Guest guest Posted December 1, 2000 Report Share Posted December 1, 2000 Susie: What is TOPAMAX suppose to do? Never heard of it. Jeannette Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2000 Report Share Posted December 1, 2000 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2000 Report Share Posted December 1, 2000 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: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2000 Report Share Posted December 1, 2000 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: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 1, 2000 Report Share Posted December 1, 2000 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: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2000 Report Share Posted December 2, 2000 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: Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 2, 2000 Report Share Posted December 2, 2000 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 3, 2000 Report Share Posted December 3, 2000 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 17, 2002 Report Share Posted October 17, 2002 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 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 > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 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 > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 i was told all i can take is tylenol. kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 20, 2003 Report Share Posted May 20, 2003 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 > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.