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Hello everyone. I have a question for any of you that are using Celebrex.

I had to stop using Orudis after 10 years because it was causing internal

bleeding. The Dr. started me on Celebrex. Tomorrow will be a full week and

I do not feel any better. Very stiff and a lot of pain. What are some of

your experiences regarding the length of time it took to start working when

you started the medication?

Neil

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I just started this yesterday too, and i am wondering how long its going to

take me to feel better. My dr also upped my mtx from 7.5 injectible to 12mg a

week. I asked him about Arava and Enebrel and he told me both were over a

1000.00 a month, I cant beleive it. The Celebrex is 136.00 at costco. So

unfair : )

Randi

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Hi Randi

I can't help but comment on your statement that your doc's reason for not

putting on Enbrel or Arava was the price tag.

Get a new doctor.

No doubt that price may be a consideration for most of us but if that is the

med of preference then there is a way to get around the price factor. Your

doctor should be your ally in that too.

There are people of both Enbrel and Arava at this time whose insurance pays

for it - but from what I understand ( and this is only through chatting to

people on line) the doctor pushed the insurance company giving reasons of

necessity for the use of the medicatioins. I think for Enbrel you have to

show that you have the Rh factor in your blood before insurance will pay for

the meds.

I do want to say one more thing that I have been hearing about Enbrel.

It has not yet been FDA approved for PA ( it is a go for RA) and you may have

some

trouble getting any serious doctor to put you on it unless you scream that you

want it.

So far a Arava, it has been FDA approved and should be part of your insurance

package.

Also try Arthrotec before you go on Celebrex. Of course Arthrotec is only

Voltarin with cytotec( did I spell that correctly) to protect the tummy.

Hope you get the med that helps sooner than later. I understand that getting

medication quickly is very important for us.

Please excuse errors in spelling.

I really can't be bothered looking over the letter and I am a terrible

typist.( how is that for an excuse for being a poor speller?)

Still would like to hear about someone who is experiencing a very dry mouth

like moi.

I was told that this is one symptom of our disease. Is it?

Please keep in touch so we can all be informed .

There is so much BS out there that the only real pros are people who have

had this disease and survived to tell about it.

So tell.

Kit

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Randi66@... wrote:

>

> From: Randi66@...

>

> I just started this yesterday too, and i am wondering how long its going to

> take me to feel better. My dr also upped my mtx from 7.5 injectible to 12mg a

> week. I asked him about Arava and Enebrel and he told me both were over a

> 1000.00 a month, I cant beleive it. The Celebrex is 136.00 at costco. So

> unfair : )

>

> Randi

Randi, Enbrel is $1000 per month but Arava is not. It is expensive but

not in the Enbrel catagory. If you don't have insurance there are other

ways of getting these drugs cheaper.

Dan

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Hi Kit,

The only insurance I have is medicare( Im on SSI). My dad pays for all my

medications and while he makes loads of money, I think 1,000 a month is a

little too steep. I went from clinirol at 27$ a month to the Celebrex. My Dr

gave me a bottle of 50 pills, but they are 100mg, so I need to take 4 a day.

I want to see if its going to work for me before I buy it. My MTX has not

kicked in yet. My ring finger is so swollen, a size 10 ring does not go over

my knuckle, its so depressing, I look at it and want to cry. My pinkie on the

same hand has been bent for the last 10 yrs. Im considering surgery to

straighten it out. Im 32 yrs old and have had this since Im 21. Anyone

familar with the surgery?

Randi

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Hi Randy

I am so sorry that you are having such a very hard time.

You are so young to be bothered with your health.

More serious however is that fact that you do not have really good medical

coverage which determines what meds you are using. Some docs have really a lot

of info regarding this and you should speak to a clinic if you have one in

your area.

The thing that you may find comforting is that even the most expensive meds do

not work for a lot of people.

And most rheumatologists still stick to the good ole' pyramid of sulfas at the

start, then gold and finally MTX. If you need some prednisone for the pain

then that is a bonus.

So far as I am concerned I would rather stay on the old med unless I have

tried them all and they do not work for me.

You know there is still no reall great studies done on the the long term

affects on all the new drugs that are out.

And while we all offer ourselves as guinea pigs to stop the pain , there is no

guarantee that the new meds are miracle cures for us all.

Well I know one thing . Please write as often and share the ups and downs with

us here.

We all know that our disease is like a teetertotter and one day we are up and

the next five we are low.

Hope you have more highs then lows this week and pain free into the long

awaited spring weather.

