katastrofic
02-17-2004, 06:20 AM
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After a year of waiting, I was finally diagnosed with relapsing-remitting MS. I already knew (still hoped otherwise),but to hear it was very upsetting. My doctor sent me home with 4 video packages with info on 4 medications to choose from: Copaxone, Betaserone, Rebif and Avonex. I'm asking for some feedback from whoever should take the time to share their experiences with any of these drugs. I know that they all have side effects varying and depending on the individual, but any info you could offer would help me make a decision sooner. I have no symptoms at present, however that took a year to clear up. I had numb hands and numb left upper abdomen, vertigo, fatigue, and clumbsiness... I hope not to experience that again anytime soon. I also would like any info on dissability insurance from fellow Canadians who have set up a plan. I live in Ottawa. If you have any suggestions please let me know. Thank you. :confused:
Kathy
http://kathykennedy.vze.com
After a year of waiting, I was finally diagnosed with relapsing-remitting MS. I already knew (still hoped otherwise),but to hear it was very upsetting. My doctor sent me home with 4 video packages with info on 4 medications to choose from: Copaxone, Betaserone, Rebif and Avonex. I'm asking for some feedback from whoever should take the time to share their experiences with any of these drugs. I know that they all have side effects varying and depending on the individual, but any info you could offer would help me make a decision sooner. I have no symptoms at present, however that took a year to clear up. I had numb hands and numb left upper abdomen, vertigo, fatigue, and clumbsiness... I hope not to experience that again anytime soon. I also would like any info on dissability insurance from fellow Canadians who have set up a plan. I live in Ottawa. If you have any suggestions please let me know. Thank you. :confused:
Kathy
http://kathykennedy.vze.com
Sponsor
JND
02-17-2004, 01:33 PM
Hi Kathy,
I was DX'd mid 2003 and decided on Avonex due to less side effects and that it was only once a week, which helps if you travel much. As far as the side effects the first injection was the worse. Took the injection on Friday and had flu like symptoms the following two days. I had my 11th last Friday and the side effects have greatly reduced to no more than a few achy joints but taking Tylenol and/or Motrin before and after pretty much remedies that.
The decision is obiviously yours and the effects of any are different from one person to another.
Good Luck with your decision and keep us posted.
Take Care :wave:
Dave
I was DX'd mid 2003 and decided on Avonex due to less side effects and that it was only once a week, which helps if you travel much. As far as the side effects the first injection was the worse. Took the injection on Friday and had flu like symptoms the following two days. I had my 11th last Friday and the side effects have greatly reduced to no more than a few achy joints but taking Tylenol and/or Motrin before and after pretty much remedies that.
The decision is obiviously yours and the effects of any are different from one person to another.
Good Luck with your decision and keep us posted.
Take Care :wave:
Dave
bgdmoore
02-17-2004, 07:29 PM
I have been taking Betaseron since Oct 2003. I started with a low dose and worked my way up to the full dose. It is taken every other day. I haven't had any flu symptoms . I have had a few red areas in my arms but that's it. Good luck
Mom_of_two
02-18-2004, 02:43 AM
Hi, Kathy. I'm a fellow relapsing-remitting MS'er. I was dx last summer. I started with Copaxone in mid-October of last year. I freaked at the thought of daily injections, but honestly...it's not that bad and I'm used to it now. I have a wonderful husband who gives me the injections each evening, and for that I am grateful! One of these days I'll learn to give them to myself. ;-)
Anyway, as for side effects...none so far! A little bit of redness at the injection site and occasional lumps, but nothing too bad. There is always a slight chance (around 10%) that there might be a post-injection reaction which can be scary (so I hear), but the reaction usually doesn't last long. Maybe 15 minutes or a little longer. The thing to remember is to stay calm and know it will go away soon. Many people never even get these reactions, I haven't so far. I chose Copaxone because compared to the other MS treatments, this sounded like the right one for me. I like how it has basically no side effects (compared to the others), that was a huge plus for me right there.
It's a personal decision and after you hear all of the pros and cons of each treatment, I'm sure you'll make the right decision for you. Best of luck to you! God bless and take care. :)
Anyway, as for side effects...none so far! A little bit of redness at the injection site and occasional lumps, but nothing too bad. There is always a slight chance (around 10%) that there might be a post-injection reaction which can be scary (so I hear), but the reaction usually doesn't last long. Maybe 15 minutes or a little longer. The thing to remember is to stay calm and know it will go away soon. Many people never even get these reactions, I haven't so far. I chose Copaxone because compared to the other MS treatments, this sounded like the right one for me. I like how it has basically no side effects (compared to the others), that was a huge plus for me right there.
It's a personal decision and after you hear all of the pros and cons of each treatment, I'm sure you'll make the right decision for you. Best of luck to you! God bless and take care. :)
katastrofic
02-18-2004, 12:30 PM
Hi, Kathy. I'm a fellow relapsing-remitting MS'er. I was dx last summer. I started with Copaxone in mid-October of last year. I freaked at the thought of daily injections, but honestly...it's not that bad and I'm used to it now. I have a wonderful husband who gives me the injections each evening, and for that I am grateful! One of these days I'll learn to give them to myself. ;-)
Anyway, as for side effects...none so far! A little bit of redness at the injection site and occasional lumps, but nothing too bad. There is always a slight chance (around 10%) that there might be a post-injection reaction which can be scary (so I hear), but the reaction usually doesn't last long. Maybe 15 minutes or a little longer. The thing to remember is to stay calm and know it will go away soon. Many people never even get these reactions, I haven't so far. I chose Copaxone because compared to the other MS treatments, this sounded like the right one for me. I like how it has basically no side effects (compared to the others), that was a huge plus for me right there.
It's a personal decision and after you hear all of the pros and cons of each treatment, I'm sure you'll make the right decision for you. Best of luck to you! God bless and take care. :)
Thank you for taking the time to share that information. K
Anyway, as for side effects...none so far! A little bit of redness at the injection site and occasional lumps, but nothing too bad. There is always a slight chance (around 10%) that there might be a post-injection reaction which can be scary (so I hear), but the reaction usually doesn't last long. Maybe 15 minutes or a little longer. The thing to remember is to stay calm and know it will go away soon. Many people never even get these reactions, I haven't so far. I chose Copaxone because compared to the other MS treatments, this sounded like the right one for me. I like how it has basically no side effects (compared to the others), that was a huge plus for me right there.
It's a personal decision and after you hear all of the pros and cons of each treatment, I'm sure you'll make the right decision for you. Best of luck to you! God bless and take care. :)
Thank you for taking the time to share that information. K
Jewel2
02-18-2004, 01:51 PM
Hi Kathy,
My daughter has really bad MS. Over the last 3 1/2 yearsd she has tried Avonex, Copaxone and most recently Rebif. She got the flu-like symptoms with Avonex. With the Copaxone and Rebif she had terrible injection site soreness and eventually hardened skin. She could live with all of those problems. But the reason she had to quit all three drugs was because of suicidal depression. She actually attempted suicide while on the Copaxone and ended up in the hospital. She was emotionally fine before starting and in between taking the drugs. She is now off all of them and doing fine emotionally (but her MS is worse). My mother also has MS and has tried Avonex and Copaxone. The depression also caused her to have to quit taking them. I think you'll find depression listed as a side effect, but I'm not sure how common it is. The side effects are different for everybody. I just wanted you to be aware of this particular one. I hope you don't have any problems and that your MS goes into remission forever!!
Take care,
Julie
My daughter has really bad MS. Over the last 3 1/2 yearsd she has tried Avonex, Copaxone and most recently Rebif. She got the flu-like symptoms with Avonex. With the Copaxone and Rebif she had terrible injection site soreness and eventually hardened skin. She could live with all of those problems. But the reason she had to quit all three drugs was because of suicidal depression. She actually attempted suicide while on the Copaxone and ended up in the hospital. She was emotionally fine before starting and in between taking the drugs. She is now off all of them and doing fine emotionally (but her MS is worse). My mother also has MS and has tried Avonex and Copaxone. The depression also caused her to have to quit taking them. I think you'll find depression listed as a side effect, but I'm not sure how common it is. The side effects are different for everybody. I just wanted you to be aware of this particular one. I hope you don't have any problems and that your MS goes into remission forever!!
Take care,
Julie
Lisa_P
02-18-2004, 02:07 PM
I didn't know there was a choice of medication until I was months into Avonex therapy (I was dx'd last April and started meds in May). So far the effects have been manageable and were very rare UNTIL I STARTED THE PRE-FILLED!! After 8 injections with it, I am still getting the chills and fever, etc. no matter how long I "thaw out" the stuff! My mildest side effects were last time after leaving it out 9 1/2 hours! At least with the unmixed version I only had to warm the meds for an hour or two.
