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Susie:

I have FMS in addition to my RA. They have given me nothing except darvocet

for the treatment of pain for FMS and RA. That is it. This does not mean

that this medication that he has given you does not work for what he intends.

I take a medication for Parkinsons for my restless legs and I do believe

Trazadone is also used as a seizure medication just as MTX is used in cancer

treatment. Many drugs have different purposes. It still doesn't mean he is

the brightest star in the sky though. Ya know what I mean?

Jeannette

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Jeanette

He said that since I was the ONE out of ONE THOUSAND to get the side

effect of " thinking " I was falling out of bed, and also getting Hives

with NEURONNTIN, that he had something that would work the " same " yet

" different " (another one of those bright stars talking)

He said it is for PAIN. It is called TOPAMAX but has name also

" TOPIRAMATE Capsules " wriitten under it. It is 15 mg.

I looked it up on Internet and it says nothing about being for PAIN. It

is for seizures!

Which on one hand may be beneficial to the Doctor, as I may just fly at

him with a " seizure " alright.

I was mainly curious if anyone on the list with FMS had been given it.

Susie

ednettieolson@... wrote:

> Susie:

>

> What is TOPAMAX suppose to do? Never heard of it.

>

> Jeannette

>

> eGroups Sponsor

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Susie,

I think this anticonvulsant drug has a rather serious side effect that your

physician may not have mentioned. Check this out:

http://neurologychannel.com/NeurologyWorld/cognitive.shtml

----- Original Message -----

From: " Headley " <sheadley@...>

< egroups>

Sent: Friday, December 01, 2000 4:30 PM

Subject: Re: [ ] Pain Med

> Jeanette

> He said that since I was the ONE out of ONE THOUSAND to get the side

> effect of " thinking " I was falling out of bed, and also getting Hives

> with NEURONNTIN, that he had something that would work the " same " yet

> " different " (another one of those bright stars talking)

> He said it is for PAIN. It is called TOPAMAX but has name also

> " TOPIRAMATE Capsules " wriitten under it. It is 15 mg.

> I looked it up on Internet and it says nothing about being for PAIN. It

> is for seizures!

> Which on one hand may be beneficial to the Doctor, as I may just fly at

> him with a " seizure " alright.

> I was mainly curious if anyone on the list with FMS had been given it.

> Susie

> ednettieolson@... wrote:

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I looked at it, and it was very important for me to know this. Thank you

so much .

Susie

Matsumura wrote:

> Susie,

>

> I think this anticonvulsant drug has a rather serious side effect that

> your

> physician may not have mentioned. Check this out:

>

> http://neurologychannel.com/NeurologyWorld/cognitive.shtml

>

>

>

>

> ----- Original Message -----

> From: " Headley " <sheadley@...>

> < egroups>

> Sent: Friday, December 01, 2000 4:30 PM

> Subject: Re: [ ] Pain Med

>

>

> > Jeanette

> > He said that since I was the ONE out of ONE THOUSAND to get the side

>

> > effect of " thinking " I was falling out of bed, and also getting

> Hives

> > with NEURONNTIN, that he had something that would work the " same "

> yet

> > " different " (another one of those bright stars talking)

> > He said it is for PAIN. It is called TOPAMAX but has name also

> > " TOPIRAMATE Capsules " wriitten under it. It is 15 mg.

> > I looked it up on Internet and it says nothing about being for PAIN.

> It

> > is for seizures!

> > Which on one hand may be beneficial to the Doctor, as I may just fly

> at

> > him with a " seizure " alright.

> > I was mainly curious if anyone on the list with FMS had been given

> it.

> > Susie

> > ednettieolson@... wrote:

>

>

>

>

>

>

>

> eGroups Sponsor

[Click Here!]

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

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Hi,

At a fibromyalgia support group I attended, where a specialist in fibro was

the speaker, a young woman spoke of an anti-seizure drug she was on and said

it turned her life around it helped so much. I can't remember the name of

the drug, but the MD speaker said it was the newest way of treating fibro.

This was about one year ago.

Patsy

-----Original Message-----

From: Headley [mailto:sheadley@...]

Sent: Friday, December 01, 2000 2:30 PM

egroups

Subject: Re: [ ] Pain Med

Jeanette

He said that since I was the ONE out of ONE THOUSAND to get the side

effect of " thinking " I was falling out of bed, and also getting Hives

with NEURONNTIN, that he had something that would work the " same " yet

" different " (another one of those bright stars talking)

He said it is for PAIN. It is called TOPAMAX but has name also

" TOPIRAMATE Capsules " wriitten under it. It is 15 mg.

I looked it up on Internet and it says nothing about being for PAIN. It

is for seizures!

Which on one hand may be beneficial to the Doctor, as I may just fly at

him with a " seizure " alright.

I was mainly curious if anyone on the list with FMS had been given it.

Susie

ednettieolson@... wrote:

> Susie:

>

> What is TOPAMAX suppose to do? Never heard of it.

>

> Jeannette

>

> eGroups Sponsor

[Click Here!]

>

> Our websites: http://rheumatoid.arthritis.freehosting.net/

> http://www.rasupport.webprovider.com/

> Change subscription options:

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Susie,

The other's are right in that you need to discuss the med and it's potential

side effects with your doctor. However, before you panic I read both your

message and the site which discussed the study. You are taking 15 mg. of the

Topiramate.

It is called TOPAMAX but has name also

> > " TOPIRAMATE Capsules " wriitten under it. It is 15 mg.

In the study, the participants were taking 300 mg. That is a significant

difference and would also quite possibly mean that someone taking only 15 mg.

would be at considerably less risk for those kinds of side effects.

>>>>18 patients with intractable epilepsy obtained before and after the

initiation of topiramate at a median dose 300 mg.<<

I in no way am saying there is no need to worry; just trying to say before you

panic consider all of the info. Also, a study of only 18 patients is not a very

large study. If I were you, I'd look for other studies as well, hopefully

finding studies involving larger number of patients and control subjects.

Certainly you should also discuss this with your doctor. Perhaps even print it

out for him.

BTW, many anti-seizure medications are used for various types of pain. I take

Neurontin for Peripheral Neuropathy symptoms. I've had to increase the amount

(at my rheumie's advice) to get the maximum benefit. I now take 300 mg 3 times a

day. My symptoms are not completely gone, but certainly I have seen a vast

improvement and is a lot more tolerable.

My advice would be to make sure you have a rheumatologist you are completely

comfortable with, that you feel to be extremely competent, and then to work

closely with that physician. Keeping a journal or at a minimum a running list of

symptoms along with info as to what you had been doing, degree of " restfulness "

or " tiredness " , other health irritants at the time, etc. is also very helpful. A

thorough journal is of immense value to both you and your doctor.

It is amazing when you write everything down and read it quite often what

actually was happening is quite different than you might have summarized it even

that night or the next day. Once we get through an extreme bout of pain we often

tend to minimize it............and over a week or a month I think most of us

actually would report on the low side the severity and frequency of pain and

discomfort.

Keep the journal handy and make even a brief notation every time during the day

that you experience any change in how you feel --- good or bad. The more info

you write down, the more helpful it will be. You can summarize it each day or

once a week or at whatever interval is best for you...........but having that

detailed back-up can be extremely valuable.

This is good to do not only for RA or FM or OA but for any types of health

problems you might have.

Sorry.............I was only going to write about the drug, but then my runny

fingers got carried away and I rambled on and on.

Vegas Elaine

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Hey, Vegas Elaine! Happy you stopped in, and I hope you are doing well.

Although from Susie's post it was unclear how much topiramate total she is

to be taking per day, I agree it is likely to be far less than 300 mg per

day at this time; however, I'm not sure if her doctor instructed her to

start off slowly and eventually reach a higher daily dosage. Of course, my

intent wasn't to put her into a panic, but to encourage her to consider the

possible adverse side effects of this drug.

Unfortunately, this is a new drug. It was only approved in December of 1996,

and there aren't a great number of studies of topiramate completed. Although

I concur that the study I referred to has a very small number of subjects

(and they suffered from epilepsy and not fibromyalgia), the study was

conducted in response to frequent patient complaints of cognitive

dysfunction while taking the drug. At the end of this post, I've included

references to a few other studies I found, including one performed on

healthy subjects. Obviously, because the drug is so new, the long-term

safety is unknown. It was FDA-approved for use in epilepsy. I can't find any

references yet that describe it as proven to be successful in the treatment

of fibromyalgia.

I worry about Susie using this medication because she has tried quite a few

drugs for her fibromyalgia and has experienced many adverse reactions

(including to the drug Neurontin that you mentioned). Not only that, but

topiramate is a new type of anticonvulsant, the exact mechanism of which is

unknown. Too, although the literature seems to indicate that cognitive

dysfunction may be dosage dependent, other troublesome side effects do occur

which are independent of dosage.

http://www.geocities.com/HotSprings/6028/list3.htm#cognitive

http://www.mapoison.org/ctr/9812topiramate.html

http://www.rxlist.com/cgi/generic2/topiram_ad.htm

http://www.rphlink.com/topiramate.html

----- Original Message -----

From: " & Elaine Holder " <demarn@...>

< egroups>

Sent: Saturday, December 02, 2000 5:25 AM

Subject: [ ] re: pain med

> Susie,

>

> The other's are right in that you need to discuss the med and it's

potential side effects with your doctor. However, before you panic I read

both your message and the site which discussed the study. You are taking 15

mg. of the Topiramate.