By the way how long have you known that you have had PA and how long have you

been on meds?

I too have had my finger very swollen and even changed the size of my ring.

Now I have to change it back because the swelling is gone. But I am not

counting my chickens yet. You said that you pinkie has been bent for 10 years.

Did you see any doctors in all that time? Or are you just seeing someone now.

And have you had a sed test. It really helps to see how bad the inflammation

is in your body so that you can determine what course of action you want to

take.

Getting rid of the inflammation is really important.

But do be aggressive especially if you are so young. This can be arrested( not

totally stopped I am afraid in spite of years of remission in some cases it

does return) but I also know ( from experience unfortunately) that if you do

nothing it can be very pregressive and painful.

I really wish that I could be more helpful to you about the insurance but do

not be afraid to keep asking everyone and anyone. You never know who can give

you some answers to open up a door .

Keep in touch and know you are not alone, and not different from all of us.

Kit

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Hi,

I was diagnosed when I was 21, at first they thought I had gout and some HMO

put me on a high dose of indocin. I got very sick, then my dad took me to a

Rheumy and I was diagnosed with PA. Ive been on naprosyn, Voltarin, clinorol,

and relefin( made me sick) and now the Celebrex. I still cant tell if thats

working. Im also on 12mg of MTX, injection once a week. I have never taken

Prednisone, I dont want to because of the weight gain thing. Im getting the

feeling I need something for the pain. The celebrex does not seem to be

helping. My sed rate is 51. I dont know what that means, if my inflamation

is high or not, it sure looks bad, my fingers look like sausages.

Anyway, I need to find out how to get the medications cheaper, does anyone

know??

Randi

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Dear Randi,

I have sent two notes to the list today - both should help you out with your

medicaton. Depending on your state programs and your income level you may

also qualify for Medicaid that has excellent prescription coverage. Also, if

you have a health plan of your own, see if there is a mail order branch of the

prescription coverage. I use it for my medication. Ordinarily I would pay 20%

at a local pharmacy for Enbrel - that would be about $240 a month. Instead I

use mail order, and I get it for $15. for a three month supply. That saves me

over

$600. every three months.

Being on Predisone when you have psoriatic arthritis is controversial due to

the rebound effects you can have with the psoriasis itself. Not to mention

the effects of long term predisone use - osteoporosis, weight gain, etc...

If you feel that your rheumatologist isn't addressing your pain, I would

recommend a pain management specialist. In our area

there are two anesthesiologists that have

started private practice in this new field.

I found that Troll was very effective on

pain, however it has some side effects that means it can't be taken for more

than a two week period on a daily basis.

When I am in severe flare, I must go to either MS Contin or Duragesic Patch.

I am allergic to codeine, so this rules out Oxycontin, which is a long acting

one like the MSContin, which is morphine base.

Good Luck to you, if you have any specific questions on how these meds are

please feel free to e mail me.

Sincerely,

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  • 3 weeks later...

Kit,

PA is my only illness.

I have only been diagnosed a little over a year and Relafen was the

first NSAID I took and built up an allergy to it so had to be switched

and was put on Celebrex. The transition period seemed to last a week.

During that week I needed less pain med. Don't know why. I have

experienced more swelling since stopping the Relafen and am waiting to

see (knowing Celebrex takes a minimum of five days to kick in) if the

difference in swelling changes.

I was taking two Relafen twice a day and now am taking two Celebrex a

day so it is cheaper for the insurance, I think.

There are many NSAIDS out there but I went into the Docs office and

described the awful gas I had been having and a allergic rash episode I

had and she immediately switched me to Celebrex. I don't know enough to

give an opinion. While I was experiencing the days of lesser pain I

could have praised Celebrex to the heavens above but I, as a quality

control technician, know to wait and see and experiment. The runny eyes

were during that transition phase and they cleared up for 24 hours prior

to the blood vessel popping in my eye. I have never had a blood vessel

pop before this happened. I go back to the Rheumy in April and will need

to make a list of what has been going on so I remember to tell him. The

pain pills or the pain might make me forget to tell him. After driving

an hour to get to his office I don't want to forget. I have not got the

PA under control yet but it is slowly getting better. I am grateful that

I am so much better than I was a year ago when I couldn't drive myself

to the Rheumy's, couldn't open the latches on the dog runs out back, had

to have a bedside table in the bathroom so I could get up off the

toilet....and still worked 40+ hours a week wearing a hard hat and steel

toe boots. The Docs said I had to keep moving so I did. If hubby didn't

feel well the same Doc would give him a note so he could stay home, but

not me. I had to keep moving. Doesn't seem fair. I wonder if I would

have gotten better faster if I had taken a break for a month and

relaxed. I dreaded the weekend though 'cause I stiffened up and hurt. I

dreaded working 'cause I swelled up and stayed swollen. hubby and Mom

took care of the house. I went for months without going to the store or

anywhere except work and the Docs. I saved my energy to get thru the

workday. Now I can do so much more. There a a lot of things I still

can't do and might never do ie. climb rung ladders.