Remember, though, that everyone's reaction is probably a little different than mine.
Remember, though, that everyone's reaction is probably a little different than mine.
Mom_of_two
02-18-2004, 02:54 PM
Julie, I'm sorry your daughter has been through so much with the medications. I think her case is rare, though. Especially when it comes to the Copaxone. Out of all of the MS meds, Copaxone is supposed to be the one with the least side effects. Most who take it do not experience depression or suicidal thoughts. MS itself can cause depression, so maybe that is the case with your daughter? I have no idea.
I've only been on Copaxone for four months, and so far I am feeling fine. No problems at all. At another MS forum I post at, most praise Copaxone as well. I do realize it's different for every individual MS'er, but I think on the whole...Copaxone is a good choice, but it's not the only choice. :-)
I've only been on Copaxone for four months, and so far I am feeling fine. No problems at all. At another MS forum I post at, most praise Copaxone as well. I do realize it's different for every individual MS'er, but I think on the whole...Copaxone is a good choice, but it's not the only choice. :-)
Jewel2
02-18-2004, 03:29 PM
Hi Mom of two,
That's what we heard about Copaxone, too - that it had the least side effects of all. After the Avonex depression she tried Copaxone, but it was worse. She was on nothing for 6 months between the two and was great during that period. After the Copaxone she waited 1 1/2 years before starting the Rebif. During that 1 1/2 years she was fine. Only 3 weeks into the Rebix she sunk into deep depression. After 2 weeks off the Rebif she was fine again. Perhaps my daughter is predisposed to depression and that's why the bad side effects. I think she is an uncommon case as I know others with MS who love their meds. I only mentioned my daughter's and mom's reaction not to discourage anyone, but because it can happen, even if it's unlikely. Depression is something to watch for as it can sneak up on you gradually and take you down fast.
Best wishes,
Julie
That's what we heard about Copaxone, too - that it had the least side effects of all. After the Avonex depression she tried Copaxone, but it was worse. She was on nothing for 6 months between the two and was great during that period. After the Copaxone she waited 1 1/2 years before starting the Rebif. During that 1 1/2 years she was fine. Only 3 weeks into the Rebix she sunk into deep depression. After 2 weeks off the Rebif she was fine again. Perhaps my daughter is predisposed to depression and that's why the bad side effects. I think she is an uncommon case as I know others with MS who love their meds. I only mentioned my daughter's and mom's reaction not to discourage anyone, but because it can happen, even if it's unlikely. Depression is something to watch for as it can sneak up on you gradually and take you down fast.
Best wishes,
Julie
joshremus
02-18-2004, 04:29 PM
I get the impression that very few neuros are willing to prescribe this, but there's starting to be a low roar of information about low dose Naltrexone to treat MS. It looks to be especially low in side effects and is much cheaper than the ABCR's.
But -- you'd definately need to find a neuro willing to do this.
I don't really trust the site that much, but remedyfind (www.remedyfind.com) has some startling testimonials for this drug in use for MS. Also take a look at http://www.lowdosenaltrexone.org/ldn_and_ms.htm.
I'm taking Rebif, so am not a personal testimonial for this drug, but I'm keeping an eye on it for sure.
But -- you'd definately need to find a neuro willing to do this.
I don't really trust the site that much, but remedyfind (www.remedyfind.com) has some startling testimonials for this drug in use for MS. Also take a look at http://www.lowdosenaltrexone.org/ldn_and_ms.htm.
I'm taking Rebif, so am not a personal testimonial for this drug, but I'm keeping an eye on it for sure.
Mom_of_two
02-18-2004, 05:13 PM
Josh, depends if you have decent insurance or not. I know I don't pay a dime for my Copaxone (thank God too!). ;-)
joshremus
02-18-2004, 05:41 PM
Nothing? That's even more incredible than mine, which is $100 for a 3-month supply. The insurance at my work (as opposed to my wive's) not only would be more expensive, but it has a limit as to the total prescription benefits per yer. Ack!
Regardless, LDN is intriguing, and even more so if you've ran through your ABCR drug options.
Regardless, LDN is intriguing, and even more so if you've ran through your ABCR drug options.
pkinney
02-19-2004, 12:18 PM
Hi Kathy.
I am a newbie on the board. I was diagnosed in 1998 but lived in denial until the last three weeks. I experienced an exaserbation that affected my left side. Talk about scary. I too was sent home with the boxes of drug info.
