Karen D

    have been diagnosed with SLE (Lupus),.I have severe pain throughout my body,is this normal.?
    Lupus is attacking my Lungs & Liver and I have also had a few blood clots recently. I have severe joint pains and feel generally very unwell.My doctor has now increased my steriods and I am also on Warfrain to keep my blood thin. Are these normal symptoms.

    1. jeannes85

      Hi, i’m sorry to say that it is quite normal. I have Lupus SLE, and was diagnosed just a year ago. When it was active, I was in pain in my hips, hands, and feet. Sometimes it was hard for me to walk normally (without waddling). Right now my lupus is in remission so I feel fine. At my worst time, the lupus was attacking my heart and lungs. I want you to know that although these symptoms are normal, once your lupus stabilizes or goes into remission, you will be fine. Just keep a positive outlook on life, eat healthy, exericise, and taking calcium + D supplements. Good luck!

  14. mrs.sexyone

    what is lupus?
    Defining Lupus

    A chronic, inflammatory, connective tissue disease that can affect the joints and many organs, including the skin, heart, lungs, kidneys, and nervous system. It can cause many different symptoms; however, not everyone with lupus has all of the symptoms. Also called systemic lupus erythematosus (SLE

    1. christibro40

      I think you answered your own question. I have Lupus and have had it for a long time. The only thing you didnt put is that it is an autoimmune disease where our own cells attack each other because they become hyperactive, and do not know they are attacking their own healthy cells. So Dr’s use immunosuppresents, chemotherapy, and prednisone, to suppress the immune system, in hopes of quieting a flare or pushing it down into remmison,

  15. sondra w

    hello i have sle(lupus)for 5 yrs now, do my sypmtoms mean my lupus is active?
    I am the typical story, I suffered for one year with doctors disbelief that something was wrong even after the rash broke out covering almost my entire body, it wasnt until I ended up in the ER for two weeks when I finally got the definete answers to my elements. I have SLE,discoud lupus, now lupus nepritis and so on. Now my first indication that something was wrong with me was joint pain(i thought carpool tunnel), but the pain eventually spread everywhere and then the fatigue, and then swollen joints and raynuads syndrome,so of course then fibromayglia. When I left the hospital I wasn’t as fatigued but the pain never went away nor the joint swelling, just a differnet joint everyday,so for five yrs I’v been on oxycotin and percocet to live a more pain managed life, but sometimes my symptoms get even worse( how could they?) they do basically my joint pain becomes every joint, the pain medicnes stop working, I cant walk without a walker or I walk very slow and painfully, so I tell my doctor as always andwe run more labs, platlets at 60K,but not low enough for her to be concerned shes waitin for mor test results, she says that although I have these sypmtoms including a lovely rash, that my lupus may not be active. Please anyone is this BS or what? Can you have what is obviously a flare and it not be your lupus causing it? right now i am on imuran and plaqnil and i was on predinose for 4 years straight and finally said no more because it wasnt controlling these elments, she wants to but me back on it to bring my platlets up, but i know once i go off they go down again, I have been on every medicatio for sle and none have changed anything, I have had rituxan injects no chnage so last year we tried it again and i had an allergic reaction. She doesnt want to try cytoxan because she says it doesnt help with swollen joints fatigue or pain, does any one know or have any idea? please give me your suggestions, thank you and sorry for the spelling my hands hurt and keep missing the letters.
    i’m sorry i forgot to mention , i’ve tried cellcept for two years no help sp they took me off, methotrayate for did not help either, we did the rituxamab once it did nothing so we tried it again a year later and i had a severe allergic reaction so no more of that. I am on 200mg plaqnil 2 times a day and imuran3x a day, i also do accupuncture thru kaiser but only for two months now and start biofeed back next week. I have been on permanant disability Social security since i got lupus in 2003(it took 18 months),I’m 34 this happened when i was 27-28. All your answers have been great, if my doctor would try the cytoxan i would be more than willing she doesnt think it will help with the joint pain and swelling or the fatique, I just had an Mri for the headaches today so maybe that will show them something.

  16. blah blah blah

    I have Lupus. My Doctor diagnosed me w/ fibromyalgia ALSO. WHY?
    I have had SLE (lupus) for 1 year now and have been treated with cellcept and prednisone.
    At my last Dr. appt., my doctor diagnosed me with fibromyalgia.
    She did no tests or anything. How does she know?
    I played football for 6 years(many injuries)–I know i have a high pain tolerance.
    ****She said that because my joints were not swollen, I must be amplifying the pain!!***–(amplified pain is the definition of fibromyalgia-you interpret pain as being worse than a normal person)

    I am really angry that my doctor would tell me that I’m just complaining–she’s always telling me to tell her all my symptoms.

