BS: Lupus

Subject: BS: Lupus
From: Ebbie
Date: 30 Dec 11 - 03:28 PM

On ViriniaTam's thread 'So That's Why I Feel Like Crap!' I said: "In Oregon back in the 70s I too was treated for rheumatoid arthritis because the blood tests didn't come up with a clear diagnosis, and my arthritic symptoms were much the same as those of lupus which was suspected.

That year we started testing for lupus in February and it didn't test positive until June."

gnu suggested it might be of value to start a thread on the subject of lupus, and since I have since met or known of a number of other people who got that diagnosis, I agree.

I eventually got away with an extremely fortunate outcome. Some people I know have not been so lucky- a 16-year old boy in my sister's church died, and a woman I know has been battling it for more than 10 years. And losing ground.

In my case at age 31 I started with the infamous butterfly but for the next 10 years I had no other symptoms. When I was 41 my joints all over my body began a wicked ache and I had to go under medical care again. Because of the butterfly experience they of course suspected lupus but the tests were negative for four months- by that time I had reached the peak (depths?) of the symptoms and within another four months I was able to discontinue the medications I had been on for about the last year.

It wasn't fun.

Anybody else?

Subject: RE: BS: Lupus
From: Jack the Sailor
Date: 30 Dec 11 - 04:00 PM

I googled Lupus Butterfly... I had not heard of it before. Is that it?

Subject: RE: BS: Lupus
From: gnu
Date: 30 Dec 11 - 06:44 PM

Ebbie... thanks for starting this thread.

Subject: RE: BS: Lupus
From: Richard Bridge
Date: 30 Dec 11 - 07:15 PM

I have a friend whose wife lives with lupus, but so far she manages OK.

Subject: RE: BS: Lupus
From: Crowhugger
Date: 30 Dec 11 - 07:49 PM

There might be some relevant info in this thread, with a number of posts by people with lupus.

Subject: RE: BS: Lupus
From: Ebbie
Date: 30 Dec 11 - 11:01 PM

That poor little girl! Yes, Jack the Sailor, that's the butterfly. Mine never got that large or that bright. We got it stopped just as it crossed the bridge of my nose. I don't know if it's always the same but mine started as a welt on my cheekbone just below my eye and crept silently and inexorably across my face.



Thanks for that link, Crowhugger. I evidently missed it the first time around.

Subject: RE: BS: Lupus
From: VirginiaTam
Date: 31 Dec 11 - 06:14 AM

All these autoimmune conditions.

A former colleague has Lupus. Evidently really bad case as she was often signed off from work. She put on about 3 stone in less than a year. She was on steroid treatment.

I have yet to be signed off with rheumatoid arthritis, though in last few months I was near it and have, since first diagnoses 6 years ago have developed Sjogrens. I've had hypothyroidism from age 18.

The medical research community really needs to get behind study of the human immune system. Too much money and attention is thrown at treating symptoms rather than causes.

I started looking at the autoimmune problem with my daughter Hilary when she was 14 and diagnosed with autoimmune liver disease and now has polyovarian cyst syndrome. Her older sister dies a few years later due to autoimmune adrenal dysfunction. Hypothyroidism in both girls.

I am sharing link to American Autoimmune Related Diseases Association at it appears to be the only group working toward cause of AI conditions and not merely the symptoms.

AARDA

The American Autoimmune Related Diseases Association, Inc. (AARDA), was founded in 1991. AARDA's mission is the eradication of autoimmune diseases and the alleviation of the suffering and socioeconomic impact of autoimmunity through initiating, fostering, and facilitating collaboration in research, education, advocacy and patient services in an effective, ethical, and efficient manner.

They also have a facebook page which I joined.

Subject: RE: BS: Lupus
From: Ebbie
Date: 31 Dec 11 - 01:24 PM

"autoimmune adrenal dysfunction" - interesting. I remember when I was under treatment for lupus I got twice-weekly shots for the adrenal function; they said that either the disease or the treatment (I don't remember which) disabled the adrenal glands.

Subject: RE: BS: Lupus
From: gnu
Date: 31 Dec 11 - 02:07 PM

Hmmmm... is it accompanied by easy bruising? cuts not healing easily?

Subject: RE: BS: Lupus
From: GUEST
Date: 31 Dec 11 - 02:18 PM

it's not lupus

Subject: RE: BS: Lupus
From: Crowhugger
Date: 31 Dec 11 - 04:27 PM

Ebbie, were you on steroids at the time of those 2x weekly shots? Steroids suppress adrenal function for up to a year after going off them.

Subject: RE: BS: Lupus
From: gnu
Date: 31 Dec 11 - 05:25 PM

guest... I don't understand your post.

Subject: RE: BS: Lupus
From: gnu
Date: 06 Jan 12 - 05:45 PM

Freeresh

Subject: RE: BS: Lupus
From: bobad
Date: 06 Jan 12 - 06:50 PM

"The medical research community really needs to get behind study of the human immune system. Too much money and attention is thrown at treating symptoms rather than causes."

My life's work was spent doing research in the field of immunology and no one that I knew working in the field was looking at treating symptoms, rather they were, for the most part, studying the nature and function of the immune system which is very complex and multi-faceted -- much has been learned but there remains much to be learned about it.

Subject: RE: BS: Lupus
From: ranger1
Date: 06 Jan 12 - 06:56 PM

Gnu, guest's post was a quote from the TV show House.

My first step-mom had Rheumatoid Arthritis and the side effects from the meds she was on were eventually what killed her. I know someone else who is treating it holistically and I would never have known that she had RA.

Subject: RE: BS: Lupus
From: ranger1
Date: 06 Jan 12 - 06:56 PM

Gnu, guest's post was a quote from the TV show House.

My first step-mom had Rheumatoid Arthritis and the side effects from the meds she was on were eventually what killed her. I know someone else who is treating it holistically and I would never have known that she had RA.

Subject: RE: BS: Lupus
From: Ebbie
Date: 07 Jan 12 - 01:39 PM

Crowhugger, I was on prednisone, ACTH and another drug which I have forgotten. And by the end I was taking 22 or 24 aspirin per day...

Subject: RE: BS: Lupus
From: Amos
Date: 07 Jan 12 - 03:17 PM

Cannabis, juiced and not heated, has been effective in reducing the symptoms of lupus, but I do not know in how large a population.

Note this is not marijuana as commonly smoked but the green plant, minus the hemp fiber, juiced raw.

A.

Subject: RE: BS: Lupus
From: VirginiaTam
Date: 08 Jan 12 - 06:45 AM

Bobad - I applaud your life's work, but the fact remains more money goes to developing medicines to treat symptoms than goes to rooting out causes.
Cures don't make the pharmaceutical companies or the medical industry as much money as keeping people unwell enough to need continued treatment.

@ Ranger1 I've long suspected that the methotrexate (known to be highly toxic) being used to treat my RA is slowly killing me. I get fussed at by my consultant when I go off the treatment due to feeling poisoned, my blood pressure going up and return of angina pain. She just states that these are not recorded side effects of methotrexate. I tell her to check my record and see how the BP returns to normal when I am not taking it. But then she ignored an alert on my record that indicated my liver enzymes were high, which should have prompted her to call me and tell me to stop taking the metho. It was a registrar at the hospital who noticed and who was surprised I wasn't notified. What the heck was that about?

Subject: RE: BS: Lupus
From: ranger1
Date: 08 Jan 12 - 12:26 PM

VA - It was liver failure that did my step-mum in. I honestly don't know what she was on for meds, though. Gail died in 1995, so I'm sure that some of the meds used to treat RA have changed since then.