My hubby and I choose Copaxone. As Mom of Two stated - lower side effects is a necessity for my busy life. This drug isn't the most agreesive and for me it's comforting to know that, if necessary, there is a stronger choice.
I will say a prayer for you. I know how difficult this is to accept. Hang in there and know that we are with you.
Patty
I am a newbie on the board. I was diagnosed in 1998 but lived in denial until the last three weeks. I experienced an exaserbation that affected my left side. Talk about scary. I too was sent home with the boxes of drug info.
My hubby and I choose Copaxone. As Mom of Two stated - lower side effects is a necessity for my busy life. This drug isn't the most agreesive and for me it's comforting to know that, if necessary, there is a stronger choice.
I will say a prayer for you. I know how difficult this is to accept. Hang in there and know that we are with you.
Patty
Mom_of_two
02-19-2004, 12:41 PM
Hey Patty...have you started the Copaxone yet then? Wishing you luck with it, I'm sure you'll do fine. :) I've been hearing rumors here and there lately that they are going to start testing people on lower doses of it, as in weekly or monthly injections instead of daily ones! Wouldn't that be fantastic if eventually we only had to get the shots once a week or month? Keeping my fingers crossed for that one day. God bless and take care!
momnmore2
10-28-2004, 05:31 PM
I was Rx'd with MS 5 years ago; it has taken me a long time to come to grips with it; as a matter of fact, I still am!! I live in Southern Ca., with Two female teenagers, and I was fired from my job for the first time ever...anyway, still married after 23 years, and would love to talk with others...I have a "light" case of MS (hah! as if there really is such a thing), am on Copaxone,and would love to talk with others...L
anseay
10-28-2004, 09:14 PM
Hi you guys,
I was given a choice of avonex and rebif. I feel that my ms is very aggressive and in between the two looking at all of the options I started with rebif. I've not notice any majior side affects other than red spots at the injection sight. rebif come with a rebiject pen so you don't see the needle, and as I don't priticulary care for them that works out fine for me. In the begining the depression for me was the suaside thing. I realized that it wasn't the ms or the rebif but all of the antidepressants that the doctors had tried me with. They were having the adverse reactions on me. After over 1 1/2 years I finally found a doctor that would listen to me and he gave me valuim 5mg. I'm an entirly different person. No matter how much pain or what ever ms throws at me I can take it now. My neuro isn't happy about the valuim but at least I have a state of mind. Maybe some others have had this problem and it not be the interferos but the other meds we have to take.
I was given a choice of avonex and rebif. I feel that my ms is very aggressive and in between the two looking at all of the options I started with rebif. I've not notice any majior side affects other than red spots at the injection sight. rebif come with a rebiject pen so you don't see the needle, and as I don't priticulary care for them that works out fine for me. In the begining the depression for me was the suaside thing. I realized that it wasn't the ms or the rebif but all of the antidepressants that the doctors had tried me with. They were having the adverse reactions on me. After over 1 1/2 years I finally found a doctor that would listen to me and he gave me valuim 5mg. I'm an entirly different person. No matter how much pain or what ever ms throws at me I can take it now. My neuro isn't happy about the valuim but at least I have a state of mind. Maybe some others have had this problem and it not be the interferos but the other meds we have to take.
Jewel2
10-28-2004, 09:32 PM
Hi you guys,
I was given a choice of avonex and rebif. I feel that my ms is very aggressive and in between the two looking at all of the options I started with rebif. I've not notice any majior side affects other than red spots at the injection sight. rebif come with a rebiject pen so you don't see the needle, and as I don't priticulary care for them that works out fine for me. In the begining the depression for me was the suaside thing. I realized that it wasn't the ms or the rebif but all of the antidepressants that the doctors had tried me with. They were having the adverse reactions on me. After over 1 1/2 years I finally found a doctor that would listen to me and he gave me valuim 5mg. I'm an entirly different person. No matter how much pain or what ever ms throws at me I can take it now. My neuro isn't happy about the valuim but at least I have a state of mind. Maybe some others have had this problem and it not be the interferos but the other meds we have to take.
You make a very good point. My daughter originally thought it was the Copaxone causing her serious depression so her doctor stopped her injections. But now we think it was the Ambien she was taking at the same time so she is back on Copaxone again. It has been a month and so far so good.
However, when she was on the Rebif she got suicidal and she was not on any other meds at the time. Since the Rebif and Avonex are cousins, we're pretty sure they do cause depression in my daughter as the same thing happened when she was on the Avonex.
