Rem4
10-01-2007, 01:49 AM
Hello everyone,
I was just diagnosed with MS, and I am overwhelmed with all the information. I had so many symptoms but never suspected MS. I was in complete denial.
My doctor gave me the choice to choose a treatment between Avonex and Copaxone, I wanted Avonex but my insurance denied it and instead approved Rebif or Copaxone. I was wondering if anyone in this forum is on Copaxone as I am leaning more towards Copaxone, (no flu symptoms, no liver or blood cell warning etc) I travel a lot and thought that the once a week will be perfect but as my insurance does not approve it, I need some help with the decision.
Thanks in advance
I was just diagnosed with MS, and I am overwhelmed with all the information. I had so many symptoms but never suspected MS. I was in complete denial.
My doctor gave me the choice to choose a treatment between Avonex and Copaxone, I wanted Avonex but my insurance denied it and instead approved Rebif or Copaxone. I was wondering if anyone in this forum is on Copaxone as I am leaning more towards Copaxone, (no flu symptoms, no liver or blood cell warning etc) I travel a lot and thought that the once a week will be perfect but as my insurance does not approve it, I need some help with the decision.
Thanks in advance
Sponsor
parisiancat
10-01-2007, 05:11 AM
Hi Rem,
I too had a lot of symptoms but never believed it could be MS so my dx was a shock.
Seven months on and I think it's still sinking in.
I'm not on any medication, so I can't give you advice on that, but if you do a search on this board for each of the drugs you'll find tons of information.
What I can tell you is to relax and take it slow. You sound like you're panicing. Don't feel pressured into picking one. Read all the info and choose one when you're comfortable.
And welcome to the board! Post any questions - you'll get lots of advice and support here.
Cat :wave:
I too had a lot of symptoms but never believed it could be MS so my dx was a shock.
Seven months on and I think it's still sinking in.
I'm not on any medication, so I can't give you advice on that, but if you do a search on this board for each of the drugs you'll find tons of information.
What I can tell you is to relax and take it slow. You sound like you're panicing. Don't feel pressured into picking one. Read all the info and choose one when you're comfortable.
And welcome to the board! Post any questions - you'll get lots of advice and support here.
Cat :wave:
kimpossible67
10-01-2007, 06:58 AM
I had site reactions with Copaxone and had to stop it after only 5 weeks. Months later, the lumps and bruises are still there. A friend with MS also had to stop Copaxone for the same reasons except on her skin, they became like divets.
I was on Avonex for 2 months, the flu wasn't that bad but the depression was.
Good luck with your decision, I've heard good things about Rebif.
I was on Avonex for 2 months, the flu wasn't that bad but the depression was.
Good luck with your decision, I've heard good things about Rebif.
MSNik
10-01-2007, 09:20 AM
Hi just to let you know, Im on Rebif..and LOVE IT. its only 3 days a week, and because the injections are subcutaneous (beneathe the skin, not into the muscle) the needle is SO small and I hardly feel it. Also, you should know that Rebif and Avonex are the same drug.....the difference is, REbif is given 3 times a week, instead of once a week and the benefit of that is that the medicine stays in your bloodstream at a more consistent rate, never really dropping, never giving your body that "I need a shot" feeling. I also will report to you that the flu like symtoms only lasted 3 months, only last 4-6 hours the day of the shot, then disappear entirely....
After one year on Rebif (last month) I had my yearly MRIs and can report that no new lesions have appeared, and my MS is stable at this time...Rebif is doing what its supposed to do.
SOrry to hear you joined the MS club...but you will be fine. We are all struggling with some setbacks and getting used to the disease, however its not the end of the world.
Let us know if we can help you in other ways.
MSNik
After one year on Rebif (last month) I had my yearly MRIs and can report that no new lesions have appeared, and my MS is stable at this time...Rebif is doing what its supposed to do.
SOrry to hear you joined the MS club...but you will be fine. We are all struggling with some setbacks and getting used to the disease, however its not the end of the world.
Let us know if we can help you in other ways.
MSNik
MSJayhawk
10-01-2007, 11:46 AM
Hello everyone,
I was just diagnosed with MS, and I am overwhelmed with all the information. I had so many symptoms but never suspected MS. I was in complete denial.
My doctor gave me the choice to choose a treatment between Avonex and Copaxone, I wanted Avonex but my insurance denied it and instead approved Rebif or Copaxone. I was wondering if anyone in this forum is on Copaxone as I am leaning more towards Copaxone, (no flu symptoms, no liver or blood cell warning etc) I travel a lot and thought that the once a week will be perfect but as my insurance does not approve it, I need some help with the decision.