    IS SHE CORRECT TO GIVE ME THIS NEW DIAGNOSIS ON TOP OF MY PREVIOUS DIAGNOSIS OF LUPUS???????

    1. Linda R

      Fibromyalgia often occurs in overlap with lupus. They are both autoimmune. Fibro is usually diagnosed by having pain on symmetrical pressure points in the body.

      If you want to know how you doctor knows, ask the doctor. We don’t know what your doctor was thinking or how the diagnosis was made.

      If you don’t trust your doctor, get one you can trust. Lupus is too serious to be treated by a doctor with whom you do not have an open and honest relationship.

      We dont’ know if she was right because we don’t know your symptoms and we don’t know what information she used to make that diagnosis.

  17. RX Queen

    Has anyone with lupus ever taken Lupazol? I heard it’s supposed to work for lupus in 3 days?
    I would like to know if there are any natural alternatives out there that can heal anti immflatory symptoms, as well as help with removing toxins, and helping the immune symptom to not attack the body so much. Please help its for my mom!
    Is it a scam? or has anyone with lupus (SLE) taken it and tell me if its another scam? My mom has been in the hospital since yesterday, because she has pnemonia again. She has it like 2 months ago. Im sick of seeing her sick and tired all the time. She was recently prescribed Cell Cept (500 mg) and Clotrimalzone (10mg) because she had a swollen tongue. Can anyone help? Oh and she has been taking prednisone

    1. LBee

      Sorry about your mom. SLE is a serious auto immune disorder. Lupazol is unknown to me. And I work in Rheumatology. Disregard it. CellCept, Prednisone, Biologic drugs and some chemo class drugs are a much better treatment. I know it is hard to have a sick mom. Trust her doctors. SLE is difficult to harness and treat, but with the right combo of treatments your mom can hope to have her disease controlled. It would be a miracle if there was a 3 cure. Sadly, there is not.

  18. l37esposito

    Lupus? Recreational drugs/ drinking okay?
    I was diagnosed w/ SLE last year… Recently I’ve noticed that my symptoms have been flaring up.
    I’ve seen online that Marijuana use can help with the pain symptoms, but I’m unsure if usage could actually cause these flareups. I’ve noticed that after a night of drinking, etc. my SLE symptoms have seemed worse.
    I am just wondering if anyone has seen any Medical research regarding this? Either way would be apreciated. Thanks!

    1. FYIIM1KO

      What drugs are recreational?If you have lupus I wouldn’t mess around with drinking or any kind of drugs,aren’t you tired enough?I think trying to take the best care of yourself possible,eating right,getting plenty of rest,taking a little walk when your up to it,will far outweigh the benefits you may get from using marijuana.You yourself said that after a night of drinking etc that your SLE symptoms seemed worse.I don’t know what kind of pain your in but personally Marijuana has done nothing for me except made me stupid , extremely paranoid,ravenously hungry and tired,but every ones different,it may be just the opposite for you.Try to do what is most suitable for your body and your mind,in turn you will have some peace of mind.

  19. Jeanie B

    Is it possible for the Lupus rash to be more prominent on the nose and less noticeable on the cheeks.?
    I have several of the Lupus symptoms, however, the rash is more noticeable on my nose. I don’t normally run a fever. My temperature usually runs below the normal 98.6–averaging about 96.5 to 97.5. The days that I feel really run down are the days when my temp jumps up, and then it is about 99.9. Can someone please give me a little more information on Lupus SLE?

  20. cb

    What is the likelihood of false negative Herpes type specific blood test with background of Lupus (SLE)?
    Found out the evil ex husband has been spreading Herpes around society (scumbag) After I left him I found out he had cheated on me with multiple partners (unprotected). I left him 2 years ago. Have had some vague non specific herpes like symptoms. Was tested last week. Blood test came back negative for both HSV1 and 2 antibodies. However I read that immune problems can cause a false negative result. I haven’t been able to find any further information on this and given that I have Lupus (autoimmune condition) I am freaking out a little. Will definitely ask the Doctor on Monday but being that it is only Saturday could use a little reassurance in the meantime.

  21. screamingfreedom

    I agree with the above. See your doctor. Lupus can only be diagnosed by a doctor not a discussion group. Whether it is lupus or some thing else you want to catch it early.

    Most of your symptoms are not consistent with lupus. To be diagnosed with lupus you need to match at least 4 of the symptoms.
    * Butterfly rash
    * Discoid rash
    * Photosensitivity
    * Mouth ulcers
    * Arthritis
    * Inflammation of the lining of the lungs or the lining around the heart
    * Kidney damage, as noted by the presence of protein or other abnormal substances called casts in the urine
    * Seizures or psychosis
    * The presence of certain types of anemia and low counts of particular white blood cells
    * The presence of certain immune cells, anti-DNA antibodies, or a falsely positive test for syphilis
    * The presence of antinuclear antibodies.

    From your list I see 2 that match.

    Any way you should not feel the way you do, so you need to see your doctor and find out what is going on.

  22. kenbfos

    I have severe Lupus SLE and Kidney disease, is there any programs that will dissolve my student loans?
    I was a teacher for eight years until I got sick with stage 2 of 4 kidney disease from my Lupus SLE. I had to leave that job that I loved because of so many reasons. Well I decided after my symptoms got under control some that I would find another profession that would allow me to help children. So for two years I have been earning a Masters in professional counseling, God willing I will graduate this fall. However I have debt still from my fist degree and now the masters. All I want to do is help children but with the degree I will have I will not be making much. Most of my money will go to health up keep. I don’ even have a car or house anymore. I gave up my care and now share an apt with a roommate. My symptoms are worse at times and better others. However I am in so much debt with student loans I don’t know what to do. If anyone has any ideas, or experience with this please let me know. It is hard I was a good student both times and will graduate in the fall with honors and a bill that I can not pay.
    For those who said I should have thought about this before I went into debt. I thought I was going to always be a teacher. Do you know what I got when I got sick, was so sorry, we have to take your health insurance because you have a preexisting disease. I used my money to help get my student what they needed and in return I was told I was an excellent teacher, but now that you have a chronic illness so sorry….. It so easy to tel some one to go get a job, or why did you do something when you are not in the situation. Kidney disease is not fun or easy. I have worked my whole life. Think before you speak, because it could be you who could be loosing everything, life does not recognize last names, race,or gender.

    1. Dariuswife

      My sister has cerebral palsy and she attended college on and off for about 20 years( I guess she was bored). In that time she racked up about $82,000 worth of school debt and was unable to pay it. She called her loan companies (the people who funded her tuition) and explained to them her situation and the sent her some papers to fill out, it think it’s called a Permanent Disability Waiver. Her doctor also had to verify that she was disabled, so they have forgiven about $70,000 of the debt but the only catch is that she is not supposed to work for the next 2 or 5 years (not sure). If she starts even a part-time job she will have to pay the money back. I pray this helps you and good luck, and get well!

  23. chen wei neng

    Does highly elevated antinuclear antibody result to Systemic lupus erythematosus?
    I am now 50 years old woman. I had migrant since 18 years old, I‘ve been eating carfergot for 15 years. But now I am eating intera propranalol (20mg everyday) and the migrant is now well controlled.

    But recently I was detected to have elevated Antinuclear antibody, which is still positive after 1280 titre (normal range is below 80). And the pattern is speckled. With also elevated double stranded DNA antibodies (1.18 titre). My doctor said I have Systemic lupus erythematosus (SLE). But I don’t have any symptoms at all. Now the doctorask me to eat an antimalarial drug called “plaquenil”, 200mg a day. I also have a positive RNP. I have elevated ESR for years. Slightly lower Red cell count, slightly elevated lymphocytes. And normal complement 3 and 4.

    Do I really have SLE? I don’t feel unwell. Should I really eat plaquenil? I haerd it have side effect on eyes but it made me a little bit head ache.

    2 years ago I’ve had an MRI and showed that there was a very small lesion (white point). The comment was “Right occipital subcortical white matter subacute demyelination/ ischaemic change, which could be related to vasospam/vasculitis. Clinical correlation is essential.” I wonder doesit have to do with SLE?

    1. Michael Jacksons Glove

      those blood tests make it seem like you have SLE. elevated double stranded DNA antibodies mean you can have active lupus, which is slowly damaging your kidneys even though you don’t feel it.

      plaquenil is an anti-malaria medicine, but it also has other effects. in the case of lupus, it acts as an anti inflammatory. patients with lupus who take antimalarial pills live longer. if your doctor recommends it, you should probably take it.

      the white point that the MRI shows is a small area of brain damage–too small to have any effect on your health, apparently–and it could be due to the lupus inflaming the blood vessel in your brain. vasculitis means inflammation of a blood vessel, and it can be caused by lupus.

  24. Act4Love

    Should I get tested for Lupus?
    Hi, I’m 16 years old. I’ve been suffering from bumps and redness on my face (cheeks, mostly), and it’s been something which I cannot get rid of. I thought it was just acne. My mom, however, is currently studying to be a nurse, and in her textbook she stumbled upon a picture of the butterfly rash often associated with systemic lupus erythematosus (known as Lupus/SLE). I didn’t think much of it, until my mom and I researched the symptoms.
    These are the symptoms I’m currently experiencing:
    *Rash?
    *Extreme fatigue
    *Depression
    *Joint pain (mostly in my knees and ankles)
    *Migraine-like headaches almost every day for the past month
    *Difficulty concentrating
    *Psychosis
    *Inflamation of organs-last year I was diagnosed with gastreoenteritis.
    *Also, about a week and a half ago my back (around the kidney area) started hurting
    *I thought it was my period, but I have dried up blood that comes out everytime I wipe after urinating.
    *I have virtually no appetite.
    *My vision has been blurred the past few days.
    *The “flares” started about 2 weeks after the fatigue.

    What do you think about it?
    Thank you in advance.

    P.S- The symptoms listed started before I found out about the disease…less chance of psychosomatic diagnosis 🙂

    1. FirstStar

      Yes, you should probably get tested!

      Lupus is an Autoimmune disease, which is caused by both genetic and environmental factors, so, if you have a family history of auto immune diseases (Such as Crohns Disease, Scleroderma, Rheumatoid Arthritis ect…) You are at an increased risk, also if you are female and between 15 to 45.

      It takes awhile to diagnose Lupus, but your doctor will (most likely) refer you to an Internal Medicine Doctor, or may order the test themselves (Blood test! Urine test!) And depending on what the doctor thinks, the blood test will include an ANA (Antinuclear Antibody) test (Very important test!!! if this comes out positive, it could mean Lupus, or another auto-immune disorder!!!)

      Some other blood tests may also include tests for Hep. C, and Hep D, along with a Creatinine test, Bilrubin and Albumin test (Too much to type- Google it!) and ALT test (To see how epic your liver is doing!)

      So YES. Get tested; because like I said, it takes awhile to diagnose because the symptoms mimic so many other diseases; it could take months.

      Good Luck! 🙂

      I’m 17 and had Lupus symptoms too; test results come back in January (Next month!) Hope 4 the best!

  25. Jeanie

    Can lupus cause your period to get wacky?
    I come from a family with 2 generations of SLE, my mother and my grandmother were diagnosed when they were about my age.

    In regards to the “wacky” period, let me preface this by saying that I used to be able to set a clock by my cycle — every 28 days.

    Two cycles ago my period was 4 days early.
    My last cycle was a week late.
    My period is now a little over 2 weeks late, with multiple (6) negative home pregnancy tests.

    Has anyone with Lupus ever had an experience where you missed/had a late period when you started to get symptom of Lupus? I also have noticed my joints hurting more in the past few months, and I seem to be more tired. Both of which I know are symptoms.

    I know I need to see a doctor, but it would be nice to know if someone else has had a similar experience.

  26. 10nis

    What medications are you taking for Lupus (SLE)?
    I currently take Plaquenal for the Lupus symptoms (inflamed joints) and Dilaudid for pain control.

    1. mgnysgtcappo

      Plaquenal is kind of an old school medication for the treatment of SLE. Cellcept is a much better alternative to keeping the immune system in check. It was initially developed as a immune suppressor for organ transplants but has quickly become very popular to treat SLE. Currently there is a time release form of Cellcept called Myfortic. This can help if you have stomach problems with Cellcept. Another tried and true method for treating SLE is prednisone. There are nasty side effects but nothing seems to help with inflammation as well as this steroid. As far as pain goes, I saw earlier that someone mentioned oxycontin. You need to be careful with pain meds as most of them use Tylenol along with the opiate. If you have kidney issues from your SLE then you should take something like Norco, which is Vicodin with a very small amount of Tylenol. Many doctors are getting away from prophalxis antibiotics such as Bactrim. While it is true that Prednisone and Cellcept will make you more prone to illness, long term use of a broad spectrum antibiotic doesn’t seem to really prevent these occurences because bacteria become resistant to the drug. I hope this has helped.

  27. [[JustThatGirl♥]]

    anyone on here with lupus?
    does anybody on here have lupus? [[preferably SLE]] && if you guys do, what are your symptoms and meds that you have to take?
    i want to compare myself to others, since i only know of one other person who has lupus, but its not the version i have.
    thankss guyss!!!
    [[JustThatGirl♥]]

    1. mgunnycappo

      There are a lot of people out there that have Lupus, 1.5 million Americans alone are believed to have SLE. My wife has had severe organ involved SLE for 20 years. We run a Lupus Support Group in our area so that we could meet other people with the disease. It is amazing how large our group has become.

      As far as medications go:

      Currently:

      Myfortic (time released Cellcept) 750 mg (equal to 1gram Cellcept)
      prednisone 5 mg
      Warfarin, a blood thinner 3mg
      Baby Aspirin 81 mg
      Coreg 50 mg (heart med)
      benezapril (blood pressure med) 25 mg
      Norco, pain med, as needed
      Calcium

      Previously:

      Plaquenil
      Cellcept
      Rituxan
      Cytoxan
      Zoloft

      Hope this helps.

  28. jaz mie

    what is SLE(Systemic Lupus Erythematosus)?
    please explain to me SLE (Systemic Lupus Erythematosus) more, so i can fully understand the illness.
    i want to know about the possibility of death on teenagers who suffer SLE.
    are there teenagers who’re aware of their illness and can already predict when they’ll pass away?
    are there cases like this?
    who are the persons who’re usually having SLE?
    what are the causes?symptoms?treatments?
    do they have medications?

    thanks!

    1. unny

      Systemic lupus erythematosus , often abbreviated to SLE or lupus, is a chronic systemic autoimmune disease (or autoimmune connective tissue disease) that can affect any part of the body. As occurs in other autoimmune diseases, the immune system attacks the body’s cells and tissue, resulting in inflammation and tissue damage.

      SLE most often harms the heart, joints, skin, lungs, blood vessels, liver, kidneys, and nervous system. The course of the disease is unpredictable, with periods of illness (called flares) alternating with remissions. The disease occurs nine times more often in women than in men, especially women in child-bearing years ages 15 to 35, and is more common in those of non-European descent.

      Treatment

      SLE is treatable through addressing its symptoms, mainly with cyclophosphamide, corticosteroids and immunosuppressants; there is currently no cure. SLE can be fatal, although with recent medical advances, fatalities are becoming increasingly rare. Survival for people with SLE in the United States, Canada, and Europe is approximately 95% at five years, 90% at 10 years, and 78% at 20 years.

      Symptoms

      SLE is one of several diseases known as “the great imitators” because it often mimics or is mistaken for other illnesses.[7] SLE is a classical item in differential diagnosis,[3] because SLE symptoms vary widely and come and go unpredictably. Diagnosis can thus be elusive, with some people suffering unexplained symptoms of untreated SLE for years.

      Common initial and chronic complaints include fever, malaise, joint pains, myalgias, fatigue, and temporary loss of cognitive abilities. Because they are so often seen with other diseases, these signs and symptoms are not part of the diagnostic criteria for SLE.

      Causes

      There is no one specific cause of SLE. There are, however, a number of environmental triggers and a number of genetic susceptibilities

  29. Lauren

    Having lupus and pregnancy?
    A little background info… i have got mild lupus SLE, was diagnosed very young and also have heamachromatosis.The only symptoms i get are lethargic, muscle cramps, and if i dont eat healthy and stay active then i feel just unwell.

    We are thinking about a baby within the next 2 years but i want to know with my condition are there any things i should be aware of, or anything i should keep an eye out for?

    Does anyone out there have lupus and had children..? what were your experiences? Did you have a flare up while pregnant? Did you have a natural birth or c-section?

    Any info would be great!

    Thanks,

    1. DARKESTKNIGHT

      Hello’ please check with your doctor and ask all the question and explain to your doctor your plans and go from there some people with lupus can do pretty good some can’t I has a friend very beautiful and caring young she have 3 boys and a girl she did’t married her boys daddy she went into the military got married has a little girl a couple of years after that she passed away that was the first time i ever heard about lupus, now i heard about it all the time. check with ur doctor and i wish u the best.

  30. agonisticstudent

    Lupus and Sudden appearence of rash – cause for concern?
    I am a 20 year old female diagnosed with SLE (Lupus) and woke up this morning with rash over most of my body which is also spreading. It has not affected my arms or hands so far and has leveled off now but is still spreading onto my face. The rush does not itch at all, but my face feels slightly sore/wound and my ears are quite red and hot. I do however not have a proper fever only a very slightly elevated temperature. I have not eaten anything noone else ate (and no one else has any problems) or worn any new cloth/new body cream/new perfume or anything which might easily cause a reaction.
    How likely is this to be caused by my lupus? Is this serious reason for concern or probably a rather benign symptom? Would it likely to be an isolated incident or rather a new symptom which might occur a lot from now on? What are the potential treatements and how long would it take for the rash to wear of?

    Many thanks to anyone

    1. Linda R

      It could be lupus. Even those of us with SLE get weird rashes.

      Lupus patients often feel feverish or actually run fevers for periods of time.

      When in doubt always call your rheumy. When people have acute medical issues like a broken leg or strep throat, they follow doctors orders and that’s it. When you have a chronic illness like lupus, you and your doctor become partners in your lifelong health care. Give the rheumatologist a call.

  31. ILuvMyLittleBoy

    Anyone with personal experience or info related to lupus?
    My mother was just recently diagnosed with systemic lupus erythmatous (SLE) after years of going through a variety of symptoms and being told she had every other ailment possible. Because she’s been sick for about 4 years, the doctors have told her that she will have a harder time with getting the disorder into check. She’s only 40 years old, and is just had a really hard time these last couple years. She’s a hospice nurse and told me today that lupus is a hospice diagnosis which would make it terminal? Is this true? I’m a brand new nurse and have been trying to find information about it. I was just wondering if there is anyone out there who has it? If so how do you manage it? Have you been told that it is terminal? Obviously I’m really concerned about my mother, and knowing a little but not everything really makes it worse. I would appreciate any advice. Thanks in advance.

    1. emtd65

      Lupus is not terminal !!! Where did you get such information ? Please educate yourself ASAP ! I have Lupus – SLE and was diagnosed about 10 years ago after being told I had a whole myriad of things and /or that it was in my head. There is no cure but there are many treatments. And any good specialist, usually a rheumatologist, will treat the symptoms. There will be plenty of specialists to be seen according to what the lupus is up to. I see a nephrologist, urologist, hematologist, ophthalmologist, dermatologist, rheumatologist etc……People to not keel over and die from Lupus. About 30-40 years ago the outlook was about 10 years without ever going into remission, but today people live as long as healthy people as long as they take care of themselves. Stay in tune to their body’s, do as their doctors say, know their limits and do not sit around and feel sorry for themselves. After working and volunteering as an EMT I had to step back but I did not sit around and wait to die. Your mom and you should consider joining a support group. Webmd has one which was very helpful early on for me. Also log onto the lupus foundation site. I should mention I am 43 and was diagnosed at 33 – but it was there for many years prior.

  32. New England Babe

    What has your experience with SLE, Systematic Lupus been?
    I have SLE with a possibility of Sjorgrens Syndrome and they are talking about putting me on a Cytoxan regimen. I have few muscle symptoms but a lot of others.

    I guess I am just looking for other peoples stories and experiences that may just give me some clue and clarity as to what other people have and are going through.

    1. Linda R

      I have SLE with major organ involvement. At the worst it was heart, lungs, bone marrow, blood and kidneys along with some cognitive dysfunction.

      In hospital, 5 years ago, I had lung tap, all kinds of scans, upper and lower GI tests, bone marrow biopsy and then pulse IV steroids, IV methotrexate, IV antibiotics and breathing treatments.

      Six months later I had a kidney biopsy and went on Cellcept. For people who tolerate it, Cellcept is a nice alternative to cytoxan. There are less side effects and it can be taken in pill form rather than IV infusion.

      Now the protein in the urine (24 hours) just hit lower than 100 mg. I am only on plaquenil 200 mg 2x a day and 250 mg Cellcept. I work 7 days a week but not full days. I also manage to practice yoga and meditation at least once a day and walk 2 miles each day. I have been off disability for a year.

      I use hand sanitizer and try to stay away from sick people, get a flu shot annually and see my rheumy every three months for a complete blood count, complete metabolic panel, 24 hour urine with creatine clearance.

      Why cytoxan? Do you have kidney or other major organ issues? Cytoxan can cause infertility so you might want to explore other options first. There are some good clinical trials going on. You might want to check those out, too.

  33. plunk656

    How can a person know how long they have had Lupus before they were diagnosed?
    I have just been told that I have Lupus SLE and was wondering if anyone knew how to tell how long you have had it, before it was detected? I can’t remember ever having any of the symptoms before, but I have read a lot of articles that stated that some people were misdiagnosed for 5 to 7 years before they found out that they had Lupus. Thanks for any help you can give me!

    1. Ann K

      I don’t think there’s any way to be certain how long you’ve had the disease before being diagnosed. Lupus is very hard to diagnose because the early symptoms are so mild that they are dismissed as just “normal” illnesses. Some of the warning signs are persistent colds, headaches, joint pain, rash, swollen lymph glands, extreme tiredness, and depression that don’t respond to medication or treatment. Most times these things are blamed on stress. My daughter suffers from Systemic Lupus. It took several years for her to be diagnosed. By then the disease had progressed and symptoms became more apparent. I am sorry to hear of your diagnosis. If I can be of any help to you, please feel free to email me. I know what you’re going through and I can probably answer a lot of questions you might have. If ever you need a friendly ear, I’m available.

  34. Jenell

    Will Discoid Lupus give you symptoms?
    For years I have suffered from extreme fatigue, constant headaches, anxiety, depression, constantly being sick. I found out last week that I have discoid lupus via skin biopsy. Could this be the cause of my troubles? I got blood take to test for SLE and I don’t have that.

    Thank you!
    will discoid then only affect the skin?

  35. Lady Prism

    People diagnosed with Lupus… need help and info!?
    I do not wish to write a paper about all the details and symptoms, so I’ll just summarize, then ask my question.

    Over the last 5 years, I have had symptoms of EXTREME fatigue, joint pain, canker sores, mild hair loss, etc. I am also anemic (which no amount of iron or B vitamins changes in the slightest). In this time, I have also had a false positive Syphilis test, and chronic kidney stones (3 in 7 years).

    In August of 08, I developed a cough that STILL has not gone away. I have been to TONS of doctors and been diagnosed with pneumonia, asthma, bronchitis, allergies, etc, and put on more antibiotics than I care to think of… all the antibiotic treatments actually made me feel worse.

    I also developed a sudden, strange rash on my leg after being out in the sun for a couple days… which also has not gone away. And more recently, I have a light butterfly rash on my face.

    Last month, I finally found a doctor that said “Wow… 8 of the 11 symptoms of Lupus… let’s get you tested.” I was x-rayed to check for Pleurisy (in the lung tissue), and put through about 10 blood tests (also checking for lyme disease, just in case).

    Even after the false positive Syphilis, and the anemia, I tested negative on the ANA test. Kind of. I tested higher than normal, but apparently too low to make a full diagnosis of Lupus.

    What does this mean exactly? Is there such a thing as borderline Lupus? And I know there are a few other diseases that mimic Lupus… but what are they? I know that Fibromyalgia is one of the “mimic” diseases, but would that also account for the blood disorders that I DO have and the rashes?

    I do have another appointment with my doctor in a couple weeks, and I also know that making a Lupus diagnosis can sometimes take a while… but has anyone had the negative ANA issue and still been diagnosed with SLE? And what was your experience… anything I should ask my doctor to look for on the next visit?

    Thanks!
    Oh, they did also check my thyroid… everything normal there.

    And should I mention, also, that my symptoms began during pregnancy and have gotten progressively worse? This has been going for about 5 years… and just now I’ve screamed loud enough that I am being taken seriously.

    1. Constance

      Unfortunately it may take years to DX Lupus. I had all of the symptoms you do and saw a Rheumatologist for about 5 years before my ANA was positive. In the 5 years I also had a pos. Scleroderma and Sjogrens. All along my doctor said that probably I would develop Lupus buy it was a wait and see. Keep a diary of your symptoms and continue to see your doctor. Hope this helps.

  36. ProactiveMom

    Is it hard to diagnose Lupus in a teen with no positive labs?
    There’s a strong family history and several symptoms (including butterfly rash) lasting for almost 4 months now. Rheumy says he ruled out SLE.

  37. Lor

    Is SLE (Lupus) compatible with taking birth control pills?
    Will birth control pills make the Lupus symptoms worse? It is Loestrin 24 FE–the pill with the lowest estrogen amount. Thanks.

  38. MaluLanix0x

    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?

    1. Linda R

      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.

  39. kaeylarae

    Coeliac Disease? Systematic Erythromatus Lupus?
    Ok. I have Coeliac or Celiac Disease. I was wondering if anyone out there can help me. I know in some cases SLE can be associated with this. I tick a good few of the boxes with SLE symptoms IE, Rashes that wont go away.On my arms but especially purplish spots on my legs that dont go away when pressed.Also Joint pain in bones and and swelling,depression,severe weight loss,muscle loss..Severe unknown cause of Anaemia requiring regular blood transfusions.I haven’t had a period since i was 32 as I had an Hysterectomy.I have had checks done to see if I am bleeding internally but these were negetive.Seizures and blackouts.poor memory..Just to name a few. My doctor does suspect I have SLE but I haven’t had more intensive tests done as yet. Can anyone tell me a bit more about the possible link between the 2 diseases and also as I am seeing my doctor this Friday.Should I bring the matter up again?. I hate being ill. I just want to know what is happening to me. I have been ill since I was 29 and I am now 38.I lost 7 stone (yes I was hugely overweight) but this was done without dieting.The weight has just fallen off me.I am tired all the time.I don’t sleep well due to the pain I am in and also have Scoliosis of my upper spine.Any info would be of great help.Many Thanks in advance

    1. Ginny Jin

      You definitely have an autoimmune problem. The rashes and blackouts are more suggestive of Lupus. But you can have 2 illnesses at the same time. My opinion is that you have an extremely comprised immune system caused by one of the following – environment (poor living conditions), stress, travel, bad sleep pattern, or excess use of alcohol/caffeine/soda.You no doubt have a wheat/diary intolerance. Cut those. Take magnesium for nerve function. Try pilates.

  40. planty

    How common is it for Lupus (SLE) to run in families?
    I have 2 sisters who have been diagnosed with Lupus and I have many of the same symptoms, (I have a check-up tommorow in which I am going to request an ANA test). Is this common or do my sisters and I have bad health genes? No one else in my family has been diagnosed with Lupus that I am aware of.

    1. Cammie

      Lupus is an auto immune disease. It does run in families as do autoimmune diseases.
      I have a cousin with Lupus, Dad died of Scleraderma [ sp? ] and I have Cushings and diabetes.

      Good luck to you.

  41. sondra w

    I have Sle and suffer from chronic pain any suggestions on how to live a normal life?
    How to live a normal life when your pain is different everyday.
    I am the typical story, I suffered for one year with doctors disbelief that something was wrong with me even after the rash broke out covering almost my entire body, it wasnt until I ended up in the ER for two weeks when I finally got the definete answers to my elements. I have SLE,discoud lupus, now lupus nepritis and so on. Now my first indication that something was wrong with me was joint pain(i thought carpool tunnel), but the pain eventually spread everywhere and then the fatigue, and then swollen joints and raynuads syndrome,so of course then fibromayglia. When I left the hospital I wasn’t as fatigued but the pain never went away nor the joint swelling, just a differnet joint everyday,so for five yrs I’v been on oxycotin and percocet to live a more pain managed life, but sometimes my symptoms get even worse( how could they?) they do basically my joint pain becomes every joint, the pain medicnes stop working, I cant walk without a walker or I walk very slow and painfully, so I tell my doctor as always andwe run more labs, platlets at 60K,but not low enough for her to be concerned shes waitin for mor test results, she says that although I have these sypmtoms including a lovely rash, that my lupus may not be active. Please anyone is this BS or what? Can you have what is obviously a flare and it not be your lupus causing it? right now i am on imuran and plaqnil and i was on predinose for 4 years straight and finally said no more because it wasnt controlling these elments, she wants to but me back on it to bring my platlets up, but i know once i go off they go down again, I have been on every medicatio for sle and none have changed anything, I have had rituxan injects no chnage so last year we tried it again and i had an allergic reaction. She doesnt want to try cytoxan because she says it doesnt help with swollen joints fatigue or pain, does any one know or have any idea? please give me your suggestions, thank you and sorry for the spelling my hands hurt and keep missing the letters.

    1. gillianprowe

      I have Rheumatoid Arthritis and some elements of Lupus, test positive for Lupus. However after many years of BS as you correctly say I went to another Country to get out of the BS. The Rheumatologist I saw their suggested I try Evening Primrose Oil, but I will be on it for LIFE and if I stop taking it, will have to start again. It takes about six weeks to kick in, but if I stop for one day, then I am back where I started. I did not I stuck with it and am still here to tell the tale. Evening Primrose Oil is a natural anti-inflammatory and it helps regulate the hormones, which seems to have been the problem. Now 50 I am Menopausal and my health is a lot better than it was in my 30’s, my only wish I had know about evening primrose oil back then. Best of Luck

  42. Sparky

    I am still in the diagnosis process. So far confirmed Sjogren’s, Crohn’s, pseudo-tumor cerebri & fibromyalgia. I have a positive ANA test and am waiting for 6 more blood test and a urine test to come back from the lab. I am 47 years old and have had poor health for the past 20 years. I am allergic to everything…haven’t been able to be out in the sun in years, had a mini-stroke in May, cognitive dysfunction now, kidney flank pain (non-stop). I have had a severe headaches daily for 3 years, chronic joint pain/inflammation. . I am pretty positive that I will be diagnosed with SLE Lupus but a part of me thinks they will once again tell me that it is in my head and that everything I have been experiencing is not there because this has been happening on and off again for the past 20 years. I hope someday that the doctors will get enough training that it will not take so long before getting a diagnosis. My question for everyone how do you regain the cognitive part because this is the part that bothers me the most honestly. I need my brain to function for my job and so far this past year that is not working so well. Thanks for any ideas. I guess I should add that gingko biloba has not helped and has actually caused breathing problems due to an allergic response.

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