Re: RESEARCH - Rituximab safe and effective for SLE

[Guest guest]

Well tolerated!? The # of people who got horribly ill and died was way too

high!!!!

Yikes!!!

Candace

Sent from my iPhone

On Jun 4, 2010, at 11:48 AM,

<Rheumatoid.Arthritis.Support@...> wrote:

Rituximab Safe and Effective for Systemic Lupus Erythematosus

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[Guest guest]

Hi, Candace. I know it sounds disturbing, but these might be

acceptable results for the group in question. There are very few

options available with which to treat severe systemic lupus.

First of all, many of the lupus patients in this group were very ill

to begin with. 43% of the SLE patients were described as having high

or very high disease activity at baseline.

Also, in the abstract it is stated that of the five patients who died,

3 (2.2%) died of severe infection and 2 (1.5%) died of " refractory

autoimmune disease. " This might not be unexpected in a group of this

size with these characteristics.

http://www.ncbi.nlm.nih.gov/pubmed/20506527

Not an MD

On Sun, Jun 6, 2010 at 4:29 AM, Candace Podratz

<candaceandbrock@...> wrote:

> Well tolerated!? The # of people who got horribly ill and died was way too

high!!!!

>

> Yikes!!!

>

> Candace

[Guest guest]

That's true... Just seems scary. They haven't come out with any new lupus drugs

in over 50 years. Nothing seems to help it much.

That's what I have and they can't even get my joint inflammation under control.

: (

Aah maybe some day a miracle cure will be discovered. I can dream!

Candace

Sent from my iPhone

On Jun 6, 2010, at 9:01 AM, <Rheumatoid.Arthritis.Support@...>

wrote:

Hi, Candace. I know it sounds disturbing, but these might be

acceptable results for the group in question. There are very few

options available with which to treat severe systemic lupus.

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..

[Guest guest]

Hi Candace,

Just another input about Rituximab.

It is now part of the gold standard treatment for patients with lymphoma for

several years now. My mother had lymphoma and was treated with Rituximab. The

risks also scared us 5 years ago, but that it usually on the first infusion.

Even then the doctors and hospitals are already very familiar with the possible

allergic reactions and have already 'mastered' the art of giving it very very

slow, with pre-meds, that the risks now are probably very small.

Rituximab trains the immune system in recognizing the real enemy, and has made

so much success in treating lymphomas.

Hope this helps.

Regards,

Rose

From: Candace Podratz

Sent: Sunday, June 06, 2010 4:21 PM

Subject: Re: [ ] RESEARCH - Rituximab safe and effective for SLE

That's true... Just seems scary. They haven't come out with any new lupus drugs

in over 50 years. Nothing seems to help it much.

That's what I have and they can't even get my joint inflammation under control.

: (

Aah maybe some day a miracle cure will be discovered. I can dream!

Candace

[Guest guest]

Both my son and myself have been ill with an autoimmune disease, systemic

Polyarteritis Nodosa (PAN), for over 26.5 years. This disease is a vasculitis

which is much like severe systemic lupus. We were finally treated with Rituximab

in March and April of 2010. Although we both have suffered from some infections

we are considered to be in complete remission from the PAN now. Although we may

need retreatment sometime in the future it is a great gift to feel remission for

the first time in all these years.

Doctors have explained to me that the lupus study design was not the greatest.

Rituximab actually is thought to be the " go to " drug for many systemic

autoimmune diseases (including lupus), with some of the highest success rates

and lowest incidences of side effects of any of the other drugs.

Both my son and I might be dead by now if we had not received Rituximab. Just

before this therapy he incurred severe damage to his heart and survives on a

pacemaker, and I incurred severe damage to my pancreas and now have severe Type

I diabetes mellitus. Had either of us suffered any further organ damage it is

unlikely we would be here.

Maggie Leigh

>

> That's true... Just seems scary. They haven't come out with any new lupus

drugs in over 50 years. Nothing seems to help it much.

>

> That's what I have and they can't even get my joint inflammation under

control. : (

> Aah maybe some day a miracle cure will be discovered. I can dream!

>

> Candace

>

> Sent from my iPhone

>

> On Jun 6, 2010, at 9:01 AM, <Rheumatoid.Arthritis.Support@...>

wrote:

>

> Hi, Candace. I know it sounds disturbing, but these might be

> acceptable results for the group in question. There are very few

> options available with which to treat severe systemic lupus.

> Switch to: Text-Only, Daily Digest • Unsubscribe • Terms of Use

> .

>

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