Tell Me About Lupus

[luvsJack]

A relative that I am very close to just found out she has Lupus. She is 36 with two children, 6 and 9 and a very demanding job (highly stressful a certain points in the year).

I have read a lot online about it but thought there may be someone here with Lupus or that has first hand knowledge of the disease.

Any info greatly appreciated.

 

[charlie,nj]

Hi I know nothing about lupus, but this just happened to be in my local newspaper today..


HEALTH
Great progress made in lupus treatments

Wednesday, March 31, 2010

Dear Dr. Donohue: Please say something about lupus. What are the symptoms? What causes it? Is it fatal? - D.F.

When illnesses are classified, lupus is put in the same group of conditions to which rheumatoid arthritis is assigned. It's a multisystem disease, one that affects many organs and many tissues. Among them are joints, skin, blood cells, kidneys, nerves, heart and the nervous system. It's a disease in which the immune system is responsible for most signs and symptoms. It wages war on involved organs. Evidence of the immune attack is seen in the strange antibodies found in the blood.

Signs and symptoms include painful joints, muscle aches and weakness, kidney involvement as demonstrated on lab tests, a drop in infection-fighting white blood cells, a similar drop in clot-forming platelets, disturbances of the heart and heart valves, and inflammation of blood vessels. Several different rashes might appear on the skin. One typical rash is the lupus butterfly rash. The cheeks become red, and those red patches are connected by a wide red line that crosses the bridge of the nose and produces a silhouette resembling a butterfly. Lupus patients lose their energy.

This all sounds very grim. However, not every patient has all these signs and symptoms. The illness tends to go through cycles when symptoms diminish alternating with periods when they worsen. Prolonged exposure to the sun can trigger an interval of worsening symptoms.

Lupus used to be fatal. It is rarely still fatal, but medicines have made this illness one that most endure without making huge changes in their lives. The 10-year survival rate for lupus patients approaches 90 percent.

I won't list all the drugs used for treatment. Take my word. There are many effective ones.

The booklet on arthritis and lupus speaks of both illnesses in greater depth. Readers can order a copy by writing: Dr. Donohue - No. 301, Box 536475, Orlando, FL 32853-6475. Enclose a check or money order for $4.75 with the recipient's printed name and address. Please allow four weeks for delivery.

Readers may write DR. DONOHUE or request an order form of available health newsletters at P.O. Box 536475, Orlando, FL 32853-6475. Readers may also order health newsletters from www.rbmamall.com.



link to piece from the Jersey Journal





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[Poohlovr]

My daughter has lupus. As far as I know, hers seems to be attacking her skin and kidneys, more than anything else.
She also has fibromyalgia in conjunction with the lupus, which her doctor said is a common finding.

She has pain--a lot of joint pain--but I think most of that is fibro related. She has a lot of difficulty sleeping. Fibro and lupus related, if I'm not mistaken.

She is a member here, but is at school right now. I'll have her get on when she's home and she can pretty much tell you everything you might want to know.

There is some sort of meeting in DC next month with researchers, physicians and patients. I'm not exactly sure who or what all is involved. She has been nominated by her rheumatologist to be member of this discussion panel. I know she's really hoping she gets selected to attend.

She has been in a study for several years for a new lupus med that is due to be released this year or next?

Anyway, I'll have her get on here and she can answer any specific questions you have.

 

[luvsJack]

thanks to both of you. And Poohlovr, that would be great. Tell your daughter I would really appreciate it.

 

[Shellie722]

What would you like to know? I am Poohlovr's daughter and have been diagnosed with lupus, reynaud's syndrome, and fibromyalgia. My lupus diagnosis was almost 7 years ago & I have learned ALOT in that time...I can even interperet my own lab results now. My nurses always show them to me or make me a copy and I highly recomend any lupus patient get copies of all lab work they have done and take it with them to dr visits. Will save them alot of un-needed sticks when one dr repeats the same test another just did b/c they don't have the results or even know what labs another dr has ordered.

