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-Find a new Rheumy. Also, have them check for fibromyalgia, it has

similar symptoms. Good luck,

-- In @y..., " Boyd " <celticangel@d...>

wrote:

> Well, I went to my first Rhuemy appt. and personally it sucked.

She said she saw nothing, what I told her fit no profiles, and I

should see a psychiatrist because if we are not well mentally, we're

not well physically!!! But yet she took 9 viles of blood and took 24

x-rays! I'm so frusterated it's not funny. She just put me on

another AI and said we'd come up with a gameplan when the results

came back... she mentioned mtx as a trtmt. No Way! she can come up

with something else. I want another child, and I can't if I start

that crap. Oh well thanks for letting me rant!

>

>

> " A hundred years from now it will not matter what my bank account

was, the sort of house I lived in, or the kind of car I drove.....

But the world may be different because I was important in the life of

a child "

>

>

>

>

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In a message dated 12/14/2001 1:01:47 PM Eastern Standard Time,

celticangel@... writes:

<< She said she saw nothing, what I told her fit no profiles, and I should

see a psychiatrist because if we are not well mentally, we're not well

physically!!! >>

- Don't let her intimidate you. Keep doing the tests to rule out

other possibilities. I know it's frustrating, but there is no test for PA,

they can only rule out everything else. If this rheumy is so insensitive

though, you might want to try another. I lucked out - mine is so empathetic

and sweet - and let's me decide how I want to treat things. I used MTX for a

while and it did help. I'm now on enbrel because of liver problems. I don't

know what effects long term use of enbrel would have on wanting to have

children, but I think it's less damaging than MTX. Discuss enbrel with your

rheumy if you can.

Take Care,

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  • 7 months later...
Guest guest

Hi again Carol..I'm sorry to hear about the new addition to your " dance card "

shall we say. From what I understand it is so common that autoimmune diseases

appear in multiples. So many people I've spoken to have more than one at a

time..I know I do and it can be frustrating to say the least! One must sort out

symptoms with a fine toothed comb at one point. I do think you've done the right

thing to mention your lower back pain to your rheumy as that can be attributed

to so many things it's probably better your Dr. knows about it in my opinion.

Take care..

marrielle

[ ] Rheumy appt

>He examined me and said he thinks I have Ankylosing Spondylitis in addition

to the RA. He said it's not that common to get both, and something we have

to watch. The treatment is the same, so no new meds. But that is one more

reason to start being more aggressive. Does anyone else get pain in their

lower back during flares? He said AS doesn't affect the hands etc, and RA

usually doesn't affect the back.

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  • 6 months later...

Terri,

Two months is a long time to wait if you are in a lot of pain. If your

main source of pain is your foot and ankle, shouldn't that be addressed

sooner? I'm assuming the x-rays weren't interpreted while you were at

your rheumatologist's office yesterday. It would have been nice to know

while you were there what's going on in that area. If it's something

like a bone on bone situation, your current meds aren't likely to do

much for that.

In addition to your foot and ankle are there other parts of your body

that are worse than others? Is anything consistently very swollen?

What else was your rheumatologist thinking could be the source of your

pain?

Just maybe it's that you don't have the right sort of analgesic for the

situation.

Hope you get some help sooner,

[ ] Rheumy appt

> Went and saw my rheumy yesterday. This was a 1month follow up after

starting the Arava. My lab tests were fine. I have not had any real

relief that I can tell. My current regime is Enbrel, Arava, and Vioxx.

She (rheumy) is frustrated that I am not responding to the meds. She

wants to give me a full 12 weeks on the Arava before changing to

something else. My main pain is in the right foot and ankle.

>

> The plan: x-rays were taken of the ankle yesterday. Had x-rays on

both feet 6 months or so and that showed erosions in both feet. Now we

are going to look at the ankle and she will have me come back in 2

months and I will see an orthopedic podiatrist to see if there is

anything he can suggest or do (inject the joint, make an orthotic, or

whatever). Then I will see her right after seeing him. My rheumy is

3 - 3 1/2 hours from my house so it is an all day adventure. If the

podiatrist can't do anything or won't inject it the rheumy said she

would. If no change in my symptoms she will drop the Enbrel and put me

on Humira. She is wondering if my pain and discomfort are related to

something else rather than RA.

>

> Sorry to be long, but that is where I am at. After reading all the

posts from everyone I am starting to feel like I know all of you more

and more. Thanks for being a good source of info and love the comics.

What do they say....laughter is the best medicine!!!

>

> Terri

>

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,

Yes, 2 months does seem like a long time but when I have been feeling like this

for 8 months it doesn't seem too bad. It is a bit of a hardship to make the

trip to the rheumy. Long distance, 3 1/2 hours there and then the trip back.

No the x-rays were not available as this was done after my appt.

My right ankle does swell frequently, but not as much as it has in the past. I

would have to say that since I have been on the Enbrel the swelling is not as

frequent. It is just painful. My feet are the only parts that are bothered.

Once in a blue moon my hands are affected for a couple days.

The rheumatologist didn't say what she had in mind in regards to the pain. Just

that we might be dealing with something other than erosions or damage that may

be irreversible.

Terri

[ ] Rheumy appt

> Went and saw my rheumy yesterday. This was a 1month follow up after

starting the Arava. My lab tests were fine. I have not had any real

relief that I can tell. My current regime is Enbrel, Arava, and Vioxx.

She (rheumy) is frustrated that I am not responding to the meds. She

wants to give me a full 12 weeks on the Arava before changing to

something else. My main pain is in the right foot and ankle.

>

> The plan: x-rays were taken of the ankle yesterday. Had x-rays on

both feet 6 months or so and that showed erosions in both feet. Now we

are going to look at the ankle and she will have me come back in 2

months and I will see an orthopedic podiatrist to see if there is

anything he can suggest or do (inject the joint, make an orthotic, or

whatever). Then I will see her right after seeing him. My rheumy is

3 - 3 1/2 hours from my house so it is an all day adventure. If the

podiatrist can't do anything or won't inject it the rheumy said she

would. If no change in my symptoms she will drop the Enbrel and put me

on Humira. She is wondering if my pain and discomfort are related to

something else rather than RA.

>

> Sorry to be long, but that is where I am at. After reading all the

posts from everyone I am starting to feel like I know all of you more

and more. Thanks for being a good source of info and love the comics.

What do they say....laughter is the best medicine!!!

>

> Terri

>

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June,

The way I understand it is that Humira is the newest DMARDS out on the market

and is in the same category as Enbrel. It is an injectable medicine. The

rheumatologist had mentioned using Remicade, but I have terrible veins and

didn't want to go through the hassel or put the nurses through the hassel of

trying to keep the IV going.

Terri

[ ] Rheumy appt

Hi Terri,sorry you are having so many problems. Nothing worse than sore feet.

I suffered intolerable pain for 5 years before I finally had my feet operated on

and I know first hand what you are experiencing. You mentioned Humira and this

is a medication I am not familiar with. Can you tell me a little more about it?

I have been on Enbrel for a year along with Celebrix and Prednisone.

Hugs

June

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I did read that you traveled quite a long time to see your rheumy,

Terri. I am assuming that she knows that, too. It would have been nice

if she could have made the most of that appointment for you - for

example, by having you wait for the x-ray results and then, based on

what was found, taking some sort of action that would have immediately

addressed the pain that you are having (it may have been appropriate to

give you a corticosteroid injection or to prescribe a stronger

analgesic). Of course, I'm not sure of the office setup there. I'm just

sorry that you have to wait and walk on that ankle for two more months

before anyone is going to try something else.

Any chance that there is a local orthopedic physician who could review

the x-rays and help you sooner?

Re: [ ] Rheumy appt

> ,

> Yes, 2 months does seem like a long time but when I have been feeling

like this for 8 months it doesn't seem too bad. It is a bit of a

hardship to make the trip to the rheumy. Long distance, 3 1/2 hours

there and then the trip back. No the x-rays were not available as this

was done after my appt.

>

> My right ankle does swell frequently, but not as much as it has in the

past. I would have to say that since I have been on the Enbrel the

swelling is not as frequent. It is just painful. My feet are the only

parts that are bothered. Once in a blue moon my hands are affected for

a couple days.

>

> The rheumatologist didn't say what she had in mind in regards to the

pain. Just that we might be dealing with something other than erosions

or damage that may be irreversible.

>

> Terri

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Hi ,

I read Jim's post to . I just wanted to let him know that once or twice

each year I am given a couple of cortisone shots in my left ankle. (I only

let one of two rheumys give them to me -- the head of the department and the

one who is being groomed to take over one day). It makes an amazing

difference. They go way down into the joint. I hardly feel it since the

lanocaine is injected first. I also wear an elastic support on that ankle.

Maybe Jim could try it. I used to hurt all the time before that ankle was

under control, even though my original ordeal was with my hands.

Sincerely,

Patsy

Re: [ ] Rheumy appt

,

Yes, 2 months does seem like a long time but when I have been feeling like

this for 8 months it doesn't seem too bad. It is a bit of a hardship to

make the trip to the rheumy. Long distance, 3 1/2 hours there and then the

trip back. No the x-rays were not available as this was done after my appt.

My right ankle does swell frequently, but not as much as it has in the past.

I would have to say that since I have been on the Enbrel the swelling is not

as frequent. It is just painful. My feet are the only parts that are

bothered. Once in a blue moon my hands are affected for a couple days.

The rheumatologist didn't say what she had in mind in regards to the pain.

Just that we might be dealing with something other than erosions or damage

that may be irreversible.

Terri

[ ] Rheumy appt

> Went and saw my rheumy yesterday. This was a 1month follow up after

starting the Arava. My lab tests were fine. I have not had any real

relief that I can tell. My current regime is Enbrel, Arava, and Vioxx.

She (rheumy) is frustrated that I am not responding to the meds. She

wants to give me a full 12 weeks on the Arava before changing to

something else. My main pain is in the right foot and ankle.

>

> The plan: x-rays were taken of the ankle yesterday. Had x-rays on

both feet 6 months or so and that showed erosions in both feet. Now we

are going to look at the ankle and she will have me come back in 2

months and I will see an orthopedic podiatrist to see if there is

anything he can suggest or do (inject the joint, make an orthotic, or

whatever). Then I will see her right after seeing him. My rheumy is

3 - 3 1/2 hours from my house so it is an all day adventure. If the

podiatrist can't do anything or won't inject it the rheumy said she

would. If no change in my symptoms she will drop the Enbrel and put me

on Humira. She is wondering if my pain and discomfort are related to

something else rather than RA.

>

> Sorry to be long, but that is where I am at. After reading all the

posts from everyone I am starting to feel like I know all of you more

and more. Thanks for being a good source of info and love the comics.

What do they say....laughter is the best medicine!!!

>

> Terri

>

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  • 1 month later...
Guest guest

In a message dated 4/8/2003 11:54:11 AM Eastern Standard Time,

celticangyl@... writes:

> . I had a TB test today too, it is a purplish red right

> now..is that normal

I hope it is not a raised reaction. I work for a family practice MD and he has

to measure the reaction with a ruler to see if it is positive. Most of the time

there is now marks if it is negative unless whoever gave you the test had a

heavy hand. I usually give them to our patients.

Janet

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In a message dated 4/9/2003 12:24:13 PM Eastern Daylight Time, fam24@...

writes:

> >. I had a TB test today too, it is a purplish red right

> >now..is that normal

>

> I hope it is not a raised reaction. I work for a family practice MD and he

> has to measure the reaction with a ruler to see if it is positive. Most of

> the time there is now marks if it is negative unless whoever gave you the

> test had a heavy hand. I usually give them to our patients.

> Janet

Red marks the first day are normal. I get a manto every year as I work in a

nursing home...worked 4 years day care before that. ;-) Keep and eye on it.

If you get a reaction in a day or two, that isn't normal.

I've had one false positive so far and that was simple because they did two

mantos when I started work within a week of each other.

Smile,

Becky

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  • 2 years later...

