Aa
copaxone vs rebif
I'm one of the "lucky" ones I guess because we are hitting on an MS diagnosis pretty quick. I started with a numb left arm on January the third that I atributed to the cubital tunnel surgery I had on that arm last year. Over the next couple of days numbness never went away and I started getting them over the rest of my body starting with my trunk and working its way down my legs to my feet. After not being able to get into my PCP I went ahead and called a neurologist that I'd seen back in 2009 to rule out a possible hereditary brain tumor ( all clear ) due to headaches I was having. I was lucky and he was able to work me in two days later which was a Friday afternoon. He checked me over for maybe 10 minutes then told me to stay put and quickly left the room and I could hear him making calls to his MRI location. He had done work me in on a Friday afternoon for a brain cervical and thoracic MRI with and without contrast poor MRI guy had to stay till 630 with me to finish it all. I went home and waited for the promised call. At 7:45 pm I get to call that he wants me to go straight to the emergency room and check myself in and that he was calling ahead to let them know I was coming he told me it's transverse myelitis and I'm going to give it to you straight you've got plaques on your brain and you've got a dye reactive lesion at c2 c3 and it's looking like a lot like MS. Three days on IV steroids goes well and I go home Sunday night to continue oral steroids at home. Numbness and very annoying MS hug still here but not worse. Went to neurologist today and we went over everything and decided that I do still need to have a lumbar puncture but he still certain in his diagnosis of MS. I am 45 years old but looking back at least the past two years I've had various symptoms could have been MS trying to rear its ugly head things such as vitamin D deficiency, fatigue, lots of things that you also just a tribute to being a busy mother of a 6 and an 11 year old. With my own research I feel certain he is right. Now I just need to decide what meds to try from the ABCR list he recommended. I'm leaning towards copaxone because of the lesser strong side effects but would love input . I am a strong willed, headstrong, slightly OCD chick so asking for help from my great family & friends is hard but I'll suck it up because this damn sure isn't going to take me out. Started neurotin today so hopefully this attack will go down soon and I'll be back to as normal is I'm going to get. Any advice for a newby would be great.
Oh fer cryin' out loud. Really, I can't use the word sux? How about blows then? This club blows? Blowz? And so do filters that censor words that are perfectly regular words. My vacuum sux dog hair off the floor should not be too shocking for public consumption, I'm thinking. What's shocking is how often I have to vacuum! ;-)
Welcome to the club. Yay, huh? I'm pretty recent and had a very similar experience, at least from the speed and classic signs standpoint, and from the (in retrospect) long-time suspicious symptoms attributed to other things and for which I never saw a doc - crashing fatigue, heat-sensitivity, numbness - sound familiar? And let's round up by a few weeks and say I was 52 at time of dx. The longer you read here, the more glaring it will become to you that our experience of speed and definitive dx, is NOT the norm. I'm constantly appalled by the stories I read here.
About what your neuro says: he needs to get on the ball. First of all, insurance is not some monolith, and he should know that. Second, HE is going to be a large portion of what you will have access to and what you won't. It kinda sounds like he just doesn't want to bother to fight it for you. Since you have a definite dx of MS and not a CIS, what he suggests for you to be on should not be subject to the whims of the insurance I'm thinking. It should be based on what he thinks is best for your case. While not going into details at the time, my neuro intimated that the different meds are not all the equally effective with different presentations of MS. At least that was my impression, because he said if I had presented with eye problems or mostly numbness, he might have suggested copaxone first. Maybe some of the other members will chime in and say that is hooey, but I still can't think of a reason that your doc would not want you on a med with a higher relapse reduction rate than copaxone, as some of the newer meds have.
Anyway, my guy was busy on the phone getting pre-auth from insurance and dealing directly with the pharmaceutical company. It was shockingly smooth and fast. I suspect he was able to make the case that since I'm older and progression is generally faster with late dx, that something like copaxone isn't strong enough and a bigger gun is required. I didn't have any pushback against the Tecfidera we decided on for me. And yes, I am liking it quite well so far. Injectables will be my LAST choice when forced there, and not one second before.
Anyway, before you commit to the copaxone, I'd be needling the doc (pun intended) to tell me why he thinks copaxone is truly better for your case, and why he has not (if he has not) tried to push through something like Tec or Gilenya. Don't accept the copaxone unless you're truly OK with it and you've assured yourself you have no other options.
