Rheumy visit

[Guest guest]

Hi !

My husband has had PA for 12 years, and been on MTX for 18 months. He took

a brief break, that is over now. We were told that the tricky part of being

on MTX is that not all liver damage shows up in the blood work. After a

total dosage of 1500 mg, Mark will need a liver biopsy (and I'm assuming

periodically after that). He's taking 1cc every week, and by Christmas will

have taken the total 1500 mg. Take heart, at least they are aware of what

needs to be tested. Just watch your total dosage, and remind your rheumy!

Laurie

[ ] Rheumy visit

>My RD told me a couple of interesting things recently:

>1. People taking MTX for PA have 10 times the risk of liver damage

>compared to RA.

>2. PA is proving to have a markedly different biology to RA, and

>recent research has suggested that it is (I'm trying to remember what

>he said now) (en)capsulitis, affecting the tendons and ligaments, and

>the arthritis is more of a side effect / by-product.

>. (Who was scared shitless of MTX a year ago, and now is very

>pleased to have made its aquaintance ;-))

>

>

>

>

>Please visit our new web page at:

>http://www.wpunj.edu/icip/pa

>

>We are currently discussing new chat times. moderates a chat

on arthritis at

>www.about.com on Thursday evenings, so check that

>out in the meantime! E mail at RA@... for details.

>

>

>

[Guest guest]

Caroline,

Glad to hear you may be on to a new treatment regime. Good luck and

the best of wishes because you deserve just as much as any to find

some sense of good health. I do beleive it is possible. Till soon,

Pattymelt

>

> Hi everyone,

>

> This is Caroline. I just got home from my Rheumatology appointment.

It was overall a very productive appointment.

[Guest guest]

-Hi ,

I am so sorry you had a bad appt. Yep- The Doc was just being a

jerk. Will your GP refer you elsewhere? Is it time to look into

Baylor School of Medicine? I had a nearly identical problem last

Thursday. Mentioned to my Rheumy that my Spodylitis was hurting and

seemed to be flared and she said You don't have any spondylitis. I

pulled out my Mayo reports which just made her mad-she said I can't

take the word of a Mayo Clinic Doctor. ...Wouldn'r x-ray

herself...ETcETC...... I will say some prayers you can find a better

Rheumie.

Take Care!

Marti

[Guest guest]

Marti,

I am going to Baylor. We start our PPO insurance in July so I'll have more

freedom with the medical treatment I get. My GP, chiropractor and pain doc both

looked over my MRI and X-ray reports and all 3 of them said I have definite

inflammation and joint deterioration. Guess we both have really bad luck with

picking out doctors! Hope you get better luck with finding a competent doc too.

take care,

[Guest guest]

--Hi ,

Good luck at Baylor! Ireally hope this new Rheumy will " get It " . I

was thinking they had a big psoriasis treatment center at Baylor.

Maybe they have lots of experience with PA from that? Glad your other

Docs have helped you and you know that you are right in your thinking!

All the Best,

Marti

[Guest guest]

Heidi im happy you are doing better,that is good news ya I want turkey now too lol.Quite a few here have had success with different biologics ane of them being kineret.Actually Kathleen talked about the doctors now thinking Stills is a totally different disease,while we were in Vegas it was a great presentation she did for all of us there.I have never tried Celebrex myself but allot here have also found relief with it im glad you have.Myself I haven't tried a biologic yet not sure about what part of Canada you are from but at least here in Alberta you must fail 3 other drugs before you can get a biologic for Stills.So far im doing really well with the methotextrate and low dose pred ,and the cuts in pred still seem to be going well but then again this time around im cutting awful slow like i said before im not rushing to get off this time.Take care ok. d.Canada

rheumy visit

First of all, a belated Happy Thanksgiving to all our American friends. Our Canadian turkey from Oct. Thanksgiving is a dim memory-time for another, I say.

Today, I went to the rheumatologist. I am doing very well on low doses of Celebrex. The doctor said that the biologics(kin...?) it's in the brochure, are very promising. He went to hear a doctor who thinks that Stills is perhaps not a RA disease at all, but is in a class by itself. He had very promising results with the biologic (the one that starts with the K-sorry, can't think of the name).

