male, age 54

That was five weeks ago.

Now, by doing research, knowing that my high blood pressure owes mostly to a nephritis caused by the immune system out of order,

and knowing that =stress= of any sort, even the prospect of my going out for a social evening, is enough to trigger any and all symptoms, but usually it is the rash:

my face may be clear and handsome, even. But by one half hour before leaving the house: rash.

Hmmm. What do you think that I've found that =seems so far= to tame my SLE?

Think, doctor-readers. I found a means to extend my life for a while, at least,
without prednisone, endless doctor visits (the stress of which would harm me anyway).

I won't ever take prednisone. It's rotten, rotting stuff. I won't take cytotoxins.
I'd sooner just die of natural causes than drug-induced side effects.

I think I have a fix, suitable, perhaps, only for myself, the patient who thinks
he is not a fool for being his own doctor. Feel free to disagree.

More later. First, please read tell me what you think I've found to fix me up just fine.

Hint: it is a common pill, prescription, old school stuff.

How terrible that you have been treated this way. This rash that is on your face, is it painful or itch and how long does it last? Is it just heat that brings it on?

You lost insurance coverage because your doctors office filed a claim to them in error?

Do you have documentation that you were given a self pay rate and you paid in full but they filed your claim anyway? If so, you might have a case against them as if it was not for their error you would still have health insurance. Also did your insurance company pay a portion of this claim after you paid it in full?

I am experienced in the billing / analyzing, etc of medical bills and what your doctors office did is wrong on so many levels and they should be held accountable for their mistake and now your personal health is paying for it.

~Zig

Thanks for the concern. I don't want to digress from the topic, this =hope= that I may have stumbled on a simple way to keep my lupus in remission.

But just to answer your question: I was always self employed, a piano technician. The episode outlined was too long ago, about 1994. I wrote it off as a final lesson about doctors and hospitals v. self-paying suckers.
Such health insurance policies as are sold to individuals are almost a joke.
That policy had a high deductable, higher than the doctor's $600 fee to diagnose what I knew I had: a small, bleeding stomach ulcer. The ulcer bled because I had done a long and lonely night's work to prep two concert pianos for a competition. I worked twelve hours straight, through the night, without real worry that I'd not have the pianos ready. Emotional stress. No food in my belly. Stomach ached badly. Next bowel movement was blackened. Food, when I was able to next get a meal, quelled the pain. No more pain. Normal stool.
A friend said: but you should go see a doctor! I know the best specialist in Miami.
And he was famed and he was personable and he said, well, OK. So just to be sure, let's do a gastroscopy to rule out any chance of its being something malignant.

How much will all this cost? "$600" . What he did not say, and I did not want a gastroscope procedure, was that the hospital where he does these things, charges another $1200 dollars for the use of an exam room. The procedure was uneventful and unpleasant. "Yep. It's a tiny ulcer, healed OK".
I paid his $600 in advance, and then the hospital sent me their (surprise!) bill for $1,200. And the doctor gave me a prescription: for tagamet.

Even veterinarians KNOW that common ulcers are caused by helicobacter pylori, and so a REAL cure/future prevention can only be gained by a course of antibiotic therapy.
I did not get that option. I got tagamet. I did not need nor use the tagamet.
I simply took care to never run my belly on empty whilst working under duress.
No ulcer pain ever touches me if I use common sense.

Private insurers are no good. Typical sales pitch of my experience: "We will never cancel your policy unless we decide to discontinue all such policies in your state of residence. This is their game: they sell you a policy and you may keep it for maybe two years or three, paying absurdly cosly premiums for very little actual coverage, such as "surgical fees and hospitalization" but NOT for regular check ups or doctor visits for pre-emptive care. It was always that way for me. I'd been insured and then dropped four times over the years by that shell game of private insurers. The GI applied for payment against my insurer.
At renewal time, my renewal was denied, perfectly legally: they, again, were ceasing to write that particular type of policy in Florida. A new policy language,
just slightly different in scope, allows the body of insurees to be shitcanned.
In this way, insurers do not amass a cadre of long-term clients, all of whom pose ever greater risk of chronic illness.
I call it the three year cull of cultivated fools: the individuals wanting health care coverage.

---
now, back to the question. I had had it with the famed GI medicine man, doing a high tech procedure, not for my benefit (the one in one thousand chance that I had some malignancy, but to cover his ass(ets) in case it was not what it seemed to be: a duck. IF it quacks like a duck, it is almost always a duck and not a wolf.

Medicos today do unnecessary procedures, often to protect themselves from crazy patients who, if not fully diagnosed, not rightly diagnosed, will try to sue them for all they have.

I'm not like that. My paternal grandfather was one of the first-ever GI surgeons and specialists in that field. I did not know him; he died a decade before my birth. But I know he was an old-school, common sense physician, a great one,
who treated the patient and did not think to cause unneeded work or worry, just to "rule out" the rare, rare other possibilities.

Back to my self treatment now: WHAT do you doctor readers here THINK I've found that SEEMS to be giving me nearly complete remission? It's a pill, prescription, old school stuff.

I'm not into scented candles, aromatherapy or prayers or sympathy.

I do like to put (haughty) doctors in their places: remind them to serve the patient by using common sense and with an ear listening for the harmless sounds of the usual duck.

It's almost always a duck in simple cases, and not anything more foul.

It's unfortunate that staff fails to tell their patients that they will get a bill for the surgeon's fee, surgery room, anesthesia and other services that may be provided like radiology, pathology. All have their hands in the cookie jar.

After personal years of fustration myself I found this book: Empowering Your Health by Dr. Asa Andrew. I could not put it down until I read it all. It is all about taking back your life as things that you put into your body can cause harm and inflammation in some people. Lupus is in the inflammation dept, so-to-speak.

Chapter 13 is awesome...it is a list (large list) of foods that are approved to eat which do not cause inflammation....stick to it for 4 weeks and your pain may decrease. I don't have Lupus but years ago was given a dx of Fibromyalgia which is caused by inflammation...within 2 weeks of this diet my pain went from a terrible 10 to a pleasant 0. However I am learning what non-approved foods cause me pain...so I stay clear of those culprits. The book is more than about foods, it's about other stuff...from tap water, deodorant, etc...

He is not a quack...he is a real physician who believes that doctors need to treat the illness and not the symptoms if at all possible. Instead of giving a person a pill for high blood pressure, find out what is causing it...too much salty foods? If so, change the diet.

His office is in Nashville, TN but has affiliates across the country and has a sydicated talk show. Google his name and you'll find his website.

Best Wishes,

~Zig

Thank you, Zig. I will look into that. I eat a low sodium diet. I eat simple foods that agree with me. Some foods (restaurant meals) will send me home feeling dreadful.

But now I have a pill, a magic pill. It is too soon and premature to know whether it's going to be my long term salvation.

But so far, so excellent. I feel like my normal self again.

DOCTORS, you highly trained geniuses, what do you think that pill would be?
I found it on my own, noted the instant results, and =only then= did web searches and found (nearly hidden) mentions of its use and
utility, for both some cases of lupus, and for some cases of spike-episodic high blood pressure.

I am quite at ease. To think, I never finished high school.
Physician, tell what pill I've found and I'll crow you some praises to the sky,

sincerely,

"Dr" Reid (as if, but maybe...)

male, age 54, broke but living under a roof only due to the charity of another



BUT I HAVE FOUND A FIX (so it seems)

Is there a virtual doctor in the house to affirm or deny the seemingly magic solution I spoke about in posts above?

WHAT pill do you think I discovered? I discovered it on my own.
Then I found vague references to this drug on the net.

My face is no longer red.
My joints are no longer inflamed; only arthritic-stiff in the mornings.
My blood pressure is within safe limits.
I sleep well.
I look great for my age.
I am looking forward, not backward.

What say you? What is the "magic" pill I've found, all on my own?
This is a medical test, for once; a test of you trained physicians.
I am not trolling. I'm challenging you to say the right things.
You all have it in you to help the helpless.
So do I.

Faces of myself from all his ages:

http://www.poetrycritical.net/~netskyIam/
forget looking at the dreadful poetry list I have there.
The link merely shows what a male living with lupus may look like.
AM SURE I've had "lupus" for nearly most of my adult life.
I happen to be lucky. I 'age' externally, very slowly. I am not vain,
I just want full disclosure. ON A GOOD DAY, I look just about like that topmost picture of two years ago.
At age 34, I looked like a 22 year old. But I had early signs of lupus even then.
This natural condition can go very slowly, or fulminate. I've been lucky by chance,
that it has been very slow indeed. Lupus is difficult to diagnose until it is quite advanced.
It can be so subtle that even the doctor or the "afflicted" can have no clear idea until after many years.
At age 34, I was truly prime. But I had early signs of lupus then: tendency toward great fatigue for no reason. Classic malar rash, once in a while, on either side of the nose.
But the doctors then merely prescribed topical cortisone cream, which has no effect on the rash; neither did Aristocort a much more potent topical.
Yes, even at age 18, early symptoms were present: a mild but often re-occuring of the malar rash. A Navy doctor gave me my first tube of hydrocortisone ointment at that time.
It did nothing, I found out then. I lived and enjoyed an active life with no medical care to speak about.
Only in the past four years have I gotten much worse. And a year ago I had it pegged: lupus. And this past year the symptoms have grown a great deal more pronounced.
This is the natural course of just one person's experience. ALL others will be much different.
This odd condition, manifesting in subtly different ways, as different in each case, as one snowflake from another, make lupus one of the most intriguing and challenging natural, incurable, mysterious, intractable, inexorable of human disorders.
Will the master key ever be found? Is there a master lock? I don't know.
I only know myself. And I am not depressed or unhappy, ever. Luck of my inborn nature.
See the faces of a slow fizzler. But for gosh sake, don't read my poetry list. It's all crap, quite truly. It's just an outlet for a housebound fellow. The pictures, show, though, a story.

Just today, my mate of 25.5 years noted (because I had a bit of rash again),
"But Reid, you've always tended to get that red face." True, but it was always before, years ago mostly just on either side of the bridge of the nose. Now it may be that, or, if very fresh like the image above shows (that's a rash less than fifteen minutes existence, the whole, nearly, of the face will bloom red, and perhaps the more classic malar rash (butterfly) not hardly at all.
The skin, after one of these rashes, peels and flakes as if dandruff, indefinitely.
The scalp has discoid patches of hyper-thick skin which can be picked off every day, as do the ear lobes, behind the ears, in the outer ear canal, the face.
It's like a factory of shedding skin, after any sort of rash, mild or severe.

The lately-adopted course of the (not yet disclosed) prescription drug,
has continued to keep my blood pressure low, and nearly cleared my face of peeling, surplussed skin. I am less like Krusty the Klown every day;
I only sound like him now

This will be no panacea and it does mean a minor sort of drug dependence.

fact of my former, un-medicated self: I cannot take much in the way of exercise without flaring lupus symptoms such as extreme fatigue (can't cut the small yard's grass with the electric mower any more.
Can't be in the sunshine at all, more than mere minutes. Can't enter social situations of almost any kind without soon-resulting rash and extreme fatigue. Can't do brain work (writing online, my hobby) without elevating BP to abnormal, sustained highs.

Patient-self is 54, muscular/lean, low(er) than average sodium intake, of stable mind and time-stable physiology (my weight has not crept upward over the years and muscle mass is fairly near what it has always been.

Stress is my body's great trigger. Brain activity seems to be key. Anxiety? I have none, and no tendency toward depression or any of that. Brain activity is my key: it increases my BP from what may be a normal-enough 140/80, up to a minimum of about 180 over nearly 100. At a systolic of 180 is where and when I "feel" my BP is high (full head sensation. Elevated diastolic does not cause patient-sensible feelings (has been recorded as high as 115.

Since beginning full time diazepan (generic Valium, for therapy) two weeks ago, my BP remains in the 140/80 territory or even well- below (as when sleeping, of course).
I can do fully-awake brain work (creative writing) without spiking the BP.
Lupus symptoms of extreme fatigue and joint pain are now nearly if not absolutey absent.
This latter effect may be co-incidental, a fluke, for lupus symptoms commonly go remissive for unknown reasons.

However, for some months now, I had had NO remission of lupus symptoms. My rash was more and more frequent. My BP was steadily spiking, more often. My joints were always giving pain and generally I walked with a limp.

I am on no other medication nor under medical supervision. I cannot know just how my kidneys are performing, but they seem to be working "well enough".

The only real change in my life has been 20mg diazepan per 24hrs, apportioned as four 5mg doses (that is, 5mg every six hours).

The side effects on myself at this rate: some noticeable slowing of physical reflex speed, but non intellectual impairment. MUCH improved sleep quality than before.
Drowsy during the waking hours? Yes, if I'm not involved in active brain work such as my writing. Music puts me to sleep, same as always it has (classical music).

Increased intake of diazepan (say, a full 10mg tablet) will produce even lower BP and a notable, leaden quality to the feel of the body, and surely more tendency to drowse. I would not drive a car with such a does. NONE of the old, long-familiar symptoms of activated autoimmune disease at present exist: no discoid, thick, scaling patches of hyperkeratotic (sp?) skin; no facial redness, no redness on the upper chest.

Downsides: it is understood that continued use of diazepam will lead to a physical dependency and some withdrawal effects were it to be abruptly discontinued.
On the good side, despite its sedative effects, the diazepan causes no "narcotic"; no euphoria, and no impairment of this patient's intellectual abilities. I can write. I can do complex mechanical tasks. I DO FIND that if sedentary, which has always been my best non-drugged activity of choice, that diazepan therapy tends to make me fall asleep, say, whilst watching even a (menally engaging movie).

For the short term, at least diazepam is proving to give me a new lease on life.
OF COURSE I should be under the supervision of an endocrinologist, at the least.
OF COURSE, I should get a full work-up and learn just how damaged my kidneys and arterioles are, in geneal.
OF COURSE I have no access to medical professionals because I am American, have no ability to buy coverage at any price and choose to NOT enter the charity health care system for reasons of my own: loss of control waiting, waiing, waiting in crowded, brightly lit patient pitstop rooms, all of which would tend to trigger SLE activity.
I do no work, cannot work. I laze in a horizonal chair for most all the day, and even sleep in this chair (a Lafuma) chair, instead of a bed, due to a bad back of years' standing.

SUMMARY: diazepan seems to put my SLE into virtually complete remission.
Diazepam, if used at timed intervals, keeps my BP within safe limits.
I take no other meds than a daily aspirin and naproxen.

I have not re-read nor proofed this essay. It will contain typos and other minor errors.
I am not and never will be on prednisone nor high-tech health care techniques, nor use cytotoxins. This is MY personal choice only and NOT a suggestion for others, under care, or needing care, to ape what I am currently doing. EVERY lupus patient has different problems, rate of progressive deterioration.

Diazepan is not a systemic slow poison, as are the two or three most commonly used, official-line meds. I have every reason to think that I've had SLE, more or less always active, for at least 15 years; and more like 30 years, if I count malar rash as indicative; for the rash, in relatively minor form, was present even at my age of eighteen. It was only 15 years ago or so, that chronic, easily-provoked extreme fatigue became my companion, and only a few years ago that joint pain became pronounced, and joint deformation, severe (some fingers and all toes).

The hope here is, that diazepan will for some time to come, not only give relief, but slow the damage to arteries and organs (kidneys in particular), which, non-treatment was not helping, despite my withdrawal from active social life since many years ago.

Valium. Diazepan, same thing. Cheap, relatively harmless (I know ALL about the downsides, as published, implications of drugs like this, in diminished kidney function).

=I can afford diazepan therapy=. I cannot afford specialists' hapless, "let's try this next", MD treatments.

I am in no pain and I'm not fogged over by any narcotics. Again, this is a once-through essay, not proof-read for errors, cogency, nor any attempt at brevity. Judge then, for yourself, and then ask/show this to your MD, to learn if it may be of any interest to yourself, and of any interest to your MD to allow you to try.

There will be no medical studies for diazepan in ameliorating SLE.
Why? There's no money in selling generics, or in reducing the traffic-profit pattern for MDs and drug pushers.

So far as (little) I know, no MDs prescribe diazepan as a primary treatment, or even as a medical (as opposed to palliative) treatment for SLE. Yet it DOES reduce elevated BP very well indeed for myself, and it DOES seem to put my SLE into remission and it DOES make my body feel "slower" (not good, that), but it DOES NOT narcotize my brain.
And if I can't think well enough to write clearly enough, then that's the finish of my interest in pressing onward.

Thank you for your patience if you've waded through this essay, this far.

DIAZEPAN is suggested to suggest TO your MD, for YOU to try with caution,
and without high expectations for miracle results, unless your name is,

yours sincerely,

Reid Welch
Miami, Fl.

Hi Reid,
I hope that it is what it seems to you, but I think that two weeks is too short a time frame for any doctor to take seriously.
I have just been diagnosed with a 'connective tissue disease, possibly lupus' and have been offered plaquenil.
I also have fibromyalgia, and took the decision to become physically dependant on strong opiates, which do take the very edge of my pain.
I am hoping that the plaquenil will help with my joint pain and slow down disease in general, if I choose to take it. I can't see that there is an alternative for me to be honest. I cannot see any doctor in the uk prescribing diazepam just to 'suck it and see', but I do hope that it continues to work for you, and would be interested in how you get on after a few months.
Also having had friends that took valium in our younger days, I can tell you that it is not a 'minor sort of drug dependence', it is notably one of the harder drugs to withdraw from. But IMO with a chronic illness that does not become such an issue, if it works especially.

I am interested in why you started to take it in the first place? I assume also that you are buying the Diazepam on the black market, or can you buy it over the counter where you are? (as you said you are not under medical supervision)

I am very lucky to be living in the UK where we get medical treatment regardless of our financial status. (People constantly moan about it of course) I wish some of them would think of what people in the US have to go through to get medical treatment.

Good Luck.
Sue
Scotland, UK

Yes, two weeks is NO proof, but only a POSSIBLE clue that my current remission is in part or whole, due to the diazepan.

What is indisputable, though: my blood pressure has been running dangerously high for months.
Two weeks ago it was typically, 196 over 97, more or less always like that.

That's when I got really worried, and begged a Valium (10mg) from my mate, who has a legal prescription. (ooo, I broke the law, jk)

The blood pressure, that immediate danger, instantly fell to a normal level.

Since then I have been taking the 5mg tablet doses at 6 hour intervals.
My blood pressure stays below 150/84 (at worst, and ususually, lower than that)

IF I skip a dose, and concurrently write (which activates the brain to full activity),
UP goes my blood pressure, to as high as nearly 200 over fully 113 (so-recorded).

Co-incidentally, during this BP reduction regimen, my lupus has gone into practically full remission.

Have just written a note with link to this thread, to Dr. Gary Glick, copy and paste from his page, QUOTE:


Gary D. Glick

Werner E. Bachmann Collegiate Professor of Chemistry
Professor of Biological Chemistry, UM Medical School

Ph.D., Columbia University, Postdoctoral Fellow, Harvard University

Organic Chemistry and Chemical Biology

----end quote---

So, now a genuine researcher, who knows more about the chemistry and the prospects for this sort of thing, may read this (((premature disclosure))) of what may not be useful to anyone but to myself.

I feel that it's important to raise NO false hopes in the community.
I do think it's worthwhile to publish a "heads up, this may lead to something".

That is all. And I am not in pain. I am one of the lucky ones who does not suffer so many of the awful complications associated with lupus.

Anecdote: two days ago I met a young black female police officer. We were just chatting.
I mentioned, because I want to put a public face on lupus, particularly for the relatively rare males with this condition, "I have SLE". She brightened, "So does my first cousin! She was diagnosed at 18. She is 46 now."

What does she take? "Well, I don't know it all, but she takes Vicodin for her pain".

I am not needing synthetic opiates, thank my luck for that.
IF valium, generic, knocks down my eventually-fatal blood pressure, then I've already won the most important, short term battle.
IF valium, generic, also quiets down the SLE, well, that's extra icing on my cake.

I am a lucky man. I don't want sympathy, none of us wants sympathy.
We only want empathy and open minded, bold, wise, physicians who can bear up to our
needs to be understood, treated, and given back lives as nearly normal as possible.

Thank you, Sue.

LINK:
http://www.umich.edu/~michchem/faculty/gli ck/
tiny, excerpted portion. It is not doubletalk, It is tech-talk;
there is a difference, and this is for a good difference:
{QUOTE}Anti-DNA autoantibodies are a hallmark of the autoimmune disorde
systemic lupus erythematosus, and mediate a kidney inflammation
that can be fatal...{/QUOTE}

Hi Reid
I agree by the way that it is a great idea to post and let others know about anything that may help, I was just saying that a doctor was unlikely to listen at this stage.
I was also curious about what led you to the valium in the first place but of course it was the blood pressure. Other questions I asked, I have since realised, were not really appropiate considering you use your real name here....lol
I do think it's wonderful that you have found something that is working for you, long may it continue.
I would be very interested if you hear back from Dr Glick, what he may have to say on the subject, I hope you will post here.
I like how you chose your username...

"Sweet Sue" is the famed title of an old American pop tune.
It can be found on the net.

I post with my real name to put a real face on this disorder.
I refuse to term these autoimmune disorders, "diseases".
I think of typhus, flu, smallpox, and the lot, as disease: curable or self-resolving, some of them

Autoimmune disorders remain, all of them, incurable, but treatable.

When we google "lupus rash" or "malar rash", we get returns of thumbnail images
mostly with the eyes and names blanked out, as if this disorder were some shame or to be anonymous;
it's the patient's choice.

I choose to put my name and face to the public.
The picture up above is of a very fresh rash of just a few minutes duration.
I have, somewhere in my old computer's hard drive, a malar rash image of myself,
and it looks so dreadful, and I look like, ten years older, and as pitiful as a run-over alley cat.
IF I can ever find/recover that dreadful image, it will be posted here.

Dr. Glick and his team will in time read this thread.
They should not feel in any way obligated to comment.
In fact it might be best for them to just print and tuck these pages into files
or print the salient parts in textbooks (they have my permission: all my writing here is given to the public domain; just don't blank-bar over my eyes or name.

I've nothing to lose and much to gain: this (probably) temporary reprieve:
BP continues normal. NO joint pain. NO excess fatique. NO dopey mind.
NO narcotized brain. NO problems! No cure, but, no worries, either.
And NO doctor visits so far, though I sure would like to be non-invasively looked over,
ana test, kidney function and the like.