Thanks in advance
I do not take any meds, but if you travel a lot, please make sure you have all your documentation in place- prescriptions, etc. I wear a medical bracelet to indicate my condition and the fact that no meds are taken. If your travel takes you overseas, please note that some countries will limit what you can bring with you. If you are carrying prescriptions, this makes you a bigger target for thieves. If you travel a lot, you might need to slow your life down a bit for your body to recover and stay healthy.
If your doctor insists on Avonex and you want to take meds, the doctor can get the insurance to cover it if your doctor explains the reasoning for it.
I was just diagnosed with MS, and I am overwhelmed with all the information. I had so many symptoms but never suspected MS. I was in complete denial.
My doctor gave me the choice to choose a treatment between Avonex and Copaxone, I wanted Avonex but my insurance denied it and instead approved Rebif or Copaxone. I was wondering if anyone in this forum is on Copaxone as I am leaning more towards Copaxone, (no flu symptoms, no liver or blood cell warning etc) I travel a lot and thought that the once a week will be perfect but as my insurance does not approve it, I need some help with the decision.
Thanks in advance
I do not take any meds, but if you travel a lot, please make sure you have all your documentation in place- prescriptions, etc. I wear a medical bracelet to indicate my condition and the fact that no meds are taken. If your travel takes you overseas, please note that some countries will limit what you can bring with you. If you are carrying prescriptions, this makes you a bigger target for thieves. If you travel a lot, you might need to slow your life down a bit for your body to recover and stay healthy.
If your doctor insists on Avonex and you want to take meds, the doctor can get the insurance to cover it if your doctor explains the reasoning for it.
Rem4
10-01-2007, 12:12 PM
Thank you all who answered me, I am glad I found this board.
I still have million of questions, how come some of you are not taking the meds? is it personal decision? does the med help with symptoms? Or just slow the progress of MS? I have so many symptoms do they ever go away?
would love to hear your comments.
Thanks
I still have million of questions, how come some of you are not taking the meds? is it personal decision? does the med help with symptoms? Or just slow the progress of MS? I have so many symptoms do they ever go away?
would love to hear your comments.
Thanks
mitch512u
10-01-2007, 12:29 PM
The meds, Rebif, Avonex, Copaxone, etc. are designed to slow the progression of the disease. There are other med's to treat the symptoms. I am fortunate in that my symptoms are rather mild compared to others on this board. Be sure to post any questions regarding your specific symptoms so that those of us here who have similar issues can give you the benefit of our experiences. Indeed, the decision to start the medication is a serious one and very personal. Don't feel pressured by anyone, including your doctor, it is YOUR choice. You are among friends here. :) Mitch
MSJayhawk
10-01-2007, 12:36 PM
Thank you all who answered me, I am glad I found this board.
I still have million of questions, how come some of you are not taking the meds? is it personal decision? does the med help with symptoms? Or just slow the progress of MS? I have so many symptoms do they ever go away?
would love to hear your comments.
Thanks
I was diagnosed in 1982. I did not want to take steroids due to their side effects. My doctor told me that my body would, on it own, heal. He warned me to eat right, get sufficient rest, and to avoid stress. I enjoyed 18 years of remission and when my remission ended in 2002, my MS was Primary Progressive MS or PPMS. There is no medication for PPMS at this time. I continue to watch for triggers (things that cause flare-ups), limit my stress, eat right, and get my rest.
What you do with your body is indeed your personal choice. I chose to be medication free. What you should do is to read all the medication literature, ask your doctor, and check out case studies of long-term medication use. That way, when you make your decision, you will have made a fully informed decision for yourself.
I still have million of questions, how come some of you are not taking the meds? is it personal decision? does the med help with symptoms? Or just slow the progress of MS? I have so many symptoms do they ever go away?
would love to hear your comments.
Thanks
I was diagnosed in 1982. I did not want to take steroids due to their side effects. My doctor told me that my body would, on it own, heal. He warned me to eat right, get sufficient rest, and to avoid stress. I enjoyed 18 years of remission and when my remission ended in 2002, my MS was Primary Progressive MS or PPMS. There is no medication for PPMS at this time. I continue to watch for triggers (things that cause flare-ups), limit my stress, eat right, and get my rest.
What you do with your body is indeed your personal choice. I chose to be medication free. What you should do is to read all the medication literature, ask your doctor, and check out case studies of long-term medication use. That way, when you make your decision, you will have made a fully informed decision for yourself.
Hanksmom123
10-01-2007, 02:09 PM
Hi,
I was just diagnosed in April. I am on Betaseron, which is an every other day shot. The good thing about Betaseron is that since you travel a lot you don't have to refrigerate it. It comes in a package and you mix the medicine, it takes two seconds to do. But it would definitley help not having to take a cooler pack with you. I think the other drugs must be refridgerated.
Good luck, each medicine has a website to check out all the info on. ALso the national ms society website is really good. It explains the diffrences in the 5 drugs.
Good Luck;)
I was just diagnosed in April. I am on Betaseron, which is an every other day shot. The good thing about Betaseron is that since you travel a lot you don't have to refrigerate it. It comes in a package and you mix the medicine, it takes two seconds to do. But it would definitley help not having to take a cooler pack with you. I think the other drugs must be refridgerated.
Good luck, each medicine has a website to check out all the info on. ALso the national ms society website is really good. It explains the diffrences in the 5 drugs.
Good Luck;)
kimpossible67
10-01-2007, 03:55 PM
I'm just not convinced enough to continue with my meds at this time. I'am going through a whole lot at this time and it's just a "one more thing" I don't feel like dealing with. I had bad reactions with my first drug (Copaxone) and a lot of depression with the Avonex. At the moment, I feel better physically than I have in some time. It is your decision and maybe not an easy one but do what is right for you.
MSNik
10-01-2007, 05:28 PM
HI, just wanted to add, being on Rebif. Rebif can be NOT refrigerated up to 28 days. I dont refrigerate mine, per my doctors instructions. I find that the medicine doesnt burn at all, and I never get a site reaction if I keep it at room temperature! I even hold the syringe in my hand for 5 minutes to bring it up to body temp before I inject...
Also, I travel. Alot. Both daily, and monthly, both nationally and internationally. I have NEVER had a problem bringing a months supply of Rebif with me anywhere. I carry a prescription for it, with the medicine and keep it on me at all times...seriously, a months supply of Rebif takes up less room then a single shoe in my carry on bag- and the manufacturer of Rebif makes really neat travel bags to keep your syringes, alcohol wipes, autoinjector (if you choose to use it) altogether in one small bag..it even has an area for an ice pack.
But does it help with the symtoms? no. Rebif, Copaxone and Avonex and Betaseron are designed to prevent new symtoms from forming, and reduce MRI activity (no new lesions means no new symtoms) and slow down progression. None of them will take away damaged Myelin which is already causing issues...so the big question becomes are you willing to postpone starting meds because either your not committed at this time to doing so, or because you dont want the side effects, or because you dont feel that your disease warrants them (this is the personal side of the choice) or are you of the choice that starting meds as soon as you are first diagnosed will prevent your disease from progressing......also a personal chioce. There is no right or wrong answer here....my doctors all TOLD me to get on meds asap so that my MS would stay controllable...a year later, and a year of being on Rebif, nothing has progressed and things are all good.....however, is it luck? The Rebif? or my lot in life?? NO one can tell for sure....I just feel bettr knowing Im doing EVERYTHING I can do to take control of Ms and not let it control me.
Also, I travel. Alot. Both daily, and monthly, both nationally and internationally. I have NEVER had a problem bringing a months supply of Rebif with me anywhere. I carry a prescription for it, with the medicine and keep it on me at all times...seriously, a months supply of Rebif takes up less room then a single shoe in my carry on bag- and the manufacturer of Rebif makes really neat travel bags to keep your syringes, alcohol wipes, autoinjector (if you choose to use it) altogether in one small bag..it even has an area for an ice pack.
But does it help with the symtoms? no. Rebif, Copaxone and Avonex and Betaseron are designed to prevent new symtoms from forming, and reduce MRI activity (no new lesions means no new symtoms) and slow down progression. None of them will take away damaged Myelin which is already causing issues...so the big question becomes are you willing to postpone starting meds because either your not committed at this time to doing so, or because you dont want the side effects, or because you dont feel that your disease warrants them (this is the personal side of the choice) or are you of the choice that starting meds as soon as you are first diagnosed will prevent your disease from progressing......also a personal chioce. There is no right or wrong answer here....my doctors all TOLD me to get on meds asap so that my MS would stay controllable...a year later, and a year of being on Rebif, nothing has progressed and things are all good.....however, is it luck? The Rebif? or my lot in life?? NO one can tell for sure....I just feel bettr knowing Im doing EVERYTHING I can do to take control of Ms and not let it control me.
taosdaphne
10-01-2007, 11:43 PM
I've been on Rebif for almost 3 months. I've stopped falling, which is a good thing, and I have less numbness in my right leg. I've had one bout of wicked side effects, but otherwise I'm OK. It'll be 6 months before they'll be able to tell how well it's working.
For me, meds were a no-brainer. I was dignosed at 54, but think I was showing signs in my forties. Progression can be faster when you are diagnosed at a later age, and althogh I've accomodated, more or less, to my current level of disability, I don't want to slide down the slope, and in the year before DX I was.
But now I'm going to shoot up my Rebif, get in warm jammies and socks to avoid the chils, and read a book till I go to sleep.
taosdaphne
For me, meds were a no-brainer. I was dignosed at 54, but think I was showing signs in my forties. Progression can be faster when you are diagnosed at a later age, and althogh I've accomodated, more or less, to my current level of disability, I don't want to slide down the slope, and in the year before DX I was.
But now I'm going to shoot up my Rebif, get in warm jammies and socks to avoid the chils, and read a book till I go to sleep.
taosdaphne
Rem4
10-03-2007, 01:37 PM
Question to MSNik, when you travel internationally, how do you count the days of the injection as you are loosing a day traveling east. And do you still inject at night before bed time? How do you calculate?
thanks
thanks
Bearygood
10-14-2007, 11:29 AM
Hi, SquirrelGirl! :wave: It would be great if you started a new thread to start your story, so it doesn't get lost in (or hijack) story Rem's about drug choices.
Do want to tell you though that "benign MS" is a very controversial phrase that a lot of doctors won't even use anymore. This disease is very unpredictable. Just to be clear, I am RRMS with very few sx and am not on drugs so it's not like I'm trying to scare you onto medication by saying this; I just believe it serves no purpose to perpetuate a myth; to imply that there's some type of "guarantee". Your doctor might say that my MS is "benign" but mine would say that I'm RRMS but so far (except for maybe the one time that led me to my dx), the sx have been mild. ;)
Welcome to the board!
Do want to tell you though that "benign MS" is a very controversial phrase that a lot of doctors won't even use anymore. This disease is very unpredictable. Just to be clear, I am RRMS with very few sx and am not on drugs so it's not like I'm trying to scare you onto medication by saying this; I just believe it serves no purpose to perpetuate a myth; to imply that there's some type of "guarantee". Your doctor might say that my MS is "benign" but mine would say that I'm RRMS but so far (except for maybe the one time that led me to my dx), the sx have been mild. ;)
Welcome to the board!
tinanicholson
02-19-2009, 07:08 AM
hi, just thought I would say that I have been on the copaxone for around 9 years. It's not that bad at all. I have never had flu like symp. I dont have reactions at the injection site. The most I have had is a little bit of itching, which is only a couple of min. I would not go off my copaxone,course thats just me, everyone is different.The copaxone is subcutanius, whereas it just goes under the skin. It's once a day,but so far I have made out pretty good. Good luck to you with making your decision.
shelaghsc
02-22-2009, 07:46 PM
hi, just thought I would say that I have been on the copaxone for around 9 years. It's not that bad at all. I have never had flu like symp. I dont have reactions at the injection site. The most I have had is a little bit of itching, which is only a couple of min. I would not go off my copaxone,course thats just me, everyone is different.The copaxone is subcutanius, whereas it just goes under the skin. It's once a day,but so far I have made out pretty good. Good luck to you with making your decision.
I was just diagnosed with MS a few weeks ago after having a mild case of Optic Nurtitis. I also had an MRI that confirmed the MS. My Neurolgist suggested treatment. I have decided that Copaxone would work well with my lifestyle. (married, mother of two young children and work full-time)least side effects, and is safe. I am glad to hear that after 9 years it is working well for you that gives me hope. Thank you for sharing.
I was just diagnosed with MS a few weeks ago after having a mild case of Optic Nurtitis. I also had an MRI that confirmed the MS. My Neurolgist suggested treatment. I have decided that Copaxone would work well with my lifestyle. (married, mother of two young children and work full-time)least side effects, and is safe. I am glad to hear that after 9 years it is working well for you that gives me hope. Thank you for sharing.
Tkatmolmom
03-18-2009, 12:40 PM
I was just diagnosed with MS a few weeks ago after having a mild case of Optic Nurtitis. I also had an MRI that confirmed the MS. My Neurolgist suggested treatment. I have decided that Copaxone would work well with my lifestyle. (married, mother of two young children and work full-time)least side effects, and is safe. I am glad to hear that after 9 years it is working well for you that gives me hope. Thank you for sharing.
Hi, just wondering if you had any other symptoms before your Optic Neuritis. I am 44 yr old female just being diagnosed. My neuro suggested a spinal or lumbar puncture to determine if I need to start meds. We seem to have the same diagnosis 'course' as far as ON and MRI leading to the diagnosis.
