Results 1 to 7 of 7

Thread: Johns Hopkins Lupus Information

Hybrid View

  1. #1
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,742 Times in 1,211 Posts

    Default Johns Hopkins Lupus Information

    I ran across this page and it is so full of fantastic information I have to share it. I am going to paste a piece of the article here but PLEASE go read the entire thing. It is full of fabulous information! I did break the rule about pasting full articles but I felt it was needed and I did post it in the news section


    The following is a transcript of a talk Dr. Petri gave at the British Columbia Lupus Society Symposium in November, 2002.
    What are the Symptoms of Lupus?
    First off, lupus is not rare. But we definitely need a spokesperson. We need someone famous to take on lupus as their cause.
    The problem with lupus is, people can't tell how sick you really are. That's one of the reasons lupus doesn't get the respect it deserves. When my patients apply for disability, often they are turned down. One of the major things that happens in lupus is chronic fatigue, and there is no way to measure that.
    Looking at the malar rash in lupus, how does a doctor know it isn't the worst acne? Because it spares the areas around the nose and under the nose that are shaded from ultraviolet light.
    How do you know if it's lupus or another form of arthritis? Well, hopefully with diagnostic tests. In addition, the arthritis of lupus is not deforming. The ligaments and tendons around the joints loosen, but there is not permanent destruction of the bones.
    Memory problems bother patients on a day-to-day basis. This is a huge problem, and we don't know why. In lupus patients, we are often overlooking fibromyalgia. Thirty percent of my patients have fibromyalgia. You are tired, you hurt, and nothing your doctor does helps. Fibromyalgia is not inflammatory. It is a resetting of the pain thermostat in the brain. I suspect it has more of an impact on your day-to-day life than your lupus, if your lupus is not flaring.
    Another symptom is hair loss, called alopecia. In the discoid form of lupus, hair loss will be permanent. I have patients, 15 or 16, who will have to wear wigs the rest of their lives because their diagnosis was delayed and they already had permanent hair loss.
    Did you know that one out of five women have a positive anti-nuclear antibody test? Having anti-nuclear antibody is very common, but the great majority of people will never get sick. This is why the diagnosis of lupus is not just based on the positive ANA test. Something else has to happen to prove the person really has lupus, like the skin rashes, the joint inflammation, the kidney disease, and the low blood counts.
    (top of page)
    Is Lupus an Autoimmune Disease?
    It turns out there are a lot of people who have an autoimmune disease that just affects one organ. A common example of this is autoimmune thyroid disease. I know that one out of every ten lupus patients has low thyroid. But most people who have thyroid disease have nothing else happen.
    Did you know that doctors have just discovered that some very common chronic illnesses are autoimmune? Diabetes, for example, especially the juvenile form, is autoimmune.
    Did you know that hardening of the arteries is autoimmune? Cholesterol lowering drugs called Statins, work not just because they lower cholesterol, but perhaps because they have an anti-inflammatory action. They prevent the plaque from rupturing and blocking the coronary arteries. So, it's fascinating how important autoimmune disease really is in many kinds of diseases.
    Rheumatologists get involved when more than one organ is involvedwhat we call "systemic" illness. There is a kind of systemic illness called undifferentiated connective tissue disease. It's obvious to the physician that the person has an autoimmune problem, but they don't meet the definition for lupus or scleroderma or rheumatoid arthritis. For example, it could be a young woman who has a positive ANA and Raynauds. Or, it could be anyone who has a positive ANA or arthralgia, but we don't see swelling of the joints.
    During the silicone breast implant controversy, it was thought that silicone might be causing illnesses like lupus and scleroderma. Then it was discovered that even women who had never had a silicone breast implant could get these mild forms of autoimmunity. In fact, five out of 100 women in the United States have these mild forms of systemic autoimmunity. Autoimmune diseases are not rare. If five percent of women have an autoimmune disease, that should be considered common. If we could just understand autoimmunity, it would have such a huge impact on the health of every country in the world. In the United States, there are 300,000 people with lupus. Worldwide, there are three million.
    There are famous people with autoimmune disease. Barbara Bush and her husband, the ex-president George Bush, both had autoimmune thyroid disease. One of their sons had colitis. But the member of their family that got lupus was their dog, Millie. Dogs can get lupus. Vets can diagnose it because dogs can get the same malar rash that human beings do.
    Now, Millie wrote a book about her life with lupus. It's a great story, because Millie had a successful pregnancy. So, I think it's a nice story to tell patients with lupus. Millie has since died of old age. The current dog in the White House, Spot, is Millie's grandson. But because Spot is male, he's unlikely to get lupus. We think the autoimmune story has ended!
    (top of page)
    What do we Know About Lupus?
    There are thousands of researchers worldwide trying to figure out lupus. The reason it's so complicated is because so many things contribute to getting lupusgenetics, drugs, infection, ultraviolet light, and hormones. Then we have the immune system. We don't really know what's going on in the immune system when people get lupus. There seem to be abnormalities in every single part of the immune system. So, what doctors measure is what comes out the other end.
    When you develop lupus, you make antibodies against self. Your immune system goes doubly wrong when you have lupus because not only are you making antibodies against yourself, but your immune system doesn't work as well against infection. It's very unfair! But that's what lupus is all about antibodies against self. Now, your doctor measures those antibodies when making a diagnosis, but we also measure complementC3, C4 and total complement, because the complement proteins are used up in the blood when you have immune complexes. So, when your antibodies against yourself bind to your cell proteins, they form the "immune complex", and that complex activates complement. As complement is used up, the complement levels become low. Then, of course, we measure inflammation. Inflammation can be present without pain or other abnormal feeling. This is why ongoing surveillance is so essential when you have lupus. When I was chosen to serve on a committee of the American College of Rheumatology to give guidelines to physicians, we recommended that if you have lupus, you should be seen about every three months, even if you're feeling well.

    Ten percent of lupus patients are male. The composition of lupus patients changes depending on what area you are in. It is more common in African-Americans and Asian-Americans in the United States. That probably represents genetic issues that are not yet understood.
    Our average patient in the U.S. is diagnosed in their 20's and 30's. I suspect in Canada the age of onset might be a little bit later. In Sweden, for example, the age of onset for lupus is late 30's, early 40's. Now, if we could only understand those genetic influences!
    I'm sure you ask yourself, What can I change in my lifestyle that can make my lupus go away? Studies of diet have not suggested any benefit at all. Another diet study was done on Omega 3 fatty acids. The study showed there was no benefit whatsoever.

    (please click the link below to continue reading. It really is worth it!)


    http://www.hopkins-arthritis.org/arthritis-info/lupus/
    Last edited by tgal; 01-27-2012 at 11:36 PM.
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  2. The Following 9 Users Say Thank You to tgal For This Useful Post:

    angiefaye (06-16-2012), BonusMom (01-28-2012), E42brchick (02-21-2012), Gaye (03-05-2013), Gizmo (01-27-2012), kcduner (03-11-2012), Larette (01-28-2012), magistramarla (01-27-2012), n.mac (01-28-2012)

  3. #2
    Join Date
    May 2011
    Location
    Colorado
    Posts
    645
    Thanks
    456
    Thanked 353 Times in 232 Posts

    Default

    This is great, thank you Mari! Hope things are improving for you.

  4. #3
    Join Date
    May 2007
    Location
    Seaside, Ca.
    Posts
    3,871
    Thanks
    196
    Thanked 948 Times in 732 Posts

    Default

    Thanks for this, Mari,
    I found this very interesting: "we recommended that if you have lupus, you should be seen about every three months, even if you're feeling well".
    This is what really bugs me about my rheumy - she only wants to see me twice a year, and only asks for blood work every 8 months or so.
    My last rheumy was adamant about seeing me AND doing lab work every 6 weeks or so.
    I wonder which one is right?
    Hugs,
    Marla

  5. #4
    tgal's Avatar
    tgal is offline Super Moderator Super ModeratorEmperor of the Solar System
    Join Date
    Jan 2010
    Location
    Houston, Texas
    Posts
    4,521
    Thanks
    1,547
    Thanked 1,742 Times in 1,211 Posts

    Default

    I would say he is but that is because I think he has an understanding most don't. What I found very interesting was the comment about steroids. 1 in 4 women would be dead withIn 4 years without them.... Wow!
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







  6. #5
    Join Date
    Mar 2011
    Location
    pinjarra, western australia
    Posts
    2,944
    Blog Entries
    1
    Thanks
    1,407
    Thanked 1,633 Times in 1,120 Posts

    Default

    i read, then reread this report.

    it is now 10 years old.
    but it still states things that we (whl members) ague with our doctors about, every day.

    the doctor fraternity have not really listened to reports like this.

  7. The Following User Says Thank You to steve.b For This Useful Post:

    tgal (01-28-2012)

  8. #6
    Join Date
    Feb 2012
    Location
    Missouri
    Posts
    4
    Thanks
    6
    Thanked 0 Times in 0 Posts

    Default

    Thanks Mari...I too had to reread it twice. I'm glad my rheumy insists on 3 month check-up & lab even if I'm feeling well. What I found very interesting is the info on the drug Remicade. This drug can cause your body to produce lupus antibodies. My mother took this about 7 years for her RA. She started having so called reactions to it, and at the time I thought her symptoms seemed more "lupus like".

  9. #7
    Join Date
    Sep 2008
    Location
    maryland
    Posts
    236
    Thanks
    0
    Thanked 4 Times in 4 Posts

    Default

    That is where I go for treatment! My rheumy is Dr. Rebecca Manno there
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •