Re: Advise for first time visit to Rhuematologist

[Guest guest]

Hi Terri!

First off, try not to worry too much! I remember going through the same thing.

My primary told me it was either RA or lupus and I did the searches and scared

the you-know-what out of myself.

Second, if it is RA, with the medications today a lot of the damage can be

reduced dramatically. (I'm at 8 years now with only minor damage to my pinkie

finger joints.

Third, give yourself time! Time to absorb what's happening to you. Time to

adjust. It's a big adjustment and you will need the time to make it. Time to

learn about this disease, if it's even what you have!

You've already done the most important thing. Reaching out to people in the same

situation! I've just joined this group and they have taught me a lot already.

(and, as I said, I've had RA for 8 years.)

The best thing I did was to join an online support group.

The Arthritis Foundation: http://www.arthritis.org/

Good luck to you Terri.

Life may not be the party we hoped for,

but while we're here

we might as well dance.

From: jenkstl@...

Date: Mon, 12 Jul 2010 18:28:55 +0000

Subject: [ ] Advise for first time visit to Rhuematologist

I have been experiencing consistent wrist and finger pain and minor other

joint pain. A recent blood test showed my RA Facor to be 94 (normal is under

11). My Doc says to get to a Rheumatologist. The earliest I can get to one is 8

weeks out. This leaves me to Google searches on RA which frankly, has me scared

to death - both of the disease AND the medications.

I would greatly appreciate any advise on what to ask/cover with the

Rheumatologist on my first visit. Also, any other sites that would be helpful.

Thanks so much!

Signed,

(Terrified) Terri

[Guest guest]

Terri, one of your problems is that you read too much! This disease can be

controlled much more than in the past and you may not have to put up with

the efects after seeing the Rheumy and getting the right meds. I think

you'll find that it's not as bad as you are afraid of. Sometimes knowledge

is a dangerous thing.

You already know that you may be bed-ridden or you may not miss more than

the day of work you lose seeing the doctor. I can tell you the more you

worry about it, the worse it can be. It responds to agitation and worry as

much as it responds to meds. You'll be better off with a positive attitude

no matter what the outcome is. I've had RA for 20 years and spent a few

years in bed or in the recliner. I still have times like that but I also

have times we can get on the motorcycle and visit other states or areas of

Texas. That's the way it is for me, your experience will be different.

Dennis in eastexas

On Mon, Jul 12, 2010 at 1:28 PM, jenksterri <jenkstl@...> wrote:

>

>

> I have been experiencing consistent wrist and finger pain and minor other

> joint pain. A recent blood test showed my RA Facor to be 94 (normal is under

> 11). My Doc says to get to a Rheumatologist. The earliest I can get to one

> is 8 weeks out. This leaves me to Google searches on RA which frankly, has

> me scared to death - both of the disease AND the medications.

> I would greatly appreciate any advise on what to ask/cover with the

> Rheumatologist on my first visit. Also, any other sites that would be

> helpful.

> Thanks so much!

>

> Signed,

>

> (Terrified) Terri

>

>

>

[Guest guest]

I think the saying is, " A LITTLE knowledge is a dangerous thing. "

Sometimes you know just enough to misunderstand things, LOL.

Dennis, I hope you're doing well these days.

Sue

On Jul 13, 2010, at 7:04 PM, Dennis W wrote:

> Terri, one of your problems is that you read too much! This disease

> can be

> controlled much more than in the past and you may not have to put up

> with

> the efects after seeing the Rheumy and getting the right meds. I think

> you'll find that it's not as bad as you are afraid of. Sometimes

> knowledge

> is a dangerous thing.

[Guest guest]

Terri,

Yes, it does sometimes take a long time to get in to see a

rheumatologist. Why don't you call the office and ask to be called if

someone cancels an appointment? Then maybe you could get in more

quickly. In the meantime, has your doctor prescribed any medication to

help you in the meantime? If not, ask him/ her to.

At your first visit, the rheumatologist will probably order a lot of

blood tests. He will also examine you to see what condition your

joints are in. He will probably have you come in later for all of the

results.

Believe me, rheumatoid arthritis is worse than the medications. The

consensus these days is to treat RA very aggressively from the

beginning, to prevent joint damage, which is irreversible. If a

medication has too many adverse effects, it can be stopped and another

one can be tried. It usually does take a while of experimentation to

find the most helpful med for each individual, since we are all

different.

I have had RA since 2001. I was on methotrexate, and then Arava. These

two caused my white blood cell count to get too low, so then I was

switched to Enbrel. It has turned out to be my miracle drug and has

kept my RA under great control so that I have no joint damage.

Here are a few sites that will help you learn about RA:

http://www.mayoclinic.com/health/rheumatoid-arthritis/DS00020

http://www.arthritis.org/disease-center.php?disease_id=31

http://www.webmd.com/rheumatoid-arthritis/default.htm

Good luck. This is a very good, supportive group to be a part of.

Sue

On Jul 12, 2010, at 2:28 PM, jenksterri wrote:

> I have been experiencing consistent wrist and finger pain and minor

> other joint pain. A recent blood test showed my RA Facor to be 94

> (normal is under 11). My Doc says to get to a Rheumatologist. The

> earliest I can get to one is 8 weeks out. This leaves me to Google

> searches on RA which frankly, has me scared to death - both of the

> disease AND the medications.

> I would greatly appreciate any advise on what to ask/cover with the

> Rheumatologist on my first visit. Also, any other sites that would

> be helpful.

> Thanks so much!

>

> Signed,

>

> (Terrified) Terri

[Guest guest]

Hi Terri.  I was the same way as you, terrified!..I got hit with RA fast and

hard, and in 6 days I was so bad, that I was almost in a wheelchair.  I knew

nothing about RA, saw the Rheumatologist, and she instantly gave me 2 injections

of Prednisone, and a injection of MTX.  I was at the point I will take anything

I have to to feel better.  I never looked into the meds., etc.

 

A few weeks later, I went on the internet to look up RA, and then I was

terrified and never looked it up again.

 

My Rheumy treated my RA very aggressively from day one.  I was struck with RA 6

years ago.  With the meds I take, I have been in a full remission for over 1 

1/2 years.  No flares, no swelling, and no pain.  It did take awhile for my

Rheumy to find the right " cocktail " of meds for me.  I am very grateful and

thankful for how far I have come.  To this day, I have never looked up RA on the

net again.  I will take whatever I need to to feel better.  Don't dispare, there

are better days ahead.  I never ever read about the meds I take or the side

effects.  That is just me.

 

I hope you have a good appt. with your Rheumy, and he/she starts you on RA meds.

right away.

Remember, we are all here for you.  It is great you have joined our wonderful

group.

 

Hugs,

 

Barbara

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

[Guest guest]

Barbara,

What cocktail of meds are you currently taking?  I would love to be in

remission, since this hasn't happened for me since it reared it's ugly head. 

Heidi in Denver

________________________________

From: Barbara Creedon <bcreedon@...>

Sent: Tue, July 13, 2010 8:00:57 PM

Subject: Re: [ ] Advise for first time visit to Rhuematologist

 

Hi Terri.  I was the same way as you, terrified!..I got hit with RA fast and

hard, and in 6 days I was so bad, that I was almost in a wheelchair.  I knew

nothing about RA, saw the Rheumatologist, and she instantly gave me 2 injections

of Prednisone, and a injection of MTX.  I was at the point I will take anything

I have to to feel better.  I never looked into the meds., etc.

 

A few weeks later, I went on the internet to look up RA, and then I was

terrified and never looked it up again.

 

My Rheumy treated my RA very aggressively from day one.  I was struck with RA 6

years ago.  With the meds I take, I have been in a full remission for over 1 

1/2 years.  No flares, no swelling, and no pain.  It did take awhile for my

Rheumy to find the right " cocktail " of meds for me.  I am very grateful and

thankful for how far I have come.  To this day, I have never looked up RA on

the

net again.  I will take whatever I need to to feel better.  Don't dispare,

there

are better days ahead.  I never ever read about the meds I take or the side

effects.  That is just me.

 

I hope you have a good appt. with your Rheumy, and he/she starts you on RA meds.

right away.

Remember, we are all here for you.  It is great you have joined our wonderful

group.

 

Hugs,

 

Barbara

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

[Guest guest]

Hi Heidi.  Here is what I take each day.

 

Sulfasalazine, 6 pills a day.

 

Prednisone, 10 mg. a day

 

Placquenil, 2 pills a day

 

Inject MTX 1 x a week

 

2 Leucovorin pills 12 hours after I inject MTX..

 

For pain meds, I always have a RX on hand for:  Oxycodone

 

Tylenol #3 with codiene

 

I also take Cal. 1200 w/ vit.  D 400.

 

Actonal calcium 1  tab. a month

 

 

When I got diagnosed, she started me right away on MTX, and Prednisone, on a

very high dose.

 

Then she added the Sulfasalazine.  Each time she added another med, she would

wait a few months to see how I was feeling etc.  Then she added Placquenil, but

before I sarted it, I had to have a complete eye exam with my eye surgeon.

 

The only problem I had was I got catarac's from the Pred.  It was a fast easy

simple surgery, no recovery time, and I had each eye done a week apart.  I had

worn glasses since I was 14, for distance, but after the surgery I no longer

needed them.  I have 20/20, in one eye, and 20/25 in the other.  He had one

fixed so I could read my watch easily.

 

I have never been able to get off the Pred. and I keep trying from time to

time.  My blood work is done every 2 months and it has always been perfect. 

The only time the numbers went up was when I was flaring.

 

Hope this helps you.  Wishing you pain free days ahead.  Rest often as it does

help.

 

Hugs,

 

Barbara

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

[Guest guest]

No, Sue, sometimes any knowledge is dangerous. My daughter's boyfriend was

working on her truck and when he finished, the brake lights didn't work. His

'knowledge' told him that he knew this one was the fuse for that circuit. I

checked it and it was good. He spent the whole HOT day under the dash trying

to find out why the brake lights didn't work. I checked the switch and other

fuses to make sure they were ok. Finally, he discovered that he had the

WRONG fuse! He replaced the fuse and it worked. His 'knowledge' failed him

this time.

I'm doing fairly well, thanks. My chest still hurts from the bypass surgery,

some days more than others, but it's still healing. I fell Sunday afternoon

and skinned my left elbow and right palm, bruised my left hip, and messed my

back up worse than it was. I saw a new Rheumy today, one I had used before,

and he put me to the task of finding out what biologic I can afford. My

insurance didn't know and will have to call me back when they find out. I'd

fired my Rummy since he didn't want to work on my RA, just force me to quit

Prednisone. When I called for a refill on my pills, he wrote it for only 30

pills, trying to force me to take less. I'd already told him I couldn't get

off it, but he is determined, so I quit him. That was easier than quitting

Prednisone and no withdrawal!

Dennis in eastexas

On Tue, Jul 13, 2010 at 7:13 PM, marysue <marysue@...> wrote:

>

>

> I think the saying is, " A LITTLE knowledge is a dangerous thing. "

> Sometimes you know just enough to misunderstand things, LOL.

>

> Dennis, I hope you're doing well these days.

>

> Sue

>

>

> On Jul 13, 2010, at 7:04 PM, Dennis W wrote:

>

> > Terri, one of your problems is that you read too much! This disease

> > can be

> > controlled much more than in the past and you may not have to put up

> > with

> > the efects after seeing the Rheumy and getting the right meds. I think

> > you'll find that it's not as bad as you are afraid of. Sometimes

> > knowledge

> > is a dangerous thing.

>

>

>

[Guest guest]

Dennis,

I'm sorry about the fall; that's one thing you didn't need. I'm sure

that pain lasts a while any time they have to crack open your chest.

Hopefully, the pain will soon be gone.

I hope you will have a good fit with your new rheumy. I wish you good

luck with the insurance and a biologic. I consider myself extremely

lucky that Enbrel works so well for me. I don't even need prednisone,

either. I'm glad I stayed on it just a few months while waiting for

MTX to take effect, because it does seem to be practically impossible

to go off of it after long-term use.

I will keep you in my thoughts and prayers.

Sue

On Jul 14, 2010, at 11:07 PM, Dennis W wrote:

>

> I'm doing fairly well, thanks. My chest still hurts from the bypass

> surgery,

> some days more than others, but it's still healing. I fell Sunday

> afternoon

> and skinned my left elbow and right palm, bruised my left hip, and

> messed my

> back up worse than it was. I saw a new Rheumy today, one I had used

> before,

> and he put me to the task of finding out what biologic I can afford.

> My

> insurance didn't know and will have to call me back when they find

> out. I'd

> fired my Rummy since he didn't want to work on my RA, just force me

> to quit

> Prednisone. When I called for a refill on my pills, he wrote it for

> only 30

> pills, trying to force me to take less. I'd already told him I

> couldn't get

> off it, but he is determined, so I quit him. That was easier than

> quitting

> Prednisone and no withdrawal!

[Guest guest]

Hi Barbara,

Wow you take an arsenal of drugs just like me.  My Dr. has never mentioned

Sulfasalazine or Placquenil.  What are the benefits from these drugs?  Do you

feel like this is the best cocktail for you?  I really hope your having a good

day.  I got up this morning and didn't hurt like hell and the sun is shining

and

thought today is going to be a good day.  I have a lot of errands today, but

despite any pain I may feel I'm determined to make this a really good day. 

Take

care!!

Heidi

________________________________

From: Barbara Creedon <bcreedon@...>

Sent: Wed, July 14, 2010 9:58:46 AM

Subject: Re: [ ] Advise for first time visit to Rhuematologist

 

Hi Heidi.  Here is what I take each day.

 

Sulfasalazine, 6 pills a day.

 

Prednisone, 10 mg. a day

 

Placquenil, 2 pills a day

 

Inject MTX 1 x a week

 

2 Leucovorin pills 12 hours after I inject MTX..

 

For pain meds, I always have a RX on hand for:  Oxycodone

 

Tylenol #3 with codiene

 

I also take Cal. 1200 w/ vit.  D 400.

 

Actonal calcium 1  tab. a month

 

 

When I got diagnosed, she started me right away on MTX, and Prednisone, on a

very high dose.

 

Then she added the Sulfasalazine.  Each time she added another med, she would

wait a few months to see how I was feeling etc.  Then she added Placquenil, but

before I sarted it, I had to have a complete eye exam with my eye surgeon.

 

The only problem I had was I got catarac's from the Pred.  It was a fast easy

simple surgery, no recovery time, and I had each eye done a week apart.  I had

worn glasses since I was 14, for distance, but after the surgery I no longer

needed them.  I have 20/20, in one eye, and 20/25 in the other.  He had one

fixed so I could read my watch easily.

 

I have never been able to get off the Pred. and I keep trying from time to

time.  My blood work is done every 2 months and it has always been perfect. 

The

only time the numbers went up was when I was flaring.

 

Hope this helps you.  Wishing you pain free days ahead.  Rest often as it does

help.

 

Hugs,

 

Barbara

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

[Guest guest]

Hi Heidi.  How great you woke up and feel so good.  I always have a plan for

my day too.  Yes, the sun is a happy sign for a nice day.  I hope you run your

errands successfully and have no pain.

 

When I was just taking MTX and Pred. I was still flaring, had lots of pain and

swelling.  My ankles and feet were hit the hardest.  Just trying to stand on

them when I woke up was pure torture. My blood work showed that I was flaring

badly for long spells each time.  She first added the Sulfasalazine, to see if

I could tolerate it or have any adverse reactions to it.  I did well on it, but

was still flaring.  I think I took the Sulfasalazine for 5 months before she

added the Placquenil.  I had to see my eye surgeon first to check out my eyes

before I could take it.  My eyes were fine. I have taken the Placquenil now for

over 1 1/2 years with great success.  It did take awhile before this " Cocktail "

of meds. began to work.  Finally I stopped flaring, no pain or swelling

anywhere.  I am very grateful for this.  This has all worked wonderfully for

me, and how long it continues to work I don't know.  I hope it is forever. 

Biologics will never

be a choice for me.  I was treated for TB exposure for one year.  I know with

Biologics TB is a bad side effect, and I don't want TB of the lungs or bones. 

It really is wonderful that there are so many RA drugs to try.  We all seek to

find the ones that work for us.  I did have a bad flare a few months ago, but

my Rheumy upped my Pred. from 5 mg to 10mg each day and it worked great.  After

my surgery heals, I will decrease back to 5 mg.  I hope my information helps

you.

 

I too have some errands to run today.  It is very sunny and hot in Florida. I

love AC and could not live here without it.  Right Doreen?  Melynda roasts in

Texas also........Dennis too........

 

It is always nice to talk with you.  Have a great day and I hope you begin to

feel better and better

each day.

 

Hugs,

 

Barbara

 

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

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[Guest guest]

i'll still have pain from the surgery for 6 months to a year. It takes time

for healing and rerunning nerves. One place that's giving me problems is

where they harvested an artery in front of my chest just beside my right

nipple. I'd noticed swelling and pain in that area but thought it was just a

place where they clamped it since it felt like a round spot. Now it goes

over to the center of my chest and swells a lot. Tonight I was making

adjustments to the inversion table and now my chest hurts a lot more and is

swollen, too.

I can't believe the old Rummy was trying to force me off Prednisone by

refusing me the script for more than the 5mg he wanted me on. Is that even

legal? It's not like I'm abusing it as a controlled substance. I'm certainly

going to give him a bad rating on his website because he deserves it!

Dennis in eastexas

On Thu, Jul 15, 2010 at 2:59 PM, marysue <marysue@...> wrote:

>

>

> Dennis,

>

> I'm sorry about the fall; that's one thing you didn't need. I'm sure

> that pain lasts a while any time they have to crack open your chest.

> Hopefully, the pain will soon be gone.

>

> I hope you will have a good fit with your new rheumy. I wish you good

> luck with the insurance and a biologic. I consider myself extremely

> lucky that Enbrel works so well for me. I don't even need prednisone,

> either. I'm glad I stayed on it just a few months while waiting for

> MTX to take effect, because it does seem to be practically impossible

> to go off of it after long-term use.

>

> I will keep you in my thoughts and prayers.

>

> Sue

>

>

> On Jul 14, 2010, at 11:07 PM, Dennis W wrote:

> >

> > I'm doing fairly well, thanks. My chest still hurts from the bypass

> > surgery,

> > some days more than others, but it's still healing. I fell Sunday

> > afternoon

> > and skinned my left elbow and right palm, bruised my left hip, and

> > messed my

> > back up worse than it was. I saw a new Rheumy today, one I had used

> > before,

> > and he put me to the task of finding out what biologic I can afford.

> > My

> > insurance didn't know and will have to call me back when they find

> > out. I'd

> > fired my Rummy since he didn't want to work on my RA, just force me

> > to quit

> > Prednisone. When I called for a refill on my pills, he wrote it for

> > only 30

> > pills, trying to force me to take less. I'd already told him I

> > couldn't get

> > off it, but he is determined, so I quit him. That was easier than

> > quitting

> > Prednisone and no withdrawal!

>

>

>

[Guest guest]

Hi Dennis,

And of course prednisone causes healing to be slower. It certainly is

a two-edged sword, isn't it?

My sister had open-heart surgery several years ago. She had pain for a

long time afterward. Even Barbara Walters has taken off a long, long

time from " The View " after her open heart surgery to get a valve

replaced by one from a pig.

I hope you soon see the light at the end of the tunnel. You have been

through so much. I will keep you in my thoughts and prayers.

Sue

On Jul 16, 2010, at 11:14 PM, Dennis W wrote:

> i'll still have pain from the surgery for 6 months to a year. It

> takes time

> for healing and rerunning nerves. One place that's giving me

> problems is

> where they harvested an artery in front of my chest just beside my

> right

> nipple. I'd noticed swelling and pain in that area but thought it

> was just a

> place where they clamped it since it felt like a round spot. Now it

> goes

> over to the center of my chest and swells a lot. Tonight I was making

> adjustments to the inversion table and now my chest hurts a lot more

> and is

> swollen, too.

>

> I can't believe the old Rummy was trying to force me off Prednisone by

> refusing me the script for more than the 5mg he wanted me on. Is

> that even

> legal? It's not like I'm abusing it as a controlled substance. I'm

> certainly

> going to give him a bad rating on his website because he deserves it!

>

> Dennis in eastexas

[Guest guest]

Check with your eye docs. I was on plaquenil for a year and my

rheumatologist required me to get my eyes checked every six months. If you

take the

drug, it's important to have your vision checked every 6 months - first

visit gives the baseline, subsequent check-ups monitor for changes.

Jane from Michigan

In a message dated 7/16/2010 9:47:37 A.M. Central Daylight Time,

hkimball48@... writes:

Hi Barbara,

Wow you take an arsenal of drugs just like me. My Dr. has never mentioned

Sulfasalazine or Placquenil. What are the benefits from these drugs? Do

you

feel like this is the best cocktail for you? I really hope your having a

good

day. I got up this morning and didn't hurt like hell and the sun is

shining and

thought today is going to be a good day. I have a lot of errands today,

but

despite any pain I may feel I'm determined to make this a really good day.

Take

care!!

Heidi