General info- it is an autoimune disease which can affect any organ in your body. There is no cure (YET!) and somewhere between 80 & 90% of patients are female. It is most often diagnosed between the ages of 18 & 40. Because it can & does present differently in different patients it is hard to diagnose at times and the most important thing is treating and managing symptoms. The most commonly affected organs are the skin, joints, kidneys, and lungs. About 75% of lupus patients are photosensitive and UV exposure will trigger increased symptoms and disease activity in those patients. (Thankfully, I am in the minority on this one & have no issues w/ the sun or UV lights).

There are only 3 drugs currently approved by the FDA for treating lupus- aspirin, prednisone, & plaquenil and nothing has been approved since Eisenhower was president. Dr's do use alot of medications "off label" though. The most common is probably the RA drug, methotrexate. Anti- rejection and cancer drugs are often used as well, especially when there is organ involvement (particularly the kidneys, liver, lungs, or heart). Cytoxan, Rituxan, & Imuran are some of the drugs drs use to treat lupus even though they are not actually approved for this. I have been on Imuran for about a year & FDA approved or not, my kidney labs have held steady & even improved some after several months of being pretty bad.

The first new treatment in over 50 years will hopefully be released to market by the end of the year. The phase 2 & 3 clinical trial results are showing it to be effective/helpful in about 60% of those enrolled in the trials. I have been on it for about 6 years as part of the phase 2 study and in my experience it is the best medication ever. Most of the other people I know with lupus live on a steady dose of prednisone & plaquenil (steroid & anti-malarial), both of which have side effects as bad as the benefits are good. Quite a few also have had to quit working, cut back their hours, or find a less stressful job. I firmly believe my dr when he tells me that w/out the study drug I would probably be on disability by now given how bad my labs were when I first enrolled in the trial.

This is getting really long & I don't want to put you to sleep but there are a couple of things I really think are important for both the patient and their friends/family members to understand. One is the brain fog, which at times requires extra patience both from the patient and those around them. 90% of all lupus patients experience cognitive issues at some point and to some degree. Also, lupus is often an "invisible illness". Somebody may look perfectly fine and healthy when in fact they couldn't feel further from it and lupies (a term lupus patients commonly use to describe ourselves) often get fatigued easily. This is one of the hardest things for me as I like to be constantly in motion. The fatigue is often complicated by insomnia which makes it even harder to deal with. I recomend every lupus patient or anybody who is interested in learning more about the disease check out the Lupus Foundation of America's website www.lupus.org and The Lupus Book by Dr. Daniel Wallace. He is one of the top lupus specialists in the world.

The best explanation I have ever seen on what it's like to live with lupus is The Spoon Theory which you can find on the author's site www.butyoudontlooksick.com

Also, stay away from anything telling you that lupus can be cured by eating a certain diet or by taking certain supplements. That is simply not true & alot of times can end up making somebody even sicker.

OK, I really am done writing for now....especially since I really need to take my meds & attempt sleep. But feel free to PM me if you or your relative have any questions. I have links to a couple of good online support groups & message boards I can give ya'll as well if you'd like.

(((hugs))) to you both.

 

[Poohlovr]

Bumping for luvsjack

 

[dejr_8]

My wife has LUPUS (for the last 25 years). The one thing to remember is there is not a typical case of LUPUS.

My wife had a severe case of LUPUS Nephritis in 1991. Her treatment at the time was classified as Heroic since it was new and viewed as a last resort. Now that treatment is considered routine and is very successful.

The medical community continues to make strides in treatment and I know that several biotech drugs are in development for LUPUS.

 

[Shellie722]

Yep, several treatments have been in trials but only one has actually been successful and considered an improvement/ met statistical requirements for safety vs current standard of care. 2 trials were recently pulled because of serious side effects, one failed in phase 2 trials so could not gain approval for phase 3 trials and two drugs that are currently approved for other conditions that had been in trials had their trials ended early because of the lack of effectiveness vs current standards of care.