T in TN
Hi, just wondering if you had any other symptoms before your Optic Neuritis. I am 44 yr old female just being diagnosed. My neuro suggested a spinal or lumbar puncture to determine if I need to start meds. We seem to have the same diagnosis 'course' as far as ON and MRI leading to the diagnosis.
T in TN
slsmith1122
03-18-2009, 11:55 PM
I've been on Rebif for almost 3 months. I've stopped falling, which is a good thing, and I have less numbness in my right leg. I've had one bout of wicked side effects, but otherwise I'm OK. It'll be 6 months before they'll be able to tell how well it's working.
For me, meds were a no-brainer. I was dignosed at 54, but think I was showing signs in my forties. Progression can be faster when you are diagnosed at a later age, and althogh I've accomodated, more or less, to my current level of disability, I don't want to slide down the slope, and in the year before DX I was.
But now I'm going to shoot up my Rebif, get in warm jammies and socks to avoid the chils, and read a book till I go to sleep.
taosdaphne
Taos” ｄｏ ｙｏｕ ａｌｗａｙｓ ｇｅｔ ｃｈｉｌｌｓ？ what do they feel like?
For me, meds were a no-brainer. I was dignosed at 54, but think I was showing signs in my forties. Progression can be faster when you are diagnosed at a later age, and althogh I've accomodated, more or less, to my current level of disability, I don't want to slide down the slope, and in the year before DX I was.
But now I'm going to shoot up my Rebif, get in warm jammies and socks to avoid the chils, and read a book till I go to sleep.
taosdaphne
Taos” ｄｏ ｙｏｕ ａｌｗａｙｓ ｇｅｔ ｃｈｉｌｌｓ？ what do they feel like?
MS40
03-24-2009, 05:03 PM
slsmith1122,
I used Rebiff 44 for two years and found lots of side effects including headache, increase in MS symptoms and an overall crappy feeling. I hear it depends on if you have relaps remitting or secondary progressive or primary progressive ms to determine how well Rebiff will work for you.
I used Rebiff 44 for two years and found lots of side effects including headache, increase in MS symptoms and an overall crappy feeling. I hear it depends on if you have relaps remitting or secondary progressive or primary progressive ms to determine how well Rebiff will work for you.
MSNik
03-25-2009, 03:41 PM
Rebif is only approved for relapsing remitting MS, so if you have any other form, its not likely to work for you, at all.
I have RR MS and have been on Rebif for 3 years. Starting with over 50 lesions when i was diagnosed, I havent had one new one show up and Im getting Brain and Spine MRIs every 6 months. I also havent had any new symtoms. Not to say that I dont have terrible days- we all do- and at times, my original symtoms flare up and rage to the point of desperation- however I have learned what the triggers are. Stress, change of seasons, extreme humidity, even really rainy days can bring on my symtoms. I try to just be grateful for the good days and know the bad days will pass...
Nikki
I have RR MS and have been on Rebif for 3 years. Starting with over 50 lesions when i was diagnosed, I havent had one new one show up and Im getting Brain and Spine MRIs every 6 months. I also havent had any new symtoms. Not to say that I dont have terrible days- we all do- and at times, my original symtoms flare up and rage to the point of desperation- however I have learned what the triggers are. Stress, change of seasons, extreme humidity, even really rainy days can bring on my symtoms. I try to just be grateful for the good days and know the bad days will pass...
Nikki
TXChica70
03-25-2009, 06:44 PM
Me personally, I was not given the choice of drugs. I was put on Avonex and have been taking this shot for 3 years now. I still get the flu like symptoms even after all this time, some weeks better than others. I take the shot in the afternoon so I feel fine the next morning. I'd rather only lose a half day instead of the entire one. The shot is painful and I probably wouldn't have gone in that direction had all my options been explained to me. I will say though that I quit taking the shot for 6 months and had a flare up. I also quit taking the shot for a couple of months another time and had another flare up. So, for me it's working and I won't quit taking it. I have a 4 year old and I want to try to keep my attacks at a minimum for as long as I can.
Good luck to you and keep writing on here. It's a good group.
Good luck to you and keep writing on here. It's a good group.
iluvsiamese
03-26-2009, 03:51 AM
I originally started off taking Beta Seron, but unfortunately it stopped working for me so they switched me to Copaxone. I actually have a easier time with the Copaxone. I have memory issues, and I would have trouble staying on the right days to inject with the Beta Seron... with the Copaxone it's a lot easier for me because I just take it at the same time every day and then there is no question as to if it's been one day or two since my last shot... just food for thought.:dizzy: