Re: Watch what you read.....

[Guest guest]

Kay wrote-- " .CORTICOSTEROIDS

Corticosteroids or steroids are strong anti-inflammatory medications

that cure numerous kinds of arthritis, including lupus and rheumatoid

arthritis. "

I'm not sure what your disagreement is except that steroids treat these

disorders, not cure them. They are safe when used with a doctor's supervision.

There are serious side effects but they are also life saving in some situations.

My life was saved by steroids when I had a blood disorder. My immune system was

destroying my platelets. So, yes, there are side effects. They do not cure

autoimmune disorders but can be life saving when needed. I was on low dose

steroids for about 10 years. Fortunately I've had no apparent side effects. I

have been off them for a few years.

Kay B

__II',_._,___

[Guest guest]

Hi Kay. Just curious about your blood disorder. Did you have TTP?

Thanks.......

[Guest guest]

I had ITP which is short for a long name--idiopathic thrombocytopenia. It

occurred following a bout of pneumonia and an intestinal infection that was

caused by all the antibiotics used to treat the pneumonia. Fortunately the ITP

has not reoccurred. I was lucky!!

Kay B

[Guest guest]

Just curious since I had TTP in 2004 that was possibly caused from taking

Enbrel. Unfortunately, due to the TTP I am no longer able to take any of the

" miracle " drugs for my RA, AS, etc. and am now suffering, but am too afraid to

try anything else that can affect blood counts.

Good luck to you and glad you are better.

Kay Braddock <KayBraddock@...> wrote:

I had ITP which is short for a long name--idiopathic thrombocytopenia.

It occurred following a bout of pneumonia and an intestinal infection that was

caused by all the antibiotics used to treat the pneumonia. Fortunately the ITP

has not reoccurred. I was lucky!!

Kay B

[Guest guest]

Hi Kay,

I was refering to CURE, I have no issues with steroids as I have

taken them in the past and my son who is asthmatic also is treated

with them.I was just disappointed that this article on a medical site

had misinformation. When we are early in these diseases and

disorders,one article that states a cure can hurt a lot of people. I

was told I would be in remmission by 4 or so months if I went on a

treatment plan, I did and now a year later I am not any better, I am

worse. I have been going to the DR every month or two months and

changed dosages, added meds like prednisone, etc. Well, I am not

better, I am at home, in pain with no income because I either

resigned or would be fired from my job for mistakes I made. All due

to this Reactive Arthritis and Fibromyalgia problems.

I want others to be very careful, and do their research, and I am so

happy that there is help here from other's who help each other. I

have learned so much from the members. I was told by my DR there is

NO CURE, just remmissions. That is why I was disappointed in a

medical site that stated otherwise.

Kay

[Guest guest]

Kay, I don't know which article you were referring to, however, there

are many sites that say " pharmacy center " and most of these sites do not have

anything to do with the medical community. They claim they are a " pharmacy

center " but are in reality a site that promotes different drugs or alternative

remedies and are trying to sell their wares. They usually have a disclaimer

at the bottom of their pages (or hidden somewhere within the site) that

prevents people from suing them for information written on their web sites. You

are

right that we have to be very careful of the info that we get from the

Internet.

I did a google search on the word " pharmacy center cure arthritis " and the

very first link that came up was a web site that claimed to be Pharmacy

Center.org with a decal saying " Pharmacies U.S. Licensed Physicians " and was an

online pharmacy that seems to sell drugs and alternatives and claims they will

give you a *free prescription* and even advises that you can open your own

pharmacy. They say their drugs are cheap....but I bet you pay through the nose

for these drugs...and you have no idea where they are coming from. (I feel we

can't even trust our legit pharmacies!anymore!)

I've heard that many drugs are being made and distributed to our regular

pharmacies....from CHINA. These so called " drugs " look like our medicines, but

are as useless as a sugar pill. However, some can have really bad substances

in them and can harm the kidneys and shut down our major organs! (I saw a

program about this on one of the major networks.) Even a registered pharmacist

cannot tell the difference from a known brand. I've really wondered about some

of my own drugs...they seem not to be working. BP, pain meds, etc., and

would really like to test them to see if they are the REAL thing. The following

paragraph was copied from:

_http://www.pharmacycenter.org/faq.php_

(http://www.pharmacycenter.org/faq.php)

<<Open Your Own Online Pharmacy!

