Re: 1st time going to a Rheumatologist after diagnosis

[Guest guest]

Hi Lori,

I've been on Enbrel for over five years, and it works wonderfully for

me. I also am lucky enough not to have any adverse side effects. It

works so well that my RA is now doing very well on half the prescribed

dosage. Just because lots of bad side effects are listed, it doesn't

mean that you're going to get them. You may not get any of them, but

if you do, stopping the med should stop the side effects. Good luck!

Sue

On Jan 14, 2010, at 12:31 PM, pete_lor@... wrote:

> Enbrel scares me because of the side effect warnings (especially

> the fatal heart attack ones and the serious infections). Orencia

> seems to have less side effects (at least from what I read). Can

> anyone help me know a little about your experiences with these

> drugs? Maybe put the fears in perspective? I'm in so much pain, I

> guess I'll try anything. But if you could give me some information

> I would appreciate it. I feel like knowledge is key in being

> responsible for my treatment. Any help or suggestions would be

> greatly appreciated.

>

[Guest guest]

Lori,, I too live in TN-just outside of Nashville-have a great rheumatologist

and usually get in to see him without hardly any wait.  I too was diagnosed

about 7 years ago.  I am on Enbrel and low dose steroids and manage fairly

well.   I have a no problems with enbrel and it have really helped with the

symptoms-pain, stiffness, etc.  Fatique is the hardest part to deal with.

Hope your new appt. goes well and that you can get on a regime that works for

you.  linda

 afa

From: pete_lor@... <pete_lor@...>

Subject: [ ] 1st time going to a Rheumatologist after diagnosis

Date: Thursday, January 14, 2010, 11:31 AM

 

Hello. I'm Lori. I have had RA for approximately 7 years but have never

gotten anywhere with help. I went to a RA Dr. at the beginning of my symptoms.

All over body pain, joint stiffness, tender points. Was diagnosed with Fibro...

and given Darvocet. Told to eat more fiber.

After several years of my General Practitioner Dr. treating me (which included

one RA test which was positive and one which was negative??)and trying

methotrexate and celebrex without relief (Bextra helped me greatly but was taken

off market. That's when things really started getting worse. Also have

interstitial cystitis and severe allergic dermatitis in a " private area " . IBS

etc.... Some of the usual stuff that people tend to have along with RA.

I live in Tennessee and the city I live in only has 3 RA Dr.'s on my insurance

and it is practically impossible to get in to see them. I have been waiting 4

months for a call to even get an appointment. I have a new General Practitioner

Dr. and she has done extensive tests and my RA test came back very positive.

She put me on Prednisone for awhile till I could see a RA Doctor. 20 mg was

wonderful for me. It relieved so many of my symptoms and I lost 12 lbs and was

able to sleep good for the first time in years but she didn't like me being on

the Prednisone and insisted I cut down on dosage. Once I started cutting back,

pain came back in full force. Depression struck and I was worse off then

before. I have pre-diabetes and that was one reason she didn't like me being on

the Prednisone (but I was working hard on keeping my sugar levels good and was

successful). Not sure why she was so adamant about the Prednisone. It did not

effect me with bad

temper or anything except help with my pain. Anyway, getting to the point of

all this. I am scheduled for an appointment with a RA doctor at Vanderbilt in

Nashville, about a 2 hour drive for me. I'm not sure what to expect and don't

really know any good questions to ask or what meds to talk about. Enbrel scares

me because of the side effect warnings (especially the fatal heart attack ones

and the serious infections). Orencia seems to have less side effects (at least

from what I read). Can anyone help me know a little about your experiences with

these drugs? Maybe put the fears in perspective? I'm in so much pain, I guess

I'll try anything. But if you could give me some information I would appreciate

it. I feel like knowledge is key in being responsible for my treatment. Any

help or suggestions would be greatly appreciated.

Take care everyone

Lori

[Guest guest]

Lori, try not to worry.

Vanderbilt is a well-respected institution, and I'm sure your new

rheumatologist will try to help you.

Generally speaking, RA patients have more to fear from RA than from

the medications used to treat it. Today, disease-modifying

antirheumatic drugs (DMARDs) are the foundation of treatment for RA.

DMARDs (like methotrexate, Enbrel, and Orencia) are used to slow or

stop the progression of the disease.

Although prednisone has been found to extert some DMARD-like effects,

it is not considered a true DMARD. Also, long term use of prednisone,

particularly at high doses (20 mg of prednisone is a high daily dose

for RA), can have very serious side effects. That is why your GP did

not want you to stay on it.

Good luck!

Not an MD

On Thu, Jan 14, 2010 at 11:31 AM, pete_lor@...

<pete_lor@...> wrote:

> Hello.  I'm Lori.  I have had RA for approximately 7 years but have never

gotten anywhere with help.  I went to a RA Dr. at the beginning of my symptoms.

 All over body pain, joint stiffness, tender points.  Was diagnosed with

Fibro... and given Darvocet.  Told to eat more fiber.

>

> After several years of my General Practitioner Dr. treating me (which included

one RA test which was positive and one which was negative??)and trying

methotrexate and celebrex without relief (Bextra helped me greatly but was taken

off market.  That's when things really started getting worse. Also have

interstitial cystitis and severe allergic dermatitis in a " private area " . IBS

etc.... Some of the usual stuff that people tend to have along with RA.

>

> I live in Tennessee and the city I live in only has 3 RA Dr.'s on my insurance

and it is practically impossible to get in to see them.  I have been waiting 4

months for a call to even get an appointment.  I have a new General Practitioner

Dr. and she has done extensive tests and my RA test came back very positive.

 She put me on Prednisone for awhile till I could see a RA Doctor.  20 mg was

wonderful for me.  It relieved so many of my symptoms and I lost 12 lbs and was

able to sleep good for the first time in years but she didn't like me being on

the Prednisone and insisted I cut down on dosage.  Once I started cutting back,

pain came back in full force.  Depression struck and I was worse off then

before.  I have pre-diabetes and that was one reason she didn't like me being on

the Prednisone (but I was working hard on keeping my sugar levels good and was

successful).  Not sure why she was so adamant about the Prednisone.  It did not

effect me with bad temper or anything except help with my pain.  Anyway, getting

to the point of all this.  I am scheduled for an appointment with a RA doctor at

Vanderbilt in Nashville, about a 2 hour drive for me.  I'm not sure what to

expect and don't really know any good questions to ask or what meds to talk

about.  Enbrel scares me because of the side effect warnings (especially the

fatal heart attack ones and the serious infections). Orencia seems to have less

side effects (at least from what I read). Can anyone help me know a little about

your experiences with these drugs?  Maybe put the fears in perspective?  I'm in

so much pain, I guess I'll try anything.  But if you could give me some

information I would appreciate it.  I feel like knowledge is key in being

responsible for my treatment.  Any help or suggestions would be greatly

appreciated.

>

> Take care everyone

>

> Lori