Fran

December 1, 2006

thanks

Kiars fevers have become more manageable but the arthritis end is getting worse.

Where did you find was the easiest area to inject?

please email me proudmom@...

got lots to ask

Re: fran

http://www.enbrel.com/index.jsp?f=7

,

The link is to the enbrel site. The info below is from the site. Enbrel is a

wonderful drug that does have some major side effects especially with increasing

infection rate and increase in malignancy rates... Only you and the doctors can

decide if the benefits outweigh the side effects. Everything is on the internet

now from the medication companies... make sure you read the patient information

and the prescribing information. Enbrel also offers a service with trained

registered nurses who you can call and discuss issues with while on the

medication...

As for comparing to Prednisone there is NO comparrison... you can compare side

effects yes, but the medications are TOTALLY different. One masks disease and

works as an anti-inflammatore(prednisone) while the other Enbrel is a TNF med.

ENBREL is a genetically engineered soluble tumor necrosis factor (TNF)

receptor that supplements the body's regulatory process by inhibiting TNF.

ENBREL

a.. Mimics the inhibitory effects of naturally occurring TNF receptors

b.. Helps restore the body's natural balance between TNF and soluble TNF

receptors

c.. Has not been shown to induce neutralizing antibodies

d.. Does not lyse cells in vitro in the presence or absence of complement

Immunizations need to be brought up to date with Enbrel PRIOR to administering

the medication. Live vaccines should not be given when on Enbrel. If exposed to

Chicken Pox you should stop temporarily.

In general, the adverse events in pediatric patients were similar in frequency

and type as those seen in adult patients (see WARNINGS and other sections under

ADVERSE REACTIONS in the ENBREL Prescribing Information).

Severe adverse reactions reported in 69 JRA patients ages 4 to 17 years

included varicella (see also PRECAUTIONS, Immunizations in the ENBREL

Prescribing Information), gastroenteritis, depression/personality disorder,

cutaneous ulcer, esophagitis/gastritis, group A streptococcal septic shock, type

I diabetes mellitus, and soft-tissue and postoperative wound infection.1

Forty-three of 69 (62%) children with JRA experienced an infection while

receiving ENBREL during 3 months of study (part 1, open-label), and the

frequency and severity of infections were similar in 58 patients completing 12

months of open-label extension therapy. The types of infections reported in JRA

patients were generally mild and consistent with those commonly seen in

outpatient pediatric populations. Two JRA patients developed varicella infection

and signs and symptoms of aseptic meningitis, which resolved without sequelae.1

The following adverse events were reported more commonly in 69 JRA patients

receiving 3 months of ENBREL compared to the 349 adult RA patients in

placebo-controlled trials. These included headache (19% of patients, 1.7 events

per patient-year), nausea (9%, 1.0 event per patient-year), abdominal pain (19%,

0.74 event per patient-year), and vomiting (13%, 0.74 event per patient-year).1

a.. Become familiar with the support available through Enliven Services. When

they leave your office, patients beginning therapy with ENBREL are not alone. A

wide variety of free support is available through Enliven Services, including

access to registered nurses toll-free at 1-888-4ENBREL (1-888-436-2735), 8 am to

11 pm Eastern time, 7 days a week

June 7, 2007

In a message dated 6/7/2007 7:03:32 P.M. Eastern Daylight Time,

frand2@... writes:

why it

was labeled parathyroid tumor spect

they call the scan whatever they are scanning for....in your case, a

parathyroid tumor. I also had this scan for PT once upon a time during process

of

elimination (had elevated calcium too). I had one saliva gland that took up ALL

the Tc-99 clear through the delayed imaging. Only my heart and saliva gland

lit up.

What are your thyroid levels if you have nodules on your thyroid? My nodule

on my thyroid was cancer.

I would try to find a different doctor. I went through 3 endos, 2 primaries,

2 nephrologists, and several radiologists who all said my adrenal adenoma

was nothing since it had not grown in 3 years. I kept getting worse with

malignant hypertension numerous times, a heart attack, and major pain all over.

I

then fired my primary doctor, took in a butt-load of info highlighted to a new

primary regarding Conn's. He didn't think so either but the radiologist

suggested the AVS and walla! All the time they all were suspecting a pheo and

blocked me a week for a pheo prior to surgery. It worked and my bp was stable

throughout the surgery. It was a classic Conn's adenoma.

You are being misinformed by your doctor about carcinoid and the octreoscan.

Arm up with the best info on the topic from carcinoid.org. Print it out and

highlight pertinent info. There are other specialists but you may have to go

somewhere else. You can also email Doc Woltering or even call him. He

welcomes all calls, emails, etc. His email address, etc are:

Eugene A. Woltering MD FACS

The D. Rives Professor of Surgery and Neurosciences

Chief, Sections of Surgical Oncology and Endocrine Surgery

Director of Surgical Research

LSUHSC Department of Surgery

New Orleans LA 70112

504-884-3555-cell

Clinic address:

200 West Esplanade Ave, Suite 200

Kenner La 70065

504-464-8500- clinic appointments

504-464-8525-clinic fax

1-866-91-ZEBRA (1-866-919-3272)

_EWolte@..._ (mailto:EWolte@...)

I can sure sympathize with you regarding bad doctors (all in all, I fired

several along with radiologists). You know when something is wrong. I was told

by a doctor friend that in med school they spent 20 minutes on " diseases

you'll never see " i.e. carcinoid, pheos, etc. Doctors should know " If it's not

a

horse, then look for a zebra " . Unfortunately, they don't. I couldn't tell you

how many doctors I talked to who had never heard of Conn's but had heard of

's. We have to educate them and arm up with the proof since to many of

them, we are peons who know nothing. If someone is not willing to work with

you (they work for you), then move on.