I read all day. Old books, medical journals, available free on the 'net (google book search) tell how, even back then, to diagnose lupus, quite reliably enough, without the high-cost, high tech tests used today.
Also, the treatment options, as so often noted, have not much advanced for fifty years.

HERE is where Dr. Glick's research team shines: they are young, open minded, smart, caring, and LOOKING at a relative derivative of valium/diazepan as a stopgap, a help, to save our kidneys from autoimmune destruction: the most common, final act of this disorder, unfortunately called "lupus". All it is is our autoimmune system,
gone willy-nilly-silly.


thanks Sue,

Reid

____

PS, and only to Sue, and NOT to be responded to:

this (bad) poet, a Yank,
he reads your words
and is charmed by their lilt,
so near, not far.

http://books.google.com/books?q=lupus& as_brr=1
list of old, free, medical texts mentioning lupus,
a disorder recognized for much more than a century.
YOU MUST find the box of "views" and select "full view" to see the
public domain, full text books and articles of long, long ago.
The others are "previews" of still-copyrighted texts and texts
available to medicos' eyes only.

I have no physician.

At least I can read. So much genuine info on the net.
Go for official sources that DO NOT sell nor promote:

http://psyweb.com/Drughtm/jsp/valium.jsp

Valium or its generic equivalent continue to give me better health every day.
That is, I feel better. Today, for the first time in months, I went out and did various errands.
Returned home, and did not feel worn out at all. That's just ME, my luck, and is no proof
that valium-type treatment has put my SLE into remission. But in remission it is.
My BP is a bit lower on average each day--now I can exercise: walk a half mile per night.
Exercise, instead of just laying all day in a zero-gravity chair, is known to help lower blood pressure.
Aerobic capacity gradually returns with mild and then moderate exercise.
I must be careful, though, to not push myself too hard.
It's possible, though I think unlikely, that all SLE symptoms have abated by themselves,
without the valium/generic treatment.

VALIUM is an addictive drug: physical and psychological dependence will develop.
IF kidney function is compromised already by my long-term SLE, then valium/generic
can be a problem. I SHOULD GET a urinalysis and blood work done to know how my kidneys are working.

Yet, I have no overt symptoms (none I can note) of kidney failure yet: normal urine appearance, normal bladder contents-time containment. I drink a normal and ample amount of water. I consider for myself, sugared drinks, but particularly, aspartame-sweetened drinks to be bad stuff for me.

I have increased daily dosage of valium/generic form to three 10mg tablets, per day, about eight hours apart.

I will, if not mentally or physically active, go drowsy at this relatively high dosage.
Yet, I can do my evening walk, and next day: no sore right knee. No lame hip.
No joint inflamations anywhere. No fatigue.

So far, so very good. My resting BP right now as I write: 120 over 83,
instead of what it was for months before the valium-generic: an average well over 140, as much as 196, and a diastolic of always well over 90.

This has been an interim report. I plan to become addicted, for good reason (better than the alternative) to this non-narcotic but addictive drug, because the other way was:
total, constant fatigue, very poor, short sleep periods, waking up feeling like fingers and toes had been run over by a truck. NONE of that any more.

I read here of new lupus-like officially diagnosed patients; most are female, of course.
Many seem to be in great, chronic all-my-muscles-hurt type pain. I don't have that trouble,
lucky-me. These officially treated patients are often (so I read) promptly given, aside from the usual work-ups, plaquenel (sp) and prednisone, and if in chronic pain: permanent prescriptions for synthetic opiates such as vicodin or hydrocodone type things.

Valium is, at least, non-narcotic. It is not a "happy pill" and though it -may not be a pain killer- per se, it has possibly put my SLE in remission. I no longer ache.
I have my life back again, within reason. But will I go out in the bright sun, or go take a jogging run? No way! Not for months, if ever. I do not care to test my luck.

Another update in another week, a short update. AND IF and when I should "flare" and be spiking blood pressure, or suffering SLE overt symptoms, you will read about that here first.

I am not a doctor. I am an uninsured, penniless person living large now, thanks to the =seeming= benefit of generic valium. AT THE LEAST, it has lowered my formerly high BP
to a safe, low-enough level. That alone would make this self-treatment and soon to be =certain= physical dependence on one dollar's worth of generic valium per day, worth while.

That's all for now. Thanks for following along the one-person medical study of no official status whatsoever.

Cheers,
Reid

PS: Got a buzz cut hair cut, one to last me for a while. It ain't flattering on a 54 year old,
but who cares? I feel wonderful. Picture of me last evening just home from the barber shop:

the happy camper, Reid. "He may be rash but he no longer gets rash."

(lolz) Any of you (predominately) ladies care to go dancing?
I'm rash, but no risk at all, except to your toes
http://www.youtube.com/watch?v=ONRnvoBXizY
(this is silly fun to improve your spirits, for mine are just fine!)