Does any of that make sense?

Pat B

Eufaula, Alabama

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In a message dated 3/5/99, 9:18:37 AM, onelist writes:

<<Does any of that make sense?

Pat B

Eufaula, Alabama >>

May not make sense, but I have similar experiences. I am now pretty religous

about my early morning (before work) 1/2 hour daily walk. When I have to

travel I make it a point to hike around whatever airport I find myself in

between flights. It really seems to help me a lot.

keep on truckin - Rob Glover (Huntsville, AL)

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Hi Pat,

I could ( as we all could I am sure) identify with your PA Blues.

Like you I too had a great deal of swelling and while my pain was never so bad

that I could not drive I had an overall ache that made things very

uncomfortabe for me.

As I wrote before I had effusion after effusion on my knee and it was not

until I took matters into my own hands that I was finally diagnosed two years

later.

What I mean is that the doc , a top rheumatologist ( and a prof) was so slow

in making the diagnosis that my pain got to the point that I went to two other

doctors.

Both recognized that I had PA almost immediately and both suggested immediate

aggressive treatment.

I was put on Arthotec 75 and Sulfasalazene.I got a temperature from the Sulfa

and stopped it after about three days.

So far as the Arthrotec, it took about four months but that too became a

problem but not after my swelling went down. I tolerated it for about 4

months.

What did help and is still doing a really great job is oral gold.

I do not know how long this will keep me as perky as I am now but I do know

that it has made a huge difference.No pain and very very little swelling.

It did take almost three months for it to kick it.

The reason that I waited and persevered is that I really did not want to go up

the medical pyramid to MTX unless I really had to do it.

I do not work and have started to swim twice weekly so that I do something

just for me.

At this time I have regular ( monthly ) blood tests and watch those things

that gold can affect.

Only symptom is small canker sore. It too seems to be getting better.

I have now a very smart rheumatologist but I read and learn more and more

about our disease.

My psoriasis is very mild with just some scaling on my scalp .

I do enjoy reading some of your posting and like you have a sense of humor to

get me through my " worry " days.

Kit

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In a message dated 3/5/99 7:18:36 AM Pacific Standard Time, PBias@...

writes:

> Does any of that make sense?

It certainly does!

Do you do any stretching and range-of-motion exercises. I would think that

those would help to accomplish what your doctor wants to accomplish when he

wants you to " keep moving " , without over doing it. And it might help

especially on the weekends when you stiffen up.

Or, maybe, Celebrex will make everything alright! I certainly wish you the

best of luck.

Rick G (in CA)

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  • 4 months later...
Guest guest

I have tried it without much success, but then I have mainly inflammation of

the tendon sheaths as the cause of my pain, and very little joint destruction

(so far)...my understanding (from my RD) is that it is much more effective for

those with more direct joint involvement.

Mike D

From: " Schroeder " <lschroe3@...>

Kathy Fowkes wanted to know if anyone was taking celebrex and

what they thought about it. I have been on 200 mg., twice a day

since January and love it. All the other meds really upset my

stomach, but the celebrex has not caused me any problems. It is

very expensive though and I am lucky that insurance pays for

almost all of it.

Good luck!

in Poulsbo, WA.

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

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  • 4 weeks later...
Guest guest

Could someone please send me the research trials on Celebrex? sent

the site once but I've lost it. It was a comparison about Celebrex and other

drugs NSAIDS. I'm switching to Celebrex from Indocin and I'm not sure what

the correct dosage should be.

Thanks-

Diane

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Guest guest

Bonnie,

It's actually a good idea to have some sort of nsaid while being on the

AP. From my understanding, the better you can get the joint swelling

down, the easier it is for the Minocin to get through the swelling to

get to the bugs. As for feeling lousy and having to ask for help, I

know just what you mean. I'm a divorced mom of 2 boys and I've had to

ask them to help out so much this last year and it really bugged me to

do that. The funny thing is, I think it made them feel good to help and

it made me realize (again) what great kids I have. So, you're not alone

in needing in help and hopefully as time goes on, you'll start feeling

better and will gain back some independence. In the meantime, don't

beat yourself up about your limitations, just try to accept them, do

what you can and try to be good to yourself. I hope you feel better

soon.

Hugs,

a

Magee wrote:

>

> From: Magee <bondan@...>

>

> Hi Gang

> I read a lot about celebrex and felt that of all the nsaids , it seemed to

> be the safest. But who really knows, it's a realatevaly new drug and so we

> all know that it may be a long time before we know the true effects of it.

> I have been taking celebrex for four months, the pain of the RA is less. I

> don't seem to ache as much and when I'm in a hurx it dosen't seem to work

> although I'm afraid that if I wasn't taking it I would not be able to

> move.I have fewer [i want to die days!] By what I can gather most everyone

> is taking some type of anti -inflamitory along with the AP and frankly I

> didn't want to go that root but if I hadn't I don't think I would be here

> today. Never in my whole life have I experienced such depression and pain

> as I have in this last 9 months. It seems never ending and I pray every

> night first thanking God for getting me through the day and next to take

> away this useless felling I have. I have never depended on anyone since I

> left home. Now I have to ask my kids to help with the house work [they

> don't live at home]. I have to depend on my husband to cover me in the

> middle of the night. I feel like a 100 year old woman and even then their

> more agile than I am. If you haven't noticed I am feeling sorry for myself.

> I am so tired of feeling like this. I want to be able to go back to work

> and I'm so afraid that by the time that happens I'll be to old. Anyway its

> nice to air a little and I know there are people a lot worse off than I am

> and God bless them more than ever. Isn't it amazing how when we were well

> and we saw a person hobbling around and thinking poor soul. Now when I see

> that I'm identifying with them, I can feel their pain and it makes me feel

> phisically sick. Well I should go, have a good evening.

> Bonnie

>

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Dear Bonnie:

I could not have said it better myself - I know exactly how you feel, I can

relate totally and it is very scary. There are days I wish ;;;;;;;;;;;;;;;;

not nice and then I give myself a pep talk and try to go on. There is one

thing that always helps and that is spending time with my two

granddaughters - thank God for them.

I am on a high tonight since I just returned home from babysitting them for

the last three days this week, I was and still am very sore, my wrists are

almost completely deformed and I go around with my Gold Ice Gel, but this is

the big BUT, they tell me they love me as I am and I am still pretty in

their innocent minds. I just loved them so much and now I have concluded

that when I am down and sore, I will need to see them as I need them as much

as they need me. With them the aches are not as pronounced, I seem able to

forget them for a while.

Cheer up my friend, the good days are ahead of us.

Hugs Mado

rheumatic Celebrex

>From: Magee <bondan@...>

>

>Hi Gang

>I read a lot about celebrex and felt that of all the nsaids , it seemed to

>be the safest. But who really knows, it's a realatevaly new drug and so we

>all know that it may be a long time before we know the true effects of it.

>I have been taking celebrex for four months, the pain of the RA is less. I

>don't seem to ache as much and when I'm in a hurx it dosen't seem to work

>although I'm afraid that if I wasn't taking it I would not be able to

>move.I have fewer [i want to die days!] By what I can gather most everyone

>is taking some type of anti -inflamitory along with the AP and frankly I

>didn't want to go that root but if I hadn't I don't think I would be here

>today. Never in my whole life have I experienced such depression and pain

>as I have in this last 9 months. It seems never ending and I pray every

>night first thanking God for getting me through the day and next to take

>away this useless felling I have. I have never depended on anyone since I

>left home. Now I have to ask my kids to help with the house work [they

>don't live at home]. I have to depend on my husband to cover me in the

>middle of the night. I feel like a 100 year old woman and even then their

>more agile than I am. If you haven't noticed I am feeling sorry for myself.

>I am so tired of feeling like this. I want to be able to go back to work

>and I'm so afraid that by the time that happens I'll be to old. Anyway its

>nice to air a little and I know there are people a lot worse off than I am

>and God bless them more than ever. Isn't it amazing how when we were well

>and we saw a person hobbling around and thinking poor soul. Now when I see

>that I'm identifying with them, I can feel their pain and it makes me feel

>phisically sick. Well I should go, have a good evening.