I am still in a preliminary diagnosis of stills, although I was able to provide him with photos of the rash I had in May.

I am really interested to see what the cold weather brings-I am typically worse in the cold.

A big thank you to you, Bob for the brochures. The doctor specifically thanked me for them, as he was not aware of the web site. Thanks for mailing them to me on time.

Well, have a good night, all, and take care of yourselves!

Blessings

Heidi

[Guest guest]

Heidi im happy you are doing better,that is good news ya I want turkey now too lol.Quite a few here have had success with different biologics ane of them being kineret.Actually Kathleen talked about the doctors now thinking Stills is a totally different disease,while we were in Vegas it was a great presentation she did for all of us there.I have never tried Celebrex myself but allot here have also found relief with it im glad you have.Myself I haven't tried a biologic yet not sure about what part of Canada you are from but at least here in Alberta you must fail 3 other drugs before you can get a biologic for Stills.So far im doing really well with the methotextrate and low dose pred ,and the cuts in pred still seem to be going well but then again this time around im cutting awful slow like i said before im not rushing to get off this time.Take care ok. d.Canada

rheumy visit

First of all, a belated Happy Thanksgiving to all our American friends. Our Canadian turkey from Oct. Thanksgiving is a dim memory-time for another, I say.

Today, I went to the rheumatologist. I am doing very well on low doses of Celebrex. The doctor said that the biologics(kin...?) it's in the brochure, are very promising. He went to hear a doctor who thinks that Stills is perhaps not a RA disease at all, but is in a class by itself. He had very promising results with the biologic (the one that starts with the K-sorry, can't think of the name).

I am still in a preliminary diagnosis of stills, although I was able to provide him with photos of the rash I had in May.

I am really interested to see what the cold weather brings-I am typically worse in the cold.

A big thank you to you, Bob for the brochures. The doctor specifically thanked me for them, as he was not aware of the web site. Thanks for mailing them to me on time.

Well, have a good night, all, and take care of yourselves!

Blessings

Heidi

[Guest guest]

Dear Heidi, I wanted to say thank you for taking brochures into your doctor. That is how information is shared and more knowledge is learned by many.

I hope your doctor can give you your diagnoses soon. It is real encouraging to hear the Celebrex is helping. Thank you for your well wishes and have a wonderful day yourself. Good to hear from you, till soon. Melt

rheumy visit

First of all, a belated Happy Thanksgiving Today, I went to the rheumatologist. I am doing very well on low doses of Celebrex. The doctor said that the biologics(kin...?) it's in the brochure, are very promising. He went to hear a doctor who thinks that Stills is perhaps not a RA disease at all, but is in a class by itself. He had very promising results with the biologic (the one that starts with the K-sorry, can't think of the name).

I am still in a preliminary diagnosis of stills, although I was able to provide him with photos of the rash I had in May.

A big thank you to you, Bob for the brochures. The doctor specifically thanked me for them, as he was not aware of the web site.

[Guest guest]

Dear Heidi, I wanted to say thank you for taking brochures into your doctor. That is how information is shared and more knowledge is learned by many.

I hope your doctor can give you your diagnoses soon. It is real encouraging to hear the Celebrex is helping. Thank you for your well wishes and have a wonderful day yourself. Good to hear from you, till soon. Melt

rheumy visit

First of all, a belated Happy Thanksgiving Today, I went to the rheumatologist. I am doing very well on low doses of Celebrex. The doctor said that the biologics(kin...?) it's in the brochure, are very promising. He went to hear a doctor who thinks that Stills is perhaps not a RA disease at all, but is in a class by itself. He had very promising results with the biologic (the one that starts with the K-sorry, can't think of the name).

I am still in a preliminary diagnosis of stills, although I was able to provide him with photos of the rash I had in May.

A big thank you to you, Bob for the brochures. The doctor specifically thanked me for them, as he was not aware of the web site.

[Guest guest]

That is very much similar to what I have. Very weak urine stream or

uncontrolled flood. I also have a drop right foot which requires a brace that

keeps it at a right angle. Hope this is all just temporary for you. I have

actually experienced some healing since the nerve damage took place.

Kay

[Guest guest]

In a message dated 4/24/2004 8:10:14 AM Eastern Daylight Time,

Studley@... writes:

Granny, I was reluctant to tell anyone about my last hospital stay but you

just hit a button that set a question in my mind. You may be able to help me..

This past October I drove a 6 hour trip without stopping but only once to

relieve myself. When I arrived to the destination my ankle had begun to swell

and my foot felt like it was going num. I tried to mask the problem because I

was with friends and we were on a trip that would entail plenty of walking.

Within two hours my knee began to ache and within the next hour it began to

swell. As I continued walking my foot began to get num from time to time. Time

went on that evening and the swelling got worse and the pain in the knee also

got worse and soon I could not feel my foot. Later that night It got worse,

ankle and leg swelling, knee very full of fluid and my circulation in my entire

leg from the knee down was not good. I felt like I was going to get a charlie

horse at any time. The trip was a 3 day weekend, needless to say the

following morning we had to go back home because of the pain I had. The only

relief

that I did have was when I elevated my leg above my heart. I could not even

walk at this time.

Got home went to emergency, doctor said it seemed like a classic bloodclot.

I was hospitalized for 7 days. Immediately started on stomach injections.

Started testing, 4 MRI's, one brain scan, 3 ultrasounds, and the dye in the

veins from the foot. Cannot begin to tell you the pain that I went through,

especially With the MRI's.

To lie back to fit in that tube,spasming the whole time. Can anyone imagine!

I am completely fused from the sac. up to the 3rd vertebra in my neck. As I

went down on the table the testers tried to force my neck flat to fit me into

the tube. One very helpful the other was an ass who had no compassion for

someone in pain.

I completed all tests, all negative for a blood clot. Doctors all very

confused. The 6th day in the hospital leg still very swollen, much pain and now

no

feeling in my foot. My Rheumy decided to inject my knee to stop some of the

pain and swelling. finally I had something that did work. Within hours my

leg felt a noticeable improvement.

I was released from the hospital, swelling down, all test negative and still

had no feeling in my foot. I then went to a neurologist, he said that the

only thing that he could see is that I might have a pinched sciatic nerve

causing

the numbness. Nothing definite. None of the doctors could give a definite

diagnosis!

After the hospital stay in October I suffered like never before with a cycle

that was from hell. I didn't think that a human could suffer so much.

Lasting from October till February all day and night. I felt my first sigh of

improvement Feb. 14 each day since then little by little I have felt better and

better. I feel that my body went through so much torture that it is giving me a

period of remission. I certainly hope that it is a very long one.

Today I have my big toe that hurts on the foot that was bad in the hospital.

Thought it was gout but it calluses on the side of the toe I must keep it

bandaged to walk with no pain. I think my foot deformed a bit after that last

flare. I will take this pain in the toe forever as long as I do not have

another flare like that last one.

Thought I would share this experience with you people.

Best wishes and prayers to all of you in this group!

Bob

[Guest guest]

Bob , I was there for many years about 28 years ago and nobody had any idea

what was going on ... This Group with Todays Medicine is a minor Miracle or

maybe just a Miracle when you wonder why and whats going on ...

Good Luck and May God Be With You ... (cause it does matter)

Walter@... essexhaus@...

[Guest guest]

Sorry, Sue! I couldn't help but laugh while reading that.

I'll tell you where to go!

Mayo Clinic in Rochester

http://www.mayoclinic.org/rochester

s Hopkins Medicine

http://www.hopkinsmedicine.org

[ ] Rheumy visit

>

> I went to the new rheumy last week, since my old rheumy relocated. A

> friend who used to go to him had told me that he had about as much

> personality as a wall. I tried to go in with an open mind, ready to

> give him the benefit of the doubt, but after meeting him I must say

> that Dr. Wall would be an appropriate name for him, LOL.

>

> Since I see the rheumy Fellow for most of the visit, and I like him,

> I'll continue to go there for a while anyway.

>

> Sue

[Guest guest]

Sue, how funny:)Tawny

> I went to the new rheumy last week, since my old rheumy relocated.

A

> friend who used to go to him had told me that he had about as much

> personality as a wall. I tried to go in with an open mind, ready to

> give him the benefit of the doubt, but after meeting him I must say

> that Dr. Wall would be an appropriate name for him, LOL.

>

> Since I see the rheumy Fellow for most of the visit, and I like

him,

> I'll continue to go there for a while anyway.

>

> Sue

[Guest guest]

That is great to hear what a good relationship you have with your doctor.

Speaking of this...anyone around NW Arkansas know of any good Rheumatologist??

Please?? I'm on BCBS and need one desperately.

Thanks and God Bless.

marina_troi <marina_troi@...> wrote:

Well, I had my appointment with my rheumy this past friday. I was 3

months late with this appointment because of the pneumonia I had

acquired back in April. Anyway, he is still stumped as to what is

going on with me. It has always been assumed that I have RA. We

are fairly sure that there is Fibro going on and possibly developing

Raynaud's as well. He said he would like me to go get a second

opinion, even though I laugh and tell him that he WAS my second

opinion. I have been with him for a little over 2 years now and he

has been the best thing for me. He says that if he DID send me for

another opinion that the other guy would probably think that HE is

crazy for his treatment plan. So, we decided to forgo the second

opinion. He says that right now the only way to see what is going

on is to stop ALL the medicationa and see what happens. I told him

that I would agree with that option except that on a few occasions

that I was either late getting or forgot all together of taking my

Enbrel and Methotrexate I feel awful and get one major flare that is

extremely difficult to get under control. He said I could have

Lupus, RA, or both.

It is just soooo frustrating. Thankfully, he doesn't want to stop

all my meds. I am sooo greatful for him. He listens to what I have

to say, he treats my pain, he allows me to be an active participant

in the treatment plans. When I hear others in this group talk about

their horror stories with their docs, I just cringe then I thank God

that I found my rheumy. My first rheumy was very much like the ones

described by others. She was worthless!! Then, a friend of mine

told me about her mom's rheumatologist (she has OA) and suggested

him. I talked it over with my orthopedist and he said that he has

only heard of good things from that group and I was sold. I talked

with my orthopedist because another friend had told me about the

first rheumy and I was very disapointed in her.

I feel very fortunate to have the team of docs I currently have.

Not one bad apple in the bunch!! It helps that I work with my

orthopedist and I have known my Ortho Foot and Ankle guy since he

was a med student. So, they know I am not an idiot and that I have

a very strong personality. They allow me some control. My ortho

guy is actually taking charge as my " coordinator " for all my docs.

I see him more often that my PCP and he has a better understanding

of what is happening. He actually offered to do that!! I love

that guy.

Well, now I will get off my soapbox!! Thanks for listening!!

I also wanted to say hello and welcome to all the new people!! I

also want to let everyone know that though I haven't been posting

much, I am still here, in the background, and trying to keep up on

the posts. I have you all in my prayers, as always, and I thank God

every night that I have you in my life. Take care......Marina

[Guest guest]

Hi Marina,

I'm glad that your staying on your meds, and have a great team of

docs. Please, keep us posted Tawny

> Well, I had my appointment with my rheumy this past friday. I was

3

> months late with this appointment because of the pneumonia I had

> acquired back in April. Anyway, he is still stumped as to what is

> going on with me. It has always been assumed that I have RA. We

> are fairly sure that there is Fibro going on and possibly

developing

> Raynaud's as well. He said he would like me to go get a second

> opinion, even though I laugh and tell him that he WAS my second

> opinion. I have been with him for a little over 2 years now and he

> has been the best thing for me. He says that if he DID send me for

> another opinion that the other guy would probably think that HE is

> crazy for his treatment plan. So, we decided to forgo the second

> opinion. He says that right now the only way to see what is going

> on is to stop ALL the medicationa and see what happens. I told him

> that I would agree with that option except that on a few occasions

> that I was either late getting or forgot all together of taking my

> Enbrel and Methotrexate I feel awful and get one major flare that

is

> extremely difficult to get under control. He said I could have

> Lupus, RA, or both.