Cassy, when I used to see my former rheumy's Fellows, it seemed that

they spent a lot of time with me, more than the rheumy could. That's

one reason I didn't mind seeing the Fellows. I hate to see a doctor who

seems so rushed that he doesn't have time for me.

When I saw the new rheumy Monday, he spent probably 30 minutes with me.

He asked me about the history of my RA, and gave me a very throough

examination. He even asked me to take off my shoes and socks and

examined my feet. I don't think my rheumys have ever examined my feet

before, since I haven't had any pain there. He seemed to really care,

because he asked if I'd had a flu shot and a pneumonia shot and a TB

test before starting on Enbrel. I don't think he left anything out.

I am so glad that I went to him. A friend of mine recommended him. Good

doctors are hard to find, and we especially need good rheumatologists.

And more of them.

I hope your next visit will go better. And longer.

Sue

On Thursday, December 1, 2005, at 07:41 PM, cnberte wrote:

>

> Well, I had my 2nd rheumy appt yesterday. I was a little surprised

> by the little amount of time that was spent with me. My rheumy's

> Fellow made me feel that based on my lab results I should be feeling

> better.

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Hi Cassy,

how true!!! and so well put.!!!

there time is precious to them but I think they forget just how precious our

lives are to us, and we need to get the most out of them and that means they

need to get it right

cnberte <bertelson@...> wrote:

Hi All,

Well, I had my 2nd rheumy appt yesterday. I was a little surprised

by the little amount of time that was spent with me. My rheumy's

Fellow made me feel that based on my lab results I should be feeling

better. (if anybody thinks I should feel better ITS ME) I went into

some sort of crying episode after my visit which started before I

left the office and continued in the nice chairs out in the hall for

about an hour. I mean really, we wait a long time to see them and

then get

such a small amount of time. I think my bill should be commensurate

with that small amount. I have been getting more and more depressed

over last few weeks which I brought up with the Fellow and he let me

know that he was NOT treating my depression. Well, ok then. I didn't

have depression before I got RA. So there! I could tell they were on

a time crunch and they have answered these question a lot but not for

me and this is the first time I have had RA. I am figuring out which

dr I am supposed to ask for what med. I will ask my GP to check to

see if my antidepressants need adjusting or what is going on with

me. On a positive note all of my labs are normal now and my rheumy

IS fabulous. She was sorry about the appt yesterday, when I called

back today to discuss it and later when her nurse called, I burst

into tears again. My pain is still very significant and I am not

sleeping that well. She has prescribed another round of prednisolone

to see if that helps to help decipher if the pain is related to the

RA or maybe fibromyalgia in addition to it. I have to admit it has

made me feel a little better and for that I am grateful.

I know that medical professionals are busy, with less reimbursements

and the crush of more and more uninsured and underinsured as I work

at the county hospital. They have to see more and more patients to

keep up with the malpractice premiums. I hope I don't make my

patients feel that way and if I do I hope that I will learn another

lesson here (Ra has

been a great educator! LOL) I think I may be a little too far in the

other direction. The tests, the labs, the meds, etc. Grant us all

patience, I don't mind waiting but do want your undivided attention

when it is MY turn. Thanks for letting me vent.

Cassy

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  • 4 months later...
Guest guest

Just got back from rheumy appt. He said my sedrate was 7 and the other test showed inflammation still. So, we were talking about the Orencia and he said that they're having a hard time getting Ohio medicaid to approve and they are even having problems getting it approved for people on Medicare. So, I'm going to give them a call myself (medicaid) and see what needs to be done.. But anyway, he was also talki g about putting me on rituxan.... I would go to the hospital for infusion one week...go back in 2 weeks and then wouldn't have to go back for 8 months.

No blood work done today. I do back in June maybe sooner if Medicaid can answer some of my questions.

Hope you're all having a nice day..it is in the low 70's today!! Yah!!!!

Hugs..paula

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Guest guest

Sometimes the manufacturer has a patient

assistance program that will work with insurance companies and your doctor for

you. They want to sell their medications so they work very hard to get

approval for you. I don’t know about these specific companies but

it’s worth a try. God bless.

