[big rockpile]

My DS White Cell count has been up for a long time and he has not been well.The Doctors have decided he has Lupus.

What can you guys tell me about this disease?

big rockpile

 

[Arkie1]

There's a lot of information here:Lupus Foundation

 

[paintlady]

My sister has Lupus. It is a nasty disease. It affects the autoimmune system and attacks the connective tissue in the body. She has had it for many years and now is on dialysis as it attacked her kidneys. It can also affect the sight. People with Lupus have to avoid the sun and heat as it causes " flares". There is no cure for it and it gets progressively worse with time. My sister takes tons of medications. Sorry for the bleak outlook for your DS. I should also mention that my sister has been dealing with this disease for 40 years. Hopefully, they are working on finding a cure.

 

[HeavenHelpMe]

Please make sure you get more than one opinion on this. My cousin was diagnosed with lupus, and they treated her and she only got worse. Turns out it was a misdiagnosed and she had cancer instead. She didn't get a second opinion until 3 years later and it had then spread to her pancreas and liver, and was told she had 3 months to live. She wound up living about 6 months, but it was even harder on her family knowing that she was being treated for the wrong disease for so long and it cost her her life.

I know doctors and testing are expensive and time-consuming. But if your son is interested in having more time to live his life, he really needs that second or even third opinion.

 

[bumpus]

.
Lupus Info


http://www.niams.nih.gov/hi/topics/lupus/tengo/english.htm




Pictures of Lupus

http://images.search.yahoo.com/sear...fp-t-471&va=lupus&sz=all&imtype=&imqualityall

 

[Meg Z]

Although men can certainly get lupus, and other autoimmune diseases, it's far less common in men. If the doc is diagnosing this in a man, then I'd have your son make sure they can explain the chain of test results to him, and really show they did some work to come up with this as a diagnosis, since there's no definitive test for it. However, usually the men go undiagnosed for a longer period of time than women, simply because it's less common annd not looked for. Perhaps this doc is really on the ball. Either way, the doc should be able to go over all the tests, with all the whys and wherefores, and explain every step in his diagnoses.

I've got lupus. It's not one of the most fun things in my life.

Meg

 

[paintlady]

I have a male cousin with Lupus in addition to my sister. My daugher has endometriosis which is another autoimmune nasty critter. Is there anyone else in your family with Lupus? I would get a second opinion too.

 

[big rockpile]

Well at first they thought it was Cancer,run Test and ruled that out.

From what I've found it don't look good.

Is this genetic? I know he has other problems he got from me.

big rockpile

 

[cider]

My DMIL's best friend had lupus ever since I knew her. That's been 30 years. While not fun she has lived a good long 85 years.
God Bless.

 

[tn_junk]

I have an autoimmune disease that is similar to, but not as bad as, lupus. Gots to take pills for the rest of my life so my body doesn't get confused and try to reject my organs as foreign objects.
Might want to check on Lyme disease. I think that the symptoms are very similar, and in men, it is much more likely lyme than lupus.

galump

 

[Meg Z]

Is this genetic? I know he has other problems he got from me.

big rockpile

It's not genetic in the better-known, parent-to-child sense, but there is a genetic link. If one person has an autoimmune disease, that increases the likelyhood that others in the family may develop an autoimmune disease, too...but not necessarily the same one. There are lots of other factors, things that trigger onset, and the whole package isn't yet clearly understood...but they're working on it!

Paintlady mentioned two different autoimmune diseases in her family. In my family, there's me with Lupus, Raynaud's phenomenon, Sjogren's syndrome, and rheumatoid arthritis, and a first cousin that died from a combination of Hammond-Riche Syndrome (sp) and Fibrillary Glomerulonephritis, both autoimmune diseases. I got the better batch. Nancy lost the fight at 42 years old.

Ensure that the doc can describe his route to the diagnosis...or get another doc!

Meg

 

[SunsetSonata]

First thing I would do is not panic. Not that you are, but I'm sure there's still the old info out there that says 80% of those diagnosed survive to see another 5 years. When I was diagnosed myself a few years back, I read that from several sources including the local lupus foundation, and I about had a heart attack. So if you read that out there too, that info is outdated. In fact my rheumatologist says she has yet to lose a patient directly or indirectly from lupus, and she's been doing this for something like 17 years. I don't doubt that she will eventually lose some stubborn old mule who won't do what he or she is supposed to do to stay healthy.

The symptoms and outcomes of lupus are extremely variable, manifesting itself in one or several of many possible ways depending on the individual. Not everyone gets the kind of lupus that attacks the organs. Lupus can attack just the joints, or even just the skin. Some people have to work to stay on top of it, while some go into remission and experience flares only every few years. I had my first and only lupus outbreak at age 33, and I am 40 now. I was pretty scared when I was first diagnosed.

 

[Junkmanme]

21 yrs ago, the doctors suspected that I had LUPUS.

Tweren't so.

I had, and still have, DERMATOMYOSITIS.

To my understanding, both are Immune System malfunctions.

ALWAYS get more than a couple opinions.......and don't tell them what the other doctors have said OR that you have EVEN SEEN "other doctors". That "doctor fraternity" makes my "college fraternity" look like beginners! (it's a doctor "cover-your-ass" deal brought on by our stupid court system and too many malpractice liability suits!)

just my opinion,
Bruce

 

[ginnie5]

my sister has it. There are two types of lupus...one that affects the skin (remember Pam on Dallas? she has that one I can't remember her real name though) and the other one that affects the organs. that's the one my sister has. She was in her 20's when she first started getting sick and it took them about 2-3 years to come up with a diagnosis. In that time she almost died several times. she's had 3 strokes, lost her ovaries and uterus, had fluid around her heart, one kidney is now smaller, and just too much else to list. She is on tons of meds for the rest of her life. That being said hers has been under control almost 11 years (September). They've had to change meds a few times to keep it that way. Overall she has a pretty good quality of life. She's partially paralyzed from the strokes though and her speech and talking are affected.

 

[cjb]

We have had Lupus diagnosis in my fam (my dad and one sis). This disease is very difficult to diagnose. My sis has gone for years thinking she had it and found out that she does not.

Get more then one opinion before you start any kind of treatement. Also, the symptoms and prognosis varies - much like M.S., another autoimmune issue.

I will be praying that they find something more simple or, if someone confirms the diagnosis, that he will be a-symptomatic.

My prayers are with your son.

 

[matt_man]

I have had Lupus for 10 years, I will be 28 in a couple of weeks.

Just a high white blood cell count is not indicative of having Lupus. An Anti-nucleic antibody titer (ANA) and sedimentation rate (ESR) will more accurately be associated with Lupus. A high ESR will show that there is inflammation in the body, ANA will show high levels of anti-body. My ESR is consistently 2X the normal during remissions and even higher during flares, I don't recall my ANA titer.

Doctor's also diagnose based on symptoms. There are 11 symptoms associated with lupus and if you exhibit at least 4 and show positive ANA titer, other blood tests, that is when diagnosis should take place.

Symptoms:

Facial Rash
Fatigue
Nose sores & Mouth Sores
joint pain - particularly upon waking up in morning and mostly localized in legs.
unusual loss of hair
unexplained fever
pleurisy
sensitivity to sun
Raynaud's Phenomenon - deals with circulation in fingers
Kidney function issues
Swollen glands

There are other problems that can be associated with lupus but are not necessarily used for diagnosis.

I would have his primary care doctor refer him to a rheumatologist which specializes in auto-immune type disorders. Treatments are limited, with high doses of steroids in order to suppress the immune system being the most common.

It's not the end of the world, although I thought it was for me at first. The thought of having something incurable is horrifying at first. As long as he has no life threatening involvement with his kidneys, it will be more of a lifestyle adjustment.

I can't do a lot of the things that I would like to do and I have had to find alternative ways of doing necessary things. I was very depressed for quite some time but I suffered, literally "suffered" for many years before doctors would finally try to figure out what was wrong. It took 4 years and 6 different doctors before someone would finally listen that something wasn't right with my body.

If you want to email me privately just send me a PM and I will give you my personal email address.

Rachel

 

[matt_man]

I just noticed that you are also in Southern MO and I could recommend a specialist in Springfield that I go to and he is the best.

Rachel

 

[Junkmanme]

Matt Man (Rachel)

Do you find that "stress" tends to bring on a "flare-up"? It does with my Auto-Immune disfunction.

just wondering about the similarities...... :baby04:
bruce
P.S. I have (and had) more than 4 of the diagnostic items you mentioned. However, I do NOT have "LUPUS".

 

[big rockpile]

Well everyonesays get a second opinion.But he is on Medicare :shrug: because of Mental problems.

big rockpile

 

[JBourne76]

I've been diagnosed with Lupus for 18 years. I was diagnosed when I was 19 years old.

There is a list of symptoms and if you have X number of these symptoms, you probably have Lupus. I'm sorry, I can't remember how many of the symptoms you have to have to meet the requirements.

As far as I know, Lupus is manageable. Rheumatologists are the doctors who usually help you manage your illness.

Be prepared to take Prednisone. Prednisone SUCKS...but it is real effective for treating Lupus. I don't find that stress triggers my flareups...mine seem to be completely random!

Stay out of the sun. If you don't stay out of the sun wear some serious sunscreen. Allegedly, 15 SPF is fine for most peeps. I use 45 to 50 SPF...don't wanna take chances.

There are 2 different types of Lupus, Systemic Lupus Erythematosis which affects the connective tissues of your body (which I have) and Discoid Lupus which affects the skin, usually on the face, in the form of a rash.

Systemic Lupus Erthematosis can affect any organ in the body. It is annoying in the extreme. It can manifest itself as arthritis or something much more annoying.

I had serious blood issues. My white cells were attacking my red blood cells. I loathe prednisone, but it saved my life more than once.

Oddly enough, I used to have arthritis issues fairly often after I was diagnosed, but for the last several years I haven't had any arthritis issues. I am grateful for that.

Lupus...it's a serious pain in the butt, but it is manageable, as far as I know.

BTW, as an infant, I was tested for leukemia because of my swollen glands. When I was in the hospital, before they diangnosed me, they did a bone marrow biopsy.

Pleurisy? I've had it more than once, especially during wet, rainy, cold winters. Hated it! Made sleeping way difficult.

I've had 2 deep vein thromboses, 1 pulmonary embolism, and a really obnoxious full body arthritis attack.

Thankfully, I'm still here...and I'm a SUPER BAD patient. My doctor yells at me. He should.