>

> It is called TOPAMAX but has name also

> > > " TOPIRAMATE Capsules " wriitten under it. It is 15 mg.

>

>

> In the study, the participants were taking 300 mg. That is a significant

difference and would also quite possibly mean that someone taking only 15

mg. would be at considerably less risk for those kinds of side effects.

>

> >>>>18 patients with intractable epilepsy obtained before and after the

initiation of topiramate at a median dose 300 mg.<<

>

> I in no way am saying there is no need to worry; just trying to say before

you panic consider all of the info. Also, a study of only 18 patients is not

a very large study. If I were you, I'd look for other studies as well,

hopefully finding studies involving larger number of patients and control

subjects. Certainly you should also discuss this with your doctor. Perhaps

even print it out for him.

>

>

> BTW, many anti-seizure medications are used for various types of pain. I

take Neurontin for Peripheral Neuropathy symptoms. I've had to increase the

amount (at my rheumie's advice) to get the maximum benefit. I now take 300

mg 3 times a day. My symptoms are not completely gone, but certainly I have

seen a vast improvement and is a lot more tolerable.

>

> My advice would be to make sure you have a rheumatologist you are

completely comfortable with, that you feel to be extremely competent, and

then to work closely with that physician. Keeping a journal or at a minimum

a running list of symptoms along with info as to what you had been doing,

degree of " restfulness " or " tiredness " , other health irritants at the time,

etc. is also very helpful. A thorough journal is of immense value to both

you and your doctor.

>

> It is amazing when you write everything down and read it quite often what

actually was happening is quite different than you might have summarized it

even that night or the next day. Once we get through an extreme bout of pain

we often tend to minimize it............and over a week or a month I think

most of us actually would report on the low side the severity and frequency

of pain and discomfort.

>

> Keep the journal handy and make even a brief notation every time during

the day that you experience any change in how you feel --- good or bad. The

more info you write down, the more helpful it will be. You can summarize it

each day or once a week or at whatever interval is best for

you...........but having that detailed back-up can be extremely valuable.

>

> This is good to do not only for RA or FM or OA but for any types of health

problems you might have.

>

> Sorry.............I was only going to write about the drug, but then my

runny fingers got carried away and I rambled on and on.

>

> Vegas Elaine

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  • 1 year later...

Does anyone have any experience with the pain med Bextra? I am just starting on

it-5 days already- and don't seem to notice a difference?....does it take a few

wees to build up? thanks, sherri

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Hi Sherri,

Sorry I don't know about the pain med,

but I did notice you email, yorkiegal.

Do you have a yorkie? I do and her

name is Abby, she is full grown and

weighs 3.6 lbs, just a wee little one.

She is almost 7 now and just as full

of energy and as ornery as she was when

a puppy.

Joy

----- Original Message -----

From: yorkiegal2002

Rheumatoid Arthritis

Sent: Thursday, October 17, 2002 12:46 AM

Subject: pain med

Does anyone have any experience with the pain med Bextra? I am just starting on it-5 days already- and don't seem to notice a difference?....does it take a few wees to build up? thanks, sherri

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Bextra is not a pain medication....it is an anti-inflammatory and like all anti-inflammatories it takes a while for it to work to its full potential. I have taken Bextra for about two months now and it works as well as any other anti-inflammatory without the stomach problems.

----- Original Message -----

From: yorkiegal2002

Rheumatoid Arthritis

Sent: Wednesday, October 16, 2002 10:46 PM

Subject: pain med

Does anyone have any experience with the pain med Bextra? I am just starting on it-5 days already- and don't seem to notice a difference?....does it take a few wees to build up? thanks, sherri

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  • 7 months later...
Guest guest

Jackie,

I've read that there could be an interaction and that you should tell your

doctor that you're taking it.

a

> I was taking aleve prior to being prescribed methotrexate. I read

> that you shouldn't take it while on mtx? Is this correct? If so,

> what do you take? jackie

>

>

>

>

>

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Guest guest

I believe I read where ASPIRIN decreases the effectiveness of the MTX.

Susie

jkrinhd wrote:

> I was taking aleve prior to being prescribed methotrexate. I read

> that you shouldn't take it while on mtx? Is this correct? If so,

> what do you take? jackie

>

>

>

>

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Guest guest

You should call your doctor and ask about this, Jackie. He/she needs to

know all prescription and OTC medicines and supplements you take.

[ ] Pain med

> I was taking aleve prior to being prescribed methotrexate. I read

> that you shouldn't take it while on mtx? Is this correct? If so,

> what do you take? jackie

>

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