>Bonnie

>

>---------------------------

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Guest guest

In article <3.0.5.32.19990807120648.007bec80@...>, M

Carroll <LCARROLL@...> writes

>because I still have the schedule. Anyway I have been so worked up about it

>that I have gotten a stress ulcer and the internist took me immediatly off

>the Lodine I was taking and put me on celebrex.

Now, now. We don't really want to perpetuate the myth that stress

causes 'peptic' ulcers.

-------

Regards, Dr Graham Chiu

Prospective Internet Observational Study in Arthritis

Home Page http://www.compkarori.com/arthritis/

Contribute at http://www.compkarori.com/arthritis/contrib.htm

Data Entry at http://www.compkarori.com/cgi-local/piosa.cgi

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Guest guest

,

Enjoy the schedule, then put in a claim for your RA, sclero, whatever,

as a job-related injury. It's not quacky, it's not irresponsible and

it's not inappropriate.

When an employer is on notice and they intentionally violate the health

needs of an employee they are knowingly injuring that employee. That is

a tort. A tort is what you might refer to as a civil crime. Tort's

normally carry treble damages, etc. That's why you see such big awards

for just this sort of misbehavior.

Keep a daily log, time stamped if possible (if they use a time clock).

If they don't, by a bunch of postage stamps and mail yourself a copy of

your daily log. DO NOT open these as the USPS becomes your time stamp

and the verification of your word.

--

Geoff Crenshaw -----------------------

Captain Cook's Cruise Center ** Usual Disclaimers **

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

Religion: Man's attempt to discover God

Christianity: God's offer to save humankind

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  • 3 weeks later...

In a message dated 08/28/1999 3:35:00 PM Eastern Daylight Time,

Fltmgt@... writes:

<< Is anyone on the board using celebrex? >>

I was put on Celebrex 5 months ago and I got little or no relief from it.

For me, the best anti-inflammatory is ANSAID...but it is potent and can cause

stomach trouble if you aren't careful.

Annette :)

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--- Fltmgt@... wrote:

[snipped]

> anyone on the board using celebrex? Any side

> effects? What drug did celebrex replace?

Hi --

I am taking Celebrex and I love it. But it is not a

DMARD, a disease-modifying drug. Rather, it is a 2

inhibitor which works to decrease pain. In my case it

replced Indocin, a painkiller which was also doing a

job on my stomach. If the stomach were not an issue

I'd probably still be on Indocin, as it is cheap and

effetive. Celebrex is expensive and effective, and

does not damage one's GI system.

Thanks,

, NJ Highlands

raharris@...

__________________________________________________

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Fltmgt@... wrote:

>

> From: Fltmgt@...

>

> I have had PA for 3 years with both indocin and methotextrate as the drugs

used to date. Both are working and control the PA, although several of my

fingers are swollen and my toes are fused? My rheummy suggested that I should

try celebrex. Is anyone on the board using celebrex? Any side effects? What

drug did celebrex replace?

>

> Thanks for your response?

>

> Thanks.

>

> REGE

> Pittsburgh,Pa

>

> ---------------------------

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As of yesterday, I started adding celebrex to mtx., pred. 10mg., plaquinil,

folic acid. I am waiting for my pred 1mg. to come so I can cut down 1mg. at

a time from 10mg. and prilosac plus zantac. Meantime my index finger is

stiffening up and tender. I know this is peanuts in comparison to most of

you, but wonder if I'm getting ready to travel down the same lane as some of

you. I have been very lucky, and as most say thank God for prednisone, but

not the side effects. Have had bleeding ulcer before and bad gastric

problems, but been good so far on all this stuff. I don't expect any problems

popping up. Just disappointed the finger started while on 10mg. and wanting

to cut down. One day at a time. Have a good wk. end. Betty in Va.

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In a message dated 08/28/1999 11:21:45 PM Eastern Daylight Time,

Bcleary2@... writes:

<< Meantime my index finger is

stiffening up and tender. >>

Betty...my left index finger was the first to freeze. It started by not

wanting to close all the way to make a fist...then just froze that way. I

even noticed strange little indentions at the outer finger joints...as if

something was eroding...accompanied by a build-up of bone-like density

directly next to the indention.

Watch that finger and tell your doc. Having frozen fingers can cause all

sorts of trouble you haven't even thought of. I have trouble holding on to a

bar of soap now to lather my washrag...and picking up a plate with my left

hand is impossible. I have learned to adjust, but it is still very

inconvenient. Watch that finger...for some reason I have read many accounts

like mine that the index is the first to fuse.

Annette :)

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