She hopes to start the Antegren as soon as it's available. She'll do the Copaxone and the Antegren together.
I just want to encourage everyone to not give up finding the right med to slow this thing down. If one doesn't work, talk to your doctor about trying another. There is mounting evidence that they really do help slow the progression of MS.
Best wishes,
Julie
I was given a choice of avonex and rebif. I feel that my ms is very aggressive and in between the two looking at all of the options I started with rebif. I've not notice any majior side affects other than red spots at the injection sight. rebif come with a rebiject pen so you don't see the needle, and as I don't priticulary care for them that works out fine for me. In the begining the depression for me was the suaside thing. I realized that it wasn't the ms or the rebif but all of the antidepressants that the doctors had tried me with. They were having the adverse reactions on me. After over 1 1/2 years I finally found a doctor that would listen to me and he gave me valuim 5mg. I'm an entirly different person. No matter how much pain or what ever ms throws at me I can take it now. My neuro isn't happy about the valuim but at least I have a state of mind. Maybe some others have had this problem and it not be the interferos but the other meds we have to take.
You make a very good point. My daughter originally thought it was the Copaxone causing her serious depression so her doctor stopped her injections. But now we think it was the Ambien she was taking at the same time so she is back on Copaxone again. It has been a month and so far so good.
However, when she was on the Rebif she got suicidal and she was not on any other meds at the time. Since the Rebif and Avonex are cousins, we're pretty sure they do cause depression in my daughter as the same thing happened when she was on the Avonex.
She hopes to start the Antegren as soon as it's available. She'll do the Copaxone and the Antegren together.
I just want to encourage everyone to not give up finding the right med to slow this thing down. If one doesn't work, talk to your doctor about trying another. There is mounting evidence that they really do help slow the progression of MS.
Best wishes,
Julie
ROpticNeuritis
10-29-2004, 06:43 PM
I am in SOuthern CA also! I am not on meds yet but will be in January. So, I am listening and lurking...I have alot to think about with the meds. The specialist said Copaxone and another one. Do most people take 2? Immunosupressives & Platform Therapy is what he said? Avonex, etc...what types are they?
I was Rx'd with MS 5 years ago; it has taken me a long time to come to grips with it; as a matter of fact, I still am!! I live in Southern Ca., with Two female teenagers, and I was fired from my job for the first time ever...anyway, still married after 23 years, and would love to talk with others...I have a "light" case of MS (hah! as if there really is such a thing), am on Copaxone,and would love to talk with others...L
I was Rx'd with MS 5 years ago; it has taken me a long time to come to grips with it; as a matter of fact, I still am!! I live in Southern Ca., with Two female teenagers, and I was fired from my job for the first time ever...anyway, still married after 23 years, and would love to talk with others...I have a "light" case of MS (hah! as if there really is such a thing), am on Copaxone,and would love to talk with others...L
mikosha
10-29-2004, 11:16 PM
Hi, Julie !
I know a lot of people with side effects not only for ABCR drugs but even for steroids(I mean rear cases of allergic reactions and common elevation of sugar levels).They are taking other combinations-intraveinos IIVIG, different chemotherapy meds.I myself am taking Avonex with IVIG(once a month).It makes a big difference.But you have to find a doctor willing to give it,one who is experienced and knows how to deal with insurances.
If you ask general neuro about IVIG he won't know.I know only one place in New York-St.lucke's hospital.But patients come there even from Europe and Japane.
Good luck,
MICOSHA
I know a lot of people with side effects not only for ABCR drugs but even for steroids(I mean rear cases of allergic reactions and common elevation of sugar levels).They are taking other combinations-intraveinos IIVIG, different chemotherapy meds.I myself am taking Avonex with IVIG(once a month).It makes a big difference.But you have to find a doctor willing to give it,one who is experienced and knows how to deal with insurances.
If you ask general neuro about IVIG he won't know.I know only one place in New York-St.lucke's hospital.But patients come there even from Europe and Japane.
Good luck,
MICOSHA
ohjambo
10-30-2004, 09:02 PM
HEy Momnmore2
I was diagnosed on Oct. 13 with mild MS. I have three children two son 22 and 19 and a daughter 18. Been married for 24 year. would like to talk.
ohjambo
I was diagnosed on Oct. 13 with mild MS. I have three children two son 22 and 19 and a daughter 18. Been married for 24 year. would like to talk.
ohjambo