>

> It is just soooo frustrating. Thankfully, he doesn't want to stop

> all my meds. I am sooo greatful for him. He listens to what I

have

> to say, he treats my pain, he allows me to be an active participant

> in the treatment plans. When I hear others in this group talk

about

> their horror stories with their docs, I just cringe then I thank

God

> that I found my rheumy. My first rheumy was very much like the

ones

> described by others. She was worthless!! Then, a friend of mine

> told me about her mom's rheumatologist (she has OA) and suggested

> him. I talked it over with my orthopedist and he said that he has

> only heard of good things from that group and I was sold. I talked

> with my orthopedist because another friend had told me about the

> first rheumy and I was very disapointed in her.

>

> I feel very fortunate to have the team of docs I currently have.

> Not one bad apple in the bunch!! It helps that I work with my

> orthopedist and I have known my Ortho Foot and Ankle guy since he

> was a med student. So, they know I am not an idiot and that I have

> a very strong personality. They allow me some control. My ortho

> guy is actually taking charge as my " coordinator " for all my docs.

> I see him more often that my PCP and he has a better understanding

> of what is happening. He actually offered to do that!! I love

> that guy.

>

> Well, now I will get off my soapbox!! Thanks for listening!!

>

> I also wanted to say hello and welcome to all the new people!! I

> also want to let everyone know that though I haven't been posting

> much, I am still here, in the background, and trying to keep up on

> the posts. I have you all in my prayers, as always, and I thank

God

> every night that I have you in my life. Take care......Marina

[Guest guest]

Marina,

So glad you're one of the lucky ones to have a good rheumy. I've been

on both sides of the fence and

know what it's like to have both good and bad. I hope yours can figure

out what is going on. Your ortho sounds

like a dream. With a good team, maybe they will all be able to get a

diagnosis.

a

On Jul 14, 2005, at 4:21 PM, marina_troi wrote:

> Well, I had my appointment with my rheumy this past friday.  I was 3

> months late with this appointment because of the pneumonia I had

> acquired back in April.  Anyway, he is still stumped as to what is

> going on with me.  It has always been assumed that I have RA.  We

> are fairly sure that there is Fibro going on and possibly developing

> Raynaud's as well.  He said he would like me to go get a second

> opinion, even though I laugh and tell him that he WAS my second

> opinion.  I have been with him for a little over 2 years now and he

> has been the best thing for me.  He says that if he DID send me for

> another opinion that the other guy would probably think that HE is

> crazy for his treatment plan.  So, we decided to forgo the second

> opinion.  He says that right now the only way to see what is going

> on is to stop ALL the medicationa and see what happens.  I told him

> that I would agree with that option except that on a few occasions

> that I was either late getting or forgot all together of taking my

> Enbrel and Methotrexate I feel awful and get one major flare that is

> extremely difficult to get under control.  He said I could have

> Lupus, RA, or both.

>

> It is just soooo frustrating.  Thankfully, he doesn't want to stop

> all my meds.  I am sooo greatful for him.  He listens to what I have

> to say, he treats my pain, he allows me to be an active participant

> in the treatment plans.  When I hear others in this group talk about

> their horror stories with their docs, I just cringe then I thank God

> that I found my rheumy.  My first rheumy was very much like the ones

> described by others.  She was worthless!!  Then, a friend of mine

> told me about her mom's rheumatologist (she has OA) and suggested

> him.  I talked it over with my orthopedist and he said that he has

> only heard of good things from that group and I was sold.  I talked

> with my orthopedist because another friend had told me about the

> first rheumy and I was very disapointed in her. 

>

> I feel very fortunate to have the team of docs I currently have. 

> Not one bad apple in the bunch!!  It helps that I work with my

> orthopedist and I have known my Ortho Foot and Ankle guy since he

> was a med student.  So, they know I am not an idiot and that I have

> a very strong personality.  They allow me some control.  My ortho

> guy is actually taking charge as my " coordinator " for all my docs. 

> I see him more often that my PCP and he has a better understanding

> of what is happening.  He actually offered to do that!!  I love

> that guy.

>

> Well, now I will get off my soapbox!!  Thanks for listening!!

>

> I also wanted to say hello and welcome to all the new people!!  I

> also want to let everyone know that though I haven't been posting

> much, I am still here, in the background, and trying to keep up on

> the posts.  I have you all in my prayers, as always, and I thank God

> every night that I have you in my life.  Take care......Marina 

>

>

>

>

>

[Guest guest]

I take tylenol once in a while for something, and it does absolutely nothing

for me. It doesn't even work on my headaches. I couldn't imagine having to

take tylenol for RA pain. I take opiates for pain, and sometimes, the pain

is so severe, it will take that along time to work on me.

I hope you start feeling better

-- [ ] Rheumy visit

I saw my rheumy recently. This is the same one that my friend said had

about as much personality as a wall. After seeing him for a few minutes

last time when I saw the Fellow, I agreed that Dr. Wall would be a good

name for him.

I thought that my appointment was with the Fellow again, but he had

already left. He had told me that he might stay on after his fellowship

was over to replace my former wonderful rheumy. The doctor told me that

they begged him to stay, but he took a position back in Kentucky where

he's from. This position requires him to work only four days a week,

and this rheumy sure didn't think much of that. I'm disappointed, too,

because I believe that he will make a good rheumatologist.

But, anyway, this rheumy was quite pleasant and personable. He was

running behind, so I had to wait probably an hour and a half to see

him. But he apologized for the long delay and even explained that it

was due to several factors, one being a patient too sick to be seen in

a short time.

I told him that I had been having pain in my hips and knees, especially

when I'm trying to go to sleep at night. He offered to switch me from

Enbrel to Remicade or Humira. He implied that he could prescribe the

Humira to be injected once a week instead of every two weeks. He told

me to lie on the table; then he took hold of my foot and moved my legs

all about. Of course I was miraculously cured, and I felt no pain at

all. Isn't that always the way of it, the pain leaving when you're at

the doctor's office?

I don't want to be on Remicade, even though he said you didn't have to

be on methotrexate, although my former rheumy said that you do. Since I

live an hour away and my husband has to take me, I don't want to have

to go in for infusions. I'm also not ready to give up on Enbrel, since

it's worked so well for me. I think that the Celebrex is just not

working nearly as well as the Bextra did. He was surprised when I told

him that the Celebrex raises my blood sugar. For that reason, I

wouldn't want to increase it from what I'm taking now, which is 100 mg

twice a day.

So he told me to take, guess what? Tylenol! Arthritis strength Tylenol!

Narcotic drugs would affect my mind or something like that. This was

the only disappointing thing about the visit.

But I'm taking Tylenol at bedtime. And you know what? It doesn't seem

to have an effect on my pain. This I already knew. It doesn't help me

to go to sleep. I take an OTC sleeping pill, and that helps a little

sometimes.

Does anyone else on here take Tylenol, and does it touch your RA pain

at all?

Sue

[Guest guest]

It is so maddening when a doctor won't take your pain

seriously. They need to spend a week in your body.

Has anyone ever had a doctor blackmail you with your

pain meds? My rheumatologist wanted a whole bunch of

labs, which we couldn't afford. We had seen another

rheumatologist for a second opinion and she said that

the labs would be worthless until I was off the

prednisone. We still planned to get the labs, but we

were working with our insurance to find a lab they'd

work with.

In the meantime, I tapered from 15 to 10 mg of

prednisone, and it hit me like a truck. My hands,

hips and shoulder hurt so bad--it felt like someone

was sawing off my limbs. I ran out of

tramadal--tramadal plus Tylenol actually takes the

edge off pretty well, and I wanted to ask the dr if

tapering from 15 to 10 could make me feel this bad. I

called the office and when they returned the call the

nurse said the dr. wouldn't answer any questions I had

or refill my tramadal until they got the results of

the labs. I scrambled to get the labs at the nearest

lab, but still had to spend three days in agony with

NOTHING for pain but Tylenol, which doesn't work as

you say!

We were heading into the weekend and I was really in

despair so my husband went into the drs. office to

explain that if I didn't get some relief soon I was

going to lose my mind. The dr. yelled at him and said

" You people are creeping me out! Never come in here

unannounced. " He did give my husband the prescription

but now I feel awfu about my relationship with the dr.

Unfortunately, he's the only even remotely competent

dr. in my area and on my insurance.

has anyone else had similar experiences? What should

I have done differently? The labs had nothing to do

with whether or not it is safe for me to take

tramadal.

(ilovecats)

--- Sue <marysue@...> wrote:

> I saw my rheumy recently. This is the same one that

> my friend said had

> about as much personality as a wall. After seeing

> him for a few minutes

> last time when I saw the Fellow, I agreed that Dr.

> Wall would be a good

> name for him.

>

> I thought that my appointment was with the Fellow

> again, but he had

> already left. He had told me that he might stay on

> after his fellowship

> was over to replace my former wonderful rheumy. The

> doctor told me that

> they begged him to stay, but he took a position back

> in Kentucky where

> he's from. This position requires him to work only

> four days a week,

> and this rheumy sure didn't think much of that. I'm

> disappointed, too,

> because I believe that he will make a good

> rheumatologist.

>

> But, anyway, this rheumy was quite pleasant and

> personable. He was

> running behind, so I had to wait probably an hour

> and a half to see

> him. But he apologized for the long delay and even

> explained that it

> was due to several factors, one being a patient too

> sick to be seen in

> a short time.

>

> I told him that I had been having pain in my hips

> and knees, especially

> when I'm trying to go to sleep at night. He offered

> to switch me from

> Enbrel to Remicade or Humira. He implied that he

> could prescribe the

> Humira to be injected once a week instead of every

> two weeks. He told

> me to lie on the table; then he took hold of my foot

> and moved my legs

> all about. Of course I was miraculously cured, and I

> felt no pain at

> all. Isn't that always the way of it, the pain

> leaving when you're at

> the doctor's office?

>

> I don't want to be on Remicade, even though he said

> you didn't have to

> be on methotrexate, although my former rheumy said

> that you do. Since I

> live an hour away and my husband has to take me, I

> don't want to have

> to go in for infusions. I'm also not ready to give

> up on Enbrel, since

> it's worked so well for me. I think that the

> Celebrex is just not

> working nearly as well as the Bextra did. He was

> surprised when I told

> him that the Celebrex raises my blood sugar. For

> that reason, I

> wouldn't want to increase it from what I'm taking

> now, which is 100 mg

> twice a day.

>

> So he told me to take, guess what? Tylenol!

> Arthritis strength Tylenol!

> Narcotic drugs would affect my mind or something

> like that. This was

> the only disappointing thing about the visit.

>

> But I'm taking Tylenol at bedtime. And you know

> what? It doesn't seem

> to have an effect on my pain. This I already knew.

> It doesn't help me

> to go to sleep. I take an OTC sleeping pill, and

> that helps a little

> sometimes.

>

> Does anyone else on here take Tylenol, and does it

> touch your RA pain

> at all?

>

> Sue

>

>

>

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

I hope that you have some answers soon. Neither choice is an easy one but you

have to go with was sits best in your heart. Good luck and I pray that she is

in remission and that you will know what is going on soon. Well either that or

that it just goes away and never comes back.

Veri & Jaye 16 poly

Rheumy visit

Lucy saw her rheumy on Thursday. She is still complaining of pain in her

legs and the rheumy says she is baffled because she doesn't see any signs of

inflammation or swelling. She offered me a couple of options. First, she

said that we can try to switch her from Enbrel to Humira and see if Humira

worked better for the pain. Second choice was to take her off of Enbrel and

see is she even has active arthritis going on. I chose the second. It's

summer and she doesn't have much going on. If she flares she can stay home

and rest. Hopefully this will tell us if jra is causing her pain or not.

She is going to an every 10 day dose two times and then every two weeks and

then every three weeks. I would love it if she were in remission, but that

leaves it unanswered as to what is causing her pain.

Amy and Lucy, 7, poly

[Guest guest]

I posted here a few weeks ago for the first time, thank you to all who answered.

I usually just read thru the posts but am going to try to be more active in the

group from now on. I had my first visit with a rheumatologist a couple of weeks

ago. She reviewed blood work and x-rays taken by the Urgentcare facility.

Based on the x-rays and other symptoms she diagnosed RA and more than likely

Lupus. She prescribed Planquinil (sp?) 400 mg a day and Prednisone 5 mg a day

as needed. I've taken Prednisone before don't mind it too much. The Planquinil

kind of scares me I got it filled but have yet to take it, she didn't tell me

anything about it I know it will help but I am afaid of side effects has anyone

taken this and did you tolerate it well? I've read about all I can on it but

need to know from people who have actually taken it. I go back in 6 weeks for

blood tests and follow-up on the meds. She didn't need blood test on first visit

she said the x-rays showed her most everything she needed to know - my hands are

the worst knees and hips show some damage but not as much I guess. I am glad to

finally have a diagnosis after years of problems. On another note I find the

posts regarding childhood abuse and the connection to these types of diseases

interesting, both my sister and I suffered abuse as children and we both have

been diagnosed with fibro., RA, Lupus depression, anxiety etc... we are both

adopted so no blood connection. I guess we could have both inherited these

things from out birth parents and its just a coincidence, but we've always been

curious as to why we have so many of the same problems and we aren't blood

relatives. I guess I need to read more but it does make sense in a way. Thanks

for listening and if anyone could help with the Planqunil side effects I would

appreciate it. I look forward to being a part of your group.

Amy Hill

[Guest guest]

Amy,

In the world of RA drugs, Plaquinil (sp?) is at the base of a growing list

of drugs that can be taken to control this disease. It has been around a

LONG time. You just want to make sure you see your eye doctor now and once

a year and let them know you're on this drug.

I'd be more afraid of the prednisone than any DMARD out there.

in PA

On Tue, Oct 12, 2010 at 1:21 AM, Amy H <lauralynnil40@...> wrote:

>

>

> I posted here a few weeks ago for the first time, thank you to all who

> answered. I usually just read thru the posts but am going to try to be more

> active in the group from now on. I had my first visit with a rheumatologist

> a couple of weeks ago. She reviewed blood work and x-rays taken by the

> Urgentcare facility. Based on the x-rays and other symptoms she diagnosed RA

> and more than likely Lupus. She prescribed Planquinil (sp?) 400 mg a day and

> Prednisone 5 mg a day as needed. I've taken Prednisone before don't mind it

> too much. The Planquinil kind of scares me I got it filled but have yet to

> take it, she didn't tell me anything about it I know it will help but I am

> afaid of side effects has anyone taken this and did you tolerate it well?

> I've read about all I can on it but need to know from people who have

> actually taken it. I go back in 6 weeks for blood tests and follow-up on the

> meds. She didn't need blood test on first visit she said the x-rays showed

> her most everything she needed to know - my hands are the worst knees and

> hips show some damage but not as much I guess. I am glad to finally have a

> diagnosis after years of problems. On another note I find the posts

> regarding childhood abuse and the connection to these types of diseases

> interesting, both my sister and I suffered abuse as children and we both

> have been diagnosed with fibro., RA, Lupus depression, anxiety etc... we are

> both adopted so no blood connection. I guess we could have both inherited

> these things from out birth parents and its just a coincidence, but we've

> always been curious as to why we have so many of the same problems and we

> aren't blood relatives. I guess I need to read more but it does make sense

> in a way. Thanks for listening and if anyone could help with the Planqunil

> side effects I would appreciate it. I look forward to being a part of your

> group.

>

> Amy Hill

>

>

>

[Guest guest]

hi Amy,

been taking plaquinil for over a year , no side effects. i do have

cataracts in both eyes, but i had that before i started the plaquinil.

i'm waiting until after the first of the year to have the surgery

done to remove them, i just dread it.....

betty