Why not just open your own Online Pharmacy? This way you control your own

retail prices! We payout every Week by wire or check! Your web site prints in

large letters at the top of all customer invoices ensuring you get the next

order, plus we pro actively email your customers when a refill is due. In all

cases the customer is directed back to your site. We offer a hand's off

program, all Customer Support is handled by our team. To help you drive traffic

and

sales you will be able to create your own unlimited level Affiliate program

that provides lifetime tracking, and commissions for your affiliates! So why

not join today?>>

I continued to go to links from this site and it eventually took me to this

web site:

_http://www.fabida.net/_ (http://www.fabida.net/)

Which said: <<What are the online pharmacy benefits...

No prior Rx is required.

* Free online medical consultation by a licensed U.S. physician.

* No embarassment — prescriptions are always confidential.

* No appointments — order prescription drugs anytime, anywhere.>>

I can't believe that this site could possibly be legal. Can you

imagine...getting Rx without " seeing " a doctor, no appointments? Can you

imagine this?

Buyer beware! Congress needs to do something about these online drug stores.

Kids are probably getting their drugs this way. I've heard that kids are

getting viagra. That is not a controlled substance. All they have to do is go

to

the internet! It says that some drugs are " controlled " and need a doctor's

consult...but who are the doctors who you consult with over the Internet?

Best regards, Connie (granny)

[Guest guest]

>

> Hi Kay,

> I was refering to CURE, I have no issues with steroids...

> Kay

Hi ,

Welcome to the group.

I can't speak for the site that listed the article but as to why I

posted a link from our site, I can.

As was mentioned in a previous email we are very understaffed. I use

computer programs to do most of the work including searching out

articles for the Current news weekly's. I then go through them and

mostly just read the same short synopsis you all do and choose which

to post. To expect an organization such as ours to read and verify

every article is somewhat unrealistic. Many of the articles only

mention the word and phrases I have our programs search for and have

little or nothing at all to do with the subject the reader may be

looking for.

This is why at the top of every Current news posting it says, " The

information contained in these articles may or may not reflect the

beliefs of RISG.ORG its staff or members. This information is for

informational purposes only and is not a substitute for professional

medical advice. " And at the top of the current news web page " The

information contained in these articles may or may not reflect the

beliefs of RISG.ORG its staff and members. "

Sorry for the confusion but it has always been up to those reading

our current news to decide what is worth reading and what is not.

Rick Hahn

Rick@...

http://www.risg.org

[Guest guest]

Hi Rick

I do exactly the same thing when searching for information. I use pretty well

the same sources you use and enter into the news search engine very cursory

information. I have been blindsided a couple of times.

I have now gotten into the practice of searching within the sorted webpages for

more detailed information.

BTW I also get visits from folks in town that are trying to make an extra buck

or two who get sucked into buying and selling more cure alls than I need. I

feel a bit guilty when I do not buy, but I have bought stuff in the past and it

sits in a cupboard awaiting me.

As you may think folks, I am an easy sell if it will help them out. Then I warn

them of the barely legal sales tactics and claims. One lady even claimed the

particular T Tree oil product she was selling had their own brand of Tylenol.

That perked my ears up and I asked to see the sample bottle. Sho nuff, right on

the label it said manufactured for xyz company by Wampole, Winnipeg, Manitoba.

Deceptive sales practices, folks would think that the pills contained the magic

product they were being sold. It was only generic acetominaphen which is

available for $2.99 or less at your local drug store under their store brand

name.

Fr. Dave

[Guest guest]

You know, I've thought before that maybe I should only post those

articles that are more specifically about our ailments. If I did there

wouldn't be near as many articlesbut... Id be interested in hearing

everyone's opinion about this.

Thanks.

Rick

[Guest guest]

rick, i dont read the articles often but when i do i only read the ones

regarding my ailment, reactive arthritis/reiters suposedly. sometimes another

article catches my eye.....

james

Rick Hahn <rickh@...> wrote: You know,

I've thought before that maybe I should only post those

articles that are more specifically about our ailments. If I did there

wouldn't be near as many articlesbut... Id be interested in hearing

everyone's opinion about this.

Thanks.

Rick

---------------------------------

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[Guest guest]

Rick,

I've enjoyed your articles and wouldn't change what you post. We all

need to use common sense and be realistic in that anything found on the

internet has the possibility of being inaccurate.

If it wasn't for articles I found on the internet, I would have never

known to go to a Rheumy 2 years ago when I got sick. I self-diagnosed

myself with Reactive Arthritis and made the appointment the day after I

was told by an Emergency Room Doctor (my leg swelled up for no apparent

reason) that I was " not just healthy, I was perfectly healthy " .

Thanks for your articles and keep posting them!

[Guest guest]

couldn't have put it better. I agree. Best regards, Connie

[Guest guest]

Rick -

I agree with and Connie - the articles are very helpful and

interesting. Thanks for doing it!

Meg