"netsky", that's me ten minutes ago.
Don't go drive a car.
Don't think your fingers, even, will work well: you will be clumsy.
The post cited below shows typos that cannot be edited away: it's inalterable, that post.
Valium is a depressant of co-ordination. It does not stupid-fy the brain, only the reflexes:
http://www.poetrycritical.net/forum/read/1 55706/2/

Update; I continue feeling well, in certainly full remission. It has been near a month now.

No pains, no fevers of unexplainable origins, such as I has some months back; the highest was 104.3F.

Will report here again in thirty days, or sooner if ANY lupus-like symptoms reoccur.
So far, so very, very good. 30 mg of generic valium daily, eight hour intervals.

I think I'll go and mow the lawn tomorrow and get the house cleaned up for company coming next week.

I think I'm up to full scale living again. No thanks to conventional treatments,either.

Good day to you all; may you all get a break as long and complete as mine.
Bp now averages at 125 over 75 instead of the former much higher numbers.

http://en.wikipedia.org/wiki/Diazepam

http://www.addictionsearch.com/treatment_a rticles/article/valium-abuse-and-addiction _29.html

-------Updates:

=I am SLE symptom-free. I remain on diazepam, only. NO PREDNISONE, etc.

=I finally DID go see an MD, an older MD who is a General Practitioner (they don't "make" GPs. or Internists, either, much any more.
He does not generally take on new patients, his being of retirement age.

I had been on generic valium for four weeks by that time of first visit to the GP, and was feeling and looking quite well.

"We'll do a complete physical exam",
which he did, for a nominal fee of just $500.

The blood work, which I would gladly share here if permitted,
shows an ANA of only 20. That means "negative" for SLE, folks!

But you know, I never had any other ANA test to establish a baseline.

Bottom line of the physical exam of five weeks ago?

"You're healthy. Other than your =claimed= history of SLE, and those deformed fingers and toes, well, I have not reason to call you an SLE
person....And that rash picture? =That= is not classic malar rash, and could be due to any number of other causes.

"However, you say that Valium has relieved all your alleged symptoms,
=and= that your reported high blood pressure
(it was normal during doctor visit) plummeted when you began with the Valium.


"OK, I will, because you have labial hypertension, grant you a prescription for one month's worth of diazepam,
but you do know it will be physically habit forming."

Me: "Yes. And I know too, that it gives me (i am a lucky one) no sense of euphoria, or any 'got to have more', or any of that.

But it will be physiologically addictive.
NOTE BENE: the thing is, diazempam IS STOPPING all SLE activity, for me, at least!

You see me today, 'healthy'.
I've been on the drug for something like two months now.


I am awfully out of aerobic shape, because I've been in bed for a year.
I went six months without hair cut, because I had not the stamina to leave the house for even that long.

But I soon will begin exercising, now that...


POINT: another month had gone by. The GP renewed my diazepam prescription for three months, of 100 in a month's bottle, 10mg tablets,
Take three 10s per day. Clumsy, extreme at first. Now it causes little to no clumsiness (tolerance growth, addiction for sure)

Do I have SLE? Not anymore.

Did I have SLE? Recap of my symptoms:
=and keep in mind, female readers=, that in males, SLE is slower in progression an generally more "gentle", until later in the the game, when the males symtoms snowball. In my case: hypertension was going through the roof. Kidneys, probably.

------
=Malar rash
(I have a doozy of a classic picture on the hard drive on an old (broken computer),
which I must retrieve and show to you all. It is so terrible,
though the image is from about two years ago, that you'd wonder:
Can this person still be alive???? It was that dreadful looking.

=Fevers of unexplainable origin, on successive days, same time each day,
but escalating in max temperature, like as this:
101, then it breaks.
Next day 102.6, then it broke after an hour or two, just like the day before.
Next morning: chills and fever: 103F.

The next and final day: same time, about 10 to 11 AM, chill. Two thermometers were used each time for accuracy.
Both agreed. The fever of the fourth morning rose to =104.3F=

And that was that.
No more fevers before or since then.
I was not sick with any flu or cold symptoms at all.

=FATIGUE: the major symptom, always; ever-worsening fatigue; starting some fifteen years ago, or even more
(so very slowly did all this come to be "part of my life).

Exercise of any sort, produced a kind of tiredness which is hard to describe. Sleep would not relive the fatigue, though I slept more anyway.

--- lot of texts, sorry! Continue?

I was a self employed piano technician with no insurance coverage and with no trust in MD specialists.