The good news is that the studies conducted by Human Genome Scientists have been statistically success and are under review for approval by the FDA. It is hoped that the applications will be completed by the end of this quarter and that the treatment will be on the market by the end of this year.
It is a protein based biologic which bonds to B cells and in effect acts as an immunosupressant. I have been enrolled in the clinical trials since the first round of phase 2 trials and can tell you that in my experience it is extremely effective and has few side effects. The FDA granted it fast track status due to the lack of safe, effective treatments (most treatments are just to help control the symptoms) and due to the first two rounds of trials being such a statistical improvement over current standards of care.

Hopefully by the end of this year all lupus patients will have this available as an option in their treatment and management of this disease.

If you are interested I can give you links to the articles and reports on the trials or you can read on the LFA website about BenLysta. HTH!

 

[SingingMUA]

I have Lupus. I was diagnosed in January of 2008 after being hospitalized in December 2007 with a DVT and Pulmonary Embolism. My sister-cousin (she was my 1st cousin, but we were very close like sisters, so we always called each other "sister-cousin") was diagnosed with Lupus when she was 21 years old, and she passed away from complications of Lupus in 2004 when she was 30 years old.

As another poster said, there is no such thing as a "typical" Lupus patient. However, if I had to "grade" my Lupus, I would say it's relatively mild/moderate. I, thankfully, do not have kidney (or any other major organ) involvement. I DO however have hematological/vascular involvement (fancy way of saying that I'm prone to blood clots), and will have to take Coumadin (warfarin) for the rest of my life. I also have the butterfly rash when exposed to the sun, joint pain, fatigue, fevers, insomnia, hair loss, anemia, Vitamin D deficiency, "brain fog", and Raynaud's phenomenon.

The medicines I take to control my disease activity are: Coumadin (blood thinner), Plaquenil (anti-malarial/immunosuppresant), Vitamin D (I'm Vit D deficient), Iron (anemia), Celebrex (joint pain), and Trazodone (insomnia).

I have good days and bad days, just like most people do. However, I think a "bad day" to a Lupus patient, has a slightly different meaning than the general population. To a Lupus patient, a bad day could mean anything from dealing with a rash, or joint pain or fatigue, to dealing with a fever and not being able to get out of bed, to dealing with dialysis and hospitalization.

For me, having a set schedule/routine is pretty important in helping me to feel my best. Keeping a pretty set bedtime and wake up time help me to feel much better than keeping erratic waking and sleeping hours. I've also begun to work out (as I have quite a bit of weight to lose... unfortunately for me, weight loss was not one of the Lupus symptoms that I got... ), and that helps as well, and will ultimately help SOME with my joint pain and fatigue.

When I was first diagnosed, I was pretty upset. I had lost my cousin to the disease a few years before, and it hit me hard that I would be dealing with the same disease that she did. However, I soon learned how different our experiences would be, as she had a more "severe" case. She had lots of organ involvement, and ultimately had a kidney transplant, among other things.

I've learned, though, that I can live my life to the best of MY ability... and while MY best may not be as good as someone elses best, I can still be happy and enjoy the life I have, and I've learned to have a new appreciation for each and every day I am blessed to see.

 

[luvsJack]

Thanks to all of you for the information. I haven't had the chance to talk to her very much since her diagnosis because of her work schedule right now. Hopfully she will be able to take some time off soon.

I know that she has had kidney problems in the past and she has had a huge amount of joint pain. I felt so bad for her the last time I saw her because you could tell how much pain she was in by the way she walked.

Its sad that we can do so much technologically but have diseases such as this that have no cure.

 

[a1tinkfans]

Just sending hugs and prayers for all you that suffer from lupus.

Years back a lovely girl I knew passed on from Lupus...she struggled for many years and tragically was not fortunate to be able to fight any longer. She was an amazing, upbeat beautiful girl inside and out! RIP Linda!