Re: Celebrex....next step?

[Guest guest]

K,

I'm not surprised her thyroid is normal. When I have severe fatigue, the

blood tests for things other than spondyloarthropathy are negative because

the fatigue either co-occurs with a flare of arthritis or precedes it. I

had severe fatigue for 2 years prior to a severe flare of inflammation in

both ankles and knees. Since her inflammation is active, it's almost

certainly the spondlyoarthritis.

The Celebrex does nothing to affect the disease process or fatigue. It only

relieves some symptoms. She should be on disease modifying antirheumatic

drugs. Enbrel has been shown to be the best for spondyloarthropathies.

Please let us know what happens.

God Bless,

Janet in SF

ReA since 1973; diagnosed 1997; HLA-B27+

[Guest guest]

Hi K.,

My name is Dean, I too have Undiff.I have read your posts for some time with

great interest, both in your daughters good times and of course the others. I

personally have had a lot of spinal problems before I got to the Spondy fun,

three laminectomies, last one with a fusion. I currently have new bulges above

the fusion. My first separate problems began with the heels. I got the

Orthodics, wore the boot to stretch the tendon, had ultra sound, normal routine.

Next was sausage fingers, finally got past that. I seem to be ever chasing

inflammation around my body. At some time or another it is everywhere, today is

shoulder, neck, hip, hands and calves. I am taking Vioxx, 25mg ( I tried 50 for

two weeks), Folic acid, Methotrexate 15mg, and I have been on Enbrel four for

weeks. I have done all the nsaids, Vicodin ( which I hated,zombie!!!)I am

HLA-B27 positive and am 61 yo. I seem to get feverish at times and have

experienced a lot of the things discuss through the group, with some things that

may be just me. I wish Adrienne all the best, and God's speed. I am not sure at

this point if Enbrel is doing anything for me. If not I may lobby for the Humira

that Connie talks of.

Take care,

Dean!!!!!!!

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[Guest guest]

I haven't been reading up to date lately so I don't know if others have

responded to you about Adrienne's current situation.

I have gone through these times when one NSAID has outlived it's usefullness

and finding what works is just another situation where the doc and I have to

try through trial and error to find a working drug or combination of drugs.

I have been around with these diagnoses and NSAIDs enough to run out of the

possibilites and ahve found that often when returning to a drug that worked

before and 'wore out', we find that going back to it works the second time

around. Naprosyn worked great for me for years. When it wore out, I wondered

through a maze of other NSAIDs and some worked for a while and some caused

side effects, but right now, I'm back to just using OTC Aleve. Though I am

on opiates for pain control, I realized that when I took the Aleve for

something else I was more flexible. Now I try not to be without it. Plus the

price is right for generic aleve--I have found it $3 for 50 tablets. I take

on in the morning and 2 at night. My current doc is OK with whatever I find

that works for me. So while I am not running any races or a contestant in

any physical contests, I am doing 'OK' Of course I'd always prefer to be

doing better, but then I remembe the days when I coudl't get out of bed, the

way you say your daughter is now and I feel so much better about where I am.

I hope that her search for a medication to get her going again isn't a long

one. From my experience, if there was a med which helped her for a long

period of time and 'wore out' I think I'd ask her doc if he thinks she might

be responsive to that drug again. Just a thought.

Please let us hear how she is doing. I hope it won't take long to get her

going again.

/MI

AS, FMS, DDD, anemia,etc.,etc.all of which makes me lethargic as a bear in

hibernation

[Guest guest]

K. and : Most of us, who have had the disease over decades....have had

much the same experience dealing with our medicines. Our body might be dealing

with more inflammation at times or we just might be dealing with a disease

that is progressively advancing. NSAID aren't the type of drugs that our body

" gets used to " . NSAID aren't like narcotics, DMARDs, etc., which do allow our

bodies to " get used to " . However, some NSAID are " more potent " than others.

Indicin is one of them. Also, they find that one NSAID works better on one

person

than it does on another. That is why many of us have tried several or many of

them before finding one that seems to work the best. The normal additions of

medicines to fight this are pretty common, although some can be quite

individualized for different reasons and symptoms. Spondylitis Ass. has a list

of meds

in their normal progression of order. Most doctor's will not jump right in with

the full guns of DMARDS, like Methotrexate or the TNF-a (there are three

major ones, to date....Remicade, Enbrel, Humira) until other medicines have been

tried and failed. In most of the literature, Methotrexate is tried before anti

TNF. All of the TNF-a drugs have about the same percent rate for good results

on " moderate to severe " disease patients. They haven't discovered one is

better than another, just that one may be easier to give than another. It is

also

possible that one person may respond to one drug better than another drug. Some

people have good results in just a few days after 1st infusion or shot,

others take 6 months to see results. It does not cure our disease. In the list

of

meds that the SAA mentions, they left out the DMARD Plaquenil, which might help

some people...mostly those with eye problems, IBD, and or psoriasis. For most

people, it is added before they try Methotrexate. It has less side effects.

Each progression of drugs...generally carry more side effects...that is the

reason they try other things first. There are exceptions....and we have seen

from

our group, that some people, even with their first flare...need more guns to

fight their disease than others. However, this is rare. Hope this will help.

Best regards, Connie (granny)

<A HREF= " http://www.spondylitis.org/about/reactive/medications.aspx " >About /

Reactive / Medications</A>

[Guest guest]

Please use caution with Adrienne taking that much Celebrex. My daughter, 21 at

the time, was taking a double dose of Celebrex for a herniated disc in her back.

She developed high blood pressure and asthma. We did not realize at the time it

was due to the Celebrex. When she stopped the Celebrex she no longer had high

blood pressure or asthma.

