Bextra question..and some other stuff too.

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Mary - 21 Apr 2004 16:00 GMT

I 7 days ago I started taking 20mg of Bextra each morning to help with
some severe joint pain that I have been experiencing over the past 3
weeks. When I filled the prescription, the pharmacist told me that it
would take a 4-5 days for the medication to begin to work. I am still
not experiencing any real relief from the pain. I am not having any
luck finding much information about a delayed response with this drug
and am hoping that some others here can provide some insight.

And another issue...
The join pain I have is in my knees, elbows, hands, wrists, ankles and
feet. The some level of pain ans stiffness exisits in all of those
places but will usually be greater in one or two areas at any one
time. Those joints then become very painful and stiff and even feel
swollen and warm to the touch. I have been told in the past that
these joint problems are most likely a form of arthritis that is
associated with my Crohn's disease. However, I am not experencing any
intestingal problems, as that disease is being well managed by weekly
methotrexate shots and Remicade infusions every 4 weeks. The join
pain does seem to cycle with the Remicade, becoming most intense the
week before my infusion is due. Prior to takign Remicade, joint pain
was infrequent ( occuring for a few weeks, every 2-3 years) and more a
nuisance than an issue. But now its darned near debilitating (at
least a week out of each month with pain that prevents me from doing
daily activities).

So I guess I have two more questions:

1. Anyone else here have arthritis associated with inflammatory bowel
disease? I can't find much information about this except that it
happens (and a general attitude by my doctors that its just one of the
many joys of having Crohns disease, so I should suck it up), so I
would love some insight from others.

2. Does anyone taking Remicade expereince similar cycles of joint
pain that aligns with their infusion schedules? Did the pain/cycle
become worse after taking Remicade?

Thanks for any input. I'm having a hard time finding information, so
any links, advice would be greating appriciated.

Mary

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Mary - 21 Apr 2004 22:44 GMT

>I 7 days ago I started taking 20mg of Bextra each morning to help with
>some severe joint pain that I have been experiencing over the past 3
[quoted text clipped - 3 lines]
>luck finding much information about a delayed response with this drug
>and am hoping that some others here can provide some insight.

I tried Bextra -- free samples -- for two weeks, and not only was it
not useful, I swear I was worse after two weeks of Bextra than I was
after two weeks of *nothing*. I hate it.
-
Mary MacT
http://www.alamedacreek.net

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Caroline Marold - 22 Apr 2004 04:48 GMT

Are you really having your Remicade every 4 weeks? Mine are at every six
weeks but most are at every 8 weeks.
Duckie

> I 7 days ago I started taking 20mg of Bextra each morning to help with
> some severe joint pain that I have been experiencing over the past 3
[quoted text clipped - 37 lines]
>
> Mary

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Mary - 23 Apr 2004 00:09 GMT

> Are you really having your Remicade every 4 weeks? Mine are at every six
> weeks but most are at every 8 weeks.
> Duckie

Yes, I really take Remicade every four weeks. But remember, I take it
four Crohn's Disease, not RA, so I think the dosing is different.
When I started it, we tried it at 8 weeks, but I flared after 6. So
we went to 6 weeks, and after a few months, I started to flare at 4.
I've been at 4 weeks now for about 6 months. It works wonders for my
Crohn's and I generally go simpton free. The joint pain is a new
thing as of the past few infusions.

I had an infusion this morning which was a nightmare in every possible
way. Once in the past I had a slight allergic reaction (hives) but
after some better pre-medication and upon the addition of
Methotrexate, that problem appeared to have stopped. Today I had a
very bad reaction and had great trouble breathing. That had to stop
the infusion and treat me we solumedrol and benadryl to get my
breathing back to normal. We were able to finish the infusion after
that, but the whole thing was pretty scary. Thank god for the wonder
medical staff that was it kept the situation under control, kept me
calm AND managed to get me my medicine safely. But now I'm feeling
like heck..tired and hedachey. But I don't know how much that is the
stress of the events, the meds or all my crying.

The other bad event was that the nurses made a point to speak to the
Remicade representative about my joint problems. He says that while
its not unusual to see folks taking Remicade for Crohn's to develop
joint pain, it appears that its not the medicine causing it but rather
RA that has never become active before...appearntly the belief is that
the Remicade triggers is somehow. The nurse thinks that fact, combined
with the predisposition for folks with auto-immune diseases to have
multiple auto-immune diseases, makes it highly likely that I have RA.

So now it seems I have both Crohn's and RA. Its not been a happy day
to say the least. I'm trying to keep my hopes up for a better
diagnosis when I see the Rhumatologist in a few weeks. Buts its not
easy.

I guess if I can try to find some bright spot here its that todays
treatment has significantly improved my joint pain...I just hope it
lasts for more than a week this time.

Thanks for letting me vent..I don't quite know how to talk to anyone
about this yet, but typing it all out somehow makes me feel a bit
better.

Mare

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Caroline Marold - 23 Apr 2004 04:13 GMT

Wow, scary day for you. Boy if they was that kind of reaction at the
spot where I have mine, the nurses would have stopped it and never
resumed it. Hope that you don't have another reaction.
Writing things down does help doesn't it. Seems to make my mind focus a
bit better.
Vent away, vent anytime you need to. We will be here.
Duckie

> Yes, I really take Remicade every four weeks. But remember, I take it
> four Crohn's Disease, not RA, so I think the dosing is different.
[quoted text clipped - 40 lines]
>
> Mare

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Norman Lampert - 22 Apr 2004 05:45 GMT

I have AS and some osteo- and am currently on Bextra 10mg twice a
day, Sulfasalazine 500mg. twice a day and Ultram 50mg. 2 to 3
times a day "as needed" (usually 2 times a day).

This works for me, BUT...
each person is different and you can bet that what works for one
person will do nothing for someone else and will cause problems
for a third person.

Medicines are sometimes affected by OTHER medicines, by what you
eat, by your own body chemistry and responses and by a bunch of
other things. That's why you need GOOD doctors who will work with
you and listen to what you say.

I also have IBS (which the sulfasalazine seems to help) and
Sjogren's which are (probably) related to the AS as well as
allergies, asthma some cardiomyopathy and a leaky aortic valve.
Luckily, none of these are nearly as bad as they could be, but
the allergies and asthma have plagues me all of my life.

I'm lucky to have good doctors who will talk to each other and
(when I remind them) send lab results to each other. They also
seem to have good opinions of each other's abilities.

Make a list of things you want to tell your doctors, print it out
and give a copy to each of your doctors tell them that you need
help. Also, ask them where you can get more information so that
you have a better understanding of what you are facing. Most
doctors want patients to understand their situation and will try
to help.

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"One of the most striking differences between a cat
and a lie is that a cat only has nine lives."
Puddinhead Wilson's Calendar
(Mark Twain)
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mr(dot)bones(at)att(dot)net

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