From: Rheumatoid Arthritis [mailto:Rheumatoid Arthritis ] On Behalf Of paula delarosa

Sent: Tuesday, April 11, 2006 3:09

PM

Rheumatoid Arthritis

Subject:

Rheumy appt

Just got back

from rheumy appt. He said my sedrate was 7 and the other test

showed inflammation still. So, we were talking about the Orencia and he

said that they're having a hard time getting Ohio medicaid to approve and they are even

having problems getting it approved for people on Medicare. So, I'm

going to give them a call myself (medicaid) and see what needs to be

done.. But anyway, he was also talki g about putting me on

rituxan.... I would go to the hospital for infusion one week...go back

in 2 weeks and then wouldn't have to go back for 8 months.

No blood work

done today. I do back in June maybe sooner if Medicaid can answer some

of my questions.

Hope you're all

having a nice day..it is in the low 70's today!! Yah!!!!

Hugs..paula

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  • 3 years later...

That is great news. Happy kids, happy moms.

Audra

>

>

> Well we made the trip to Kansas City and back again and had a good report from

both the rheumy and opth. Our first appt was with the opthamologist and

Jaye did better with the field vision test

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Veri:

So glad you had a good appointment and that Jaye is finally feeling

better!  The choices for frames are so great there are really cute ones out

there right now.  I find Sam's Club and WalMart have very reasonable prices

for frames. 

Eight is a lot of meds, Hannah takes seven everyday for all her heath issues,

plus Tylenol & Imitrex when needed.  Yes, its a lot, but for the first time

in along time, she feels good.  She has even been dancing without her knee

braces and has very minmal pain.

Beth & Hannah, 13, OA, HMJS, vitamin d defciency, asthma, allergies

 

Beth

" We can't direct the wind, but we can adjust our sails " -author unknown

________________________________

From: " veristroud@... " <veristroud@...>

Sent: Fri, November 20, 2009 7:46:38 PM

Subject: rheumy appt

 

Well we made the trip to Kansas City and back again and had a good report from

both the rheumy and opth. Our first appt was with the opthamologist and

Jaye did better with the field vision test then she has ever done. She has no

inflamation in her eyes and all looks good in that area. She will have to get

glasses now though. We had talked many times that she really wanted to have good

eyesight like her father. But my eye sight is so bad that her chances of having

good eye sight really was not very good. So we will try to find a time within

the next couple of weeks to find frames that she likes and get them ordered.

When we went to the rheumy we had a good visit there also. The only negative

part of that appointment was a comment he made about her meds. As he was looking

over her list of med's, she is on 8 now, he just shook his head and commented

that she sure is on alot of meds. I have had that thought so many times and

wonder am I too aggressive

or over medicating her but then everything seems to be right along the lines

that when we decrease she has problems. One other good thing is that we have

started the taper of her prednisone, YEA! So in four weeks she will not be on it

anymore. They drew labs again and since we saw the neurologist just the week

before I waited to have all the labs drawn at once so that nothing needed to be

duplicated. We had a CBC, BMP, Liver function, Keppra level, Vitamine D level

and not sure what all else they looked for. But both doctors wanted basically

all the same labs with just the neuro needing the keppra level. Anyway I figured

one stick for Jaye was better then two. And these doctors are good to

share all their information. We will have to see where her vit D level is at and

might have to restart that. But one thing at a time. Her joints look good and

the swelling in her angles and feet were much better then six weeks ago. We do

not have to go back for

two months this time. We have made three trips in the last ten weeks. This time

we were n! ot able to stay the night and so the travel up both appointments a

quick trip to the mall for Jaye to get her smoothie and the ride home

wore her out. She was so exhausted that she was not able to get to sleep until

3:30 or 4 a.m. after we got home. She was so exhausted that she was near tears

several times. Needless to say she missed school on Thursday because once she

got to sleep she was not able to get up for school. UGGGH. But today she was

feeling good and back at school. She is tired but still functioning. So, we have

determined that mtx is a good thing for Jaye. The rheumy was impressed

and Jaye loves how she feels most of the time.

Veri & Jaye 15 poly

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