Celebrex....next step?

She is currently taking 200 celebrex morning and night...up from her 200

daily for the past three years.

[Guest guest]

Thank you for information! I greatly appreciate it. I have forwarded info

on to Adrienne. She cannot be seen by any of her doctors that help with

arthritis and pain until Dec 4th...ugh... sure the pits when a doctor takes a

whole

week off for Thanksgiving and then closes for two weeks to move the office...

Ugh! (I am only kidding about taking the time off, this doctor deserves as

much vacation time as she would like, she is Wonderful! Just makes getting in

to see her more challenging)

Meanwhile we are anxious to learn more of what is going on with her leg/ankle

from the second MRI she has scheduled for Tuesday.

Thank you for the Blood Pressure tip... I asked Adrienne to please be sure to

have her BP checked when she sees her Ortho on Tuesday.

I too appreciate the BP tip. I have been put on the 200 celebrex twice a

day because I had surgery on Nov 5, hysterectomy. Then I had surgery again on

the 9th, emergency surgery for internal hemmoraging.I can honestly say I was

the most scared I have ever been in my life that time. I didn't know if I would

make it or not. Thank G-d I didn't crash until I was in the ER and already

had one IV in and second IV going in. It was a very scary time. I thank G-d I

woke when I did... 10 or 20 minutes later and I probably would not be here

writing this today.

Anyway, I am not up a lot, I try to check emails as I can. But will be sort

of limiting my time online and sitting in a chair until I am feeling a bit

better.

Thank you for the input from all! I Greatlly appreciate it! I will keep you

posted both for the ankle/leg finding and the appointment for Dec 4.

This is the BEST list!! It is SO wonderful to be able to post a question and

learn of others experience and advise and ideas and suggestions!

Thank You!

K

Adrienne's Mom

[Guest guest]

In a message dated 11/16/2003 1:41:21 AM Eastern Standard Time,

Firstwifek@... writes:

> I have been put on the 200 celebrex twice a

> day because I had surgery on Nov 5, hysterectomy. Then I had surgery again

> on

> the 9th, emergency surgery for internal hemmoraging

K, when ever I had surgery, they always took me off NSAID. Do you think the

bleeding was from the Celebrex? Glad you made it okay. Hope you are up and

about real soon. Best regards, Connie

[Guest guest]

In a message dated 11/16/2003 6:54:19 AM Pacific Standard Time,

Grannyof9@... writes:

Do you think the

bleeding was from the Celebrex?

No, actually I was put on the Celebrex after the second surgery. But it

didn't help me any that I had been taking 800 mg of IBU 3 times a day since the

first surgery. I had been taken off all meds that might cause any thining prior

to the first surgery. But had not been planning on a second surgery. The

doctor thought maybe the celebrex would be a better alternative after the second

surgery.

I am feeling better each day. But am trying to take it really easy for a

while.

Thank you Connie for your note.

K

[Guest guest]

As her MD probably knows Celebrex has been used at higher doses and used for

a condition called FAP ... Familial Adenomous Polypitopus (Sp?) for much

higher doses, so 200 B.I.D. should be safe. Like any of the NSAIDs higher doses

are sometimes required as the body adapts to that NSAID. That is also why

switching NSAIDS is sometimes useful. Bextra is a COX 2, sulfonamide

anti-inflammatory like Celebrex, accept that in some studies it has been even

more

efficacious and can be a more powerful pain drug.

Dave in NC

In a message dated 11/14/2003 2:52:18 AM Eastern Standard Time,

Firstwifek@... writes:

> Hi all,

> I have a question. Adrienne is suffering terribly with tremendous pain both

>

> joint and soft tissue, as well as extreme fatigue...so much so she cannot

> get

> out of bed some days. She just had her thyroid levels tested again and

> everything there is 'perfect'...which is really frustrating for her. She

> was

> hopeful something was out of whack so there could be a fix.

> She is currently taking 200 celebrex morning and night...up from her 200

> daily for the past three years.

> I am wondering... could her body be no longer responding to Celebrex...and

> if

> so...What is the Next level to move to?

> Thank you for your suggestions!

> K

> Adrienne's Mom

> Adrienne now 20 years old... UW student with 18 credits... and 2 early

> Morning classes....Undiff Spondy, Hypothyroid, fibromyalgia, chronic fatigue

>

> and...currently something going on on her ankle/leg. In a walking cast for

> the past

> 4 weeks with no improvement. MRI is showing fluid... going back for 2nd to

> determine if the fluid is on the bone or in the tendon...

>

>

>

[Guest guest]

Dean,

I will tell you that for me I had to be on Enbrel about 6 months to

experience the full improvement. I still have a lot of problems, but Enbrel

definitely helps. I think that for those of us who've had spondy. for a lot

of years, it takes more time for the Enbrel to work. The only thing it did

fast was it cured my mouth sores (canker sores) after 2 weeks and they've

never come back. But, improvement in my joints took about 6 months.

Janet in SF

ReA since 1973; diagnosed 1997; HLA-B27+

[Guest guest]

Janet,

Thanks for your words of encouragement. I will hang in there. It seems that I

have been on one long flare. I still move about and go to work, but the pain

keeps on. Ha, nobody said that this world was easy. I'm sure that in a hundred

years, I won't remember any of this.

Take care,

Dean!!!

[Guest guest]

In a message dated 11/19/03 1:40:18 AM, deano7777@... writes:

<< I'm sure that in a hundred years, I won't remember any of this. >>

Dean,

Hahahaha good one! I gotta remember that line. Harv in Michigan