Debi

************************************** See what's free at http://www.aol.com.

June 8, 2007

I assure you that every MD has heard of Conn's. Almost always on one of the

qualifiying exams. Unless they did not go to school that day which happens

often unfortunatley.

So any Dr who says they have never heard of Conn's needs to complain to their

Medical School and training program for inadequate training on how to take

care of the most common disease the will deal with not matter what they

practice-high blood pressure.

National Guidelines JNCs have been mailed to every Dr in practice for over 25

years. They all discuss Conn's. You should complain to the state medical

board.

May your pressure be low!

Clarence E. Grim, BS, MS, MD

Senior Consultant to Shared Care Research and Consulting, Inc.

(sharedcareinc.com)

Clinical Professor of Internal Medicine and Epidemiology Med. Col. WI

Clinical Professor of Nursing, Univ. of WI, Milwaukee

Specializing in Difficult to Control High Blood Pressure

and the Physiology and History of Survival During

Hard Times and Heart Disease today.

**************************************

See what's free at http://www.aol.com.

June 8, 2007

Debi,

I just looked at the carcinoid.org's list of local physicians and am

happy to say that my current endo is listed there. I only saw him

once and don't think I even mentioned the sweating/flushing. He did

have all my tests from UVA that showed 5-hiaa and cg A elevated. I

am not happy about the snap decision he made that the pain in my feet

is caused by diabetic neuropathy. I read on some web site that

calcitonin is one thing that they test and that it raises calcium/PTH

hormone levels. I don't think mine has ever been checked. I don't

think his office is open on Fri so will call for an appointment on

Mon and take my latest test results from UVA. I am waiting to see if

the surgeon wants to do anything about my thyroid. My primary is

going to have to go, I decided that a few months ago. He keeps

telling me to go to the Mayo clinic and I told him it was 1000 miles

away. His reply was " So? " I wanted a refill on lorazapam which I

take at night to help me sleep. He said, " let's try 3 " and wrote the

RX for 3 x day. I know I am a bitchy patient but if his idea of

treating me is to drug me, he isn't the doc for me. He doesn't even

check my heart even though he knows my bp has been out of control for

8 years. He only orders blood work when I ask him to and last year,

when I asked him to check my triglycerides he asked if I wanted blood

drawn now or did I want to fast first. Of course I didn't want to

get up early and go back so I decided to do it then. When I got the

results, they were about the same as before and I thought how do I

know if it is improving since all previous tests were done when I was

fasting.

Fran

>

> In a message dated 6/7/2007 7:03:32 P.M. Eastern Daylight Time,

> frand2@... writes:

>

> why it

> was labeled parathyroid tumor spect

>

> they call the scan whatever they are scanning for....in your case,

a

> parathyroid tumor. I also had this scan for PT once upon a time

during process of

> elimination (had elevated calcium too). I had one saliva gland that

took up ALL

> the Tc-99 clear through the delayed imaging. Only my heart and

saliva gland

> lit up.

>

> What are your thyroid levels if you have nodules on your thyroid?

My nodule

> on my thyroid was cancer.

>

> I would try to find a different doctor. I went through 3 endos, 2

primaries,

> 2 nephrologists, and several radiologists who all said my adrenal

adenoma

> was nothing since it had not grown in 3 years. I kept getting

worse with

> malignant hypertension numerous times, a heart attack, and major

pain all over. I

> then fired my primary doctor, took in a butt-load of info

highlighted to a new

> primary regarding Conn's. He didn't think so either but the

radiologist

> suggested the AVS and walla! All the time they all were

suspecting a pheo and

> blocked me a week for a pheo prior to surgery. It worked and my

bp was stable

> throughout the surgery. It was a classic Conn's adenoma.

>

> You are being misinformed by your doctor about carcinoid and the

octreoscan.

> Arm up with the best info on the topic from carcinoid.org. Print

it out and

> highlight pertinent info. There are other specialists but you may

have to go

> somewhere else. You can also email Doc Woltering or even call him.

He

> welcomes all calls, emails, etc. His email address, etc are:

>

> Eugene A. Woltering MD FACS

> The D. Rives Professor of Surgery and Neurosciences

> Chief, Sections of Surgical Oncology and Endocrine Surgery

> Director of Surgical Research

> LSUHSC Department of Surgery

> New Orleans LA 70112

> 504-884-3555-cell

> Clinic address:

> 200 West Esplanade Ave, Suite 200

> Kenner La 70065

> 504-464-8500- clinic appointments

> 504-464-8525-clinic fax

> 1-866-91-ZEBRA (1-866-919-3272)

> _EWolte@..._ (mailto:EWolte@...)

>

> I can sure sympathize with you regarding bad doctors (all in all, I

fired

> several along with radiologists). You know when something is wrong.

I was told

> by a doctor friend that in med school they spent 20 minutes

on " diseases

> you'll never see " i.e. carcinoid, pheos, etc. Doctors should

know " If it's not a

> horse, then look for a zebra " . Unfortunately, they don't. I

couldn't tell you

> how many doctors I talked to who had never heard of Conn's but had

heard of

> 's. We have to educate them and arm up with the proof since

to many of

> them, we are peons who know nothing. If someone is not willing to

work with

> you (they work for you), then move on.

>

> Debi

>

> ************************************** See what's free at

http://www.aol.com.

>

June 8, 2007