Gradually I gave up working. Every, simple, two hour tuning job would result in two days of "I'm so tired I can't get up" feeling.

So, by '98, I was no longer working, no income; for income, I siphoned my savings and sponged off my life partner.

=Two years ago. Getting ever worse, fatigue-wise.
Rash more and more present.
Peeling skin; sebhorrheic (sp!) dermatitis ever worse (but perhaps unrelated to SLE, per se.

Daily, thick disks of peel-able skin to be pulled and combed from the scalp.

Two index finger joints, one after the other, in rapid succession, terribly inflamed and then calcified in their swollen-looking condition.
Those two fingertips, the most used fingetips, work fine.
They are not "frozen". SLE "arthritis, classic.

=Blood pressure: For several months before stumbling upon valium,
my bp "felt" high. I did not want to learn the truth.

Finally I checked it out: always in the vicinity of 200/100 in afternoon,
and less when just awaking (more like 150/90).

I begged a friend for a single Valium tablet.
One hour later: 200/100 fell to 140/85 (I round off the numbers).
The next morning: NO MORE "my fingers and hands feel as if they were run over by a truck."

=Have been on diazepam therapy for about two months now.
Having been sedentary, living in a dark room, in a reclining Lafuma mesh chair,
by necessity, I had gotten to become as wek as a kitten....until...
diazepam therapy STOPPED =m=y SLE symptoms.

Q: might diazepam/Valium be of some help to you? I don't know.

Now, just yesterday, I decided to take a new step: get a bicycle, get into shape again

Yesterday I got an inexpensive cruiser-type bike ($200) and am going to rebuild my aerobic capacity bit by bit.


--- more text? oh sisters and brother, forgive my running on:

I FORGOT to mention, in the symptom list, the pre-Valium, ever-shifting limp-inducing come-then-go,
pains in either one hip or the other, or one knee or the other,
or in both knees at the same time.

I have no joint pain any more. I can jump and run (but I have not regained "wind" yet quite yet....but soon I shall!)

IMPORTANT:
I feel that I have stumbled upon MY OWN "magic cure" for MY particular SLE.
And it costs under $25 per month.
And it may, just possibly, be treatment partially or completely useful for YOU.

Ask your specialist? You know, the one who has you on prednisone full time and plaquenil (sp!), and other agents, like $**@*# Vicodin, a "get the -itch off my back" quick-fix for the harried MD.


Valium, generic, may do nothing for you. For me? For now? I HAVE MY LIFE BACK.
IT MAY BE A FLUKE, AN EXCEPTION, AND TEMPORARY.
I will report again in weeks or months to say if I've remained SLE free.
So far, so excellent.

And the doctors will not tell you about this "magic chance" drug. WHY?
-it does not create patients in waiting rooms?
-they don't read about recent research?
-some don't really care that prednisone has made you gain pounds, lose hair and begin to rot into goo from the inside out?
-it IS an addictive drug (though I get no pleasure from it) and if cut off, will produce symptoms of physical withdrawal.
YET MANY MDS give you sufferers Vicodin or other synthetic morpheates, which DO NOTHING for the condition, but only
give you pleasure/pain relief, and for them "gets the -itch off their backs"

I can hear you sufferers in my vivid imagination "Doctor, isn't there something else? I hurt all over!".

"Yes, OK. Try THIS: hydrocodone." : (


------


-----What I found out AFTER I began my diazepam therapy.
Google: valium lupus

Result page:
http://www.google.com/search?q=valium lup us&ie=utf-8&oe=utf-8&aq=t& rls=org.mozilla:en-US:official&client= firefox-a


----
THIS LONG POSTING was not proof read. I am on a stiff dose of diazepam.
It will contain typos and bad phrasing for a couple of other reaasons: I am dyslexic and semi-blind in eyesight, besides.

Closure: ask your Specialist if they have ever heard of anything about, or anyone who, gains SLE "cure", of any degree, from diazepam.
If the doctor says "NO". Then fire him or her. Go see a real doctor:
because it's all there online. Just google " valium lupus ".

----

....I bought a bicycle today, and man, girl, woman, I plan to ride it a great deal.

I am not a victim of any disease or condition (SLE is a condition).

MOST OF ALL: I am not a victim of the medical industry.

I get no SS benefits, no pension, no nothing.

Yet, later this month, if not sooner, I am going to go back to work,
doing something, anything, whatever my strength will allow
(piano tuning is out: no more customers, and too stressful, mentally).

No proof read fullly, and besides I cannot "bold" or underscore words here,
and so there are "shouted" words meant of emphasis normally done with fonting effects instead.


Good luck and best wishes for you.
For me? I'm on temporary or permanent vacation from SLE.

Reid