Good luck to you and again, welcome to the crappy club. The club *****, but the members are pretty great. ;-)
Karen
About what your neuro says: he needs to get on the ball. First of all, insurance is not some monolith, and he should know that. Second, HE is going to be a large portion of what you will have access to and what you won't. It kinda sounds like he just doesn't want to bother to fight it for you. Since you have a definite dx of MS and not a CIS, what he suggests for you to be on should not be subject to the whims of the insurance I'm thinking. It should be based on what he thinks is best for your case. While not going into details at the time, my neuro intimated that the different meds are not all the equally effective with different presentations of MS. At least that was my impression, because he said if I had presented with eye problems or mostly numbness, he might have suggested copaxone first. Maybe some of the other members will chime in and say that is hooey, but I still can't think of a reason that your doc would not want you on a med with a higher relapse reduction rate than copaxone, as some of the newer meds have.
Anyway, my guy was busy on the phone getting pre-auth from insurance and dealing directly with the pharmaceutical company. It was shockingly smooth and fast. I suspect he was able to make the case that since I'm older and progression is generally faster with late dx, that something like copaxone isn't strong enough and a bigger gun is required. I didn't have any pushback against the Tecfidera we decided on for me. And yes, I am liking it quite well so far. Injectables will be my LAST choice when forced there, and not one second before.
Anyway, before you commit to the copaxone, I'd be needling the doc (pun intended) to tell me why he thinks copaxone is truly better for your case, and why he has not (if he has not) tried to push through something like Tec or Gilenya. Don't accept the copaxone unless you're truly OK with it and you've assured yourself you have no other options.
Good luck to you and again, welcome to the crappy club. The club *****, but the members are pretty great. ;-)
Karen
good for you to be proactive and start the meds - that's an important first step to keeping this MonSter at bay. Welcome to the club! -Laura
Lumbar puncture came back with no signs of infection and multiple o-bands so I'm officially a member of the club no one wants to belong to. I'm at week 5 since my transverse myelitis diagnosis and have full feeling back in my legs, my arms unfortunately not so much but my research and talking with my physical therapist both say that it takes about three months sometimes to recover everything. unfortunately the back side of that is that anything you don't recover by the 3 month mark tends to stay that way so I'm being hopeful that we can kick this by then. Start on my MS meds next week went with Copaxone so we'll see how it goes.
Darn! I just wrote a very lengthy indepth reply and hit enter and it was lost! Argh!!!
i'll try this again -
welcome to the club no one wants to belong to. immesceo hit the key points and it is especially great you are being proactive and learning more BEFORE you go to the doctor so you can have an informed conversation and know the right things to say.
The CRABs - copaxone rebif, avonex and betaseron were the only drug choices we had for quite a while. Copaxone is now also availabe as a three times a week injectible and Avonex has a new version called Plegridy which is also given less often so be sure to ask about those.
Gilenya and Tecfidera are orals and both have good outcomes too. We know each of us responds differently to these drugs and most of use have to try more than one before finding the right one for us. Whatever you do, be sure to talk to the pharma's drug assistance program about the copay. Each of them desperately want us to take their drug and will do whatever it takes to help with the copay. A couple of them pay all of the copay and others have a $10 or $20 program. But you have to get this before your drug starts - they don't do it retroactively. You can start a drug and then apply but it won't cover any co pay charge you have already incurred.
Keep the positive attitude and allow that OCD to work in your favor - the more you take charge and control your life, the sooner you will find the ways to coexist with MS.
take care, Laura
i'll try this again -
welcome to the club no one wants to belong to. immesceo hit the key points and it is especially great you are being proactive and learning more BEFORE you go to the doctor so you can have an informed conversation and know the right things to say.
The CRABs - copaxone rebif, avonex and betaseron were the only drug choices we had for quite a while. Copaxone is now also availabe as a three times a week injectible and Avonex has a new version called Plegridy which is also given less often so be sure to ask about those.
Gilenya and Tecfidera are orals and both have good outcomes too. We know each of us responds differently to these drugs and most of use have to try more than one before finding the right one for us. Whatever you do, be sure to talk to the pharma's drug assistance program about the copay. Each of them desperately want us to take their drug and will do whatever it takes to help with the copay. A couple of them pay all of the copay and others have a $10 or $20 program. But you have to get this before your drug starts - they don't do it retroactively. You can start a drug and then apply but it won't cover any co pay charge you have already incurred.
Keep the positive attitude and allow that OCD to work in your favor - the more you take charge and control your life, the sooner you will find the ways to coexist with MS.
take care, Laura
Thanks! Pills are definitely my preference but my neurologist says insurance usually won't cover til after injections are tried (which I'll definitely be checking out before I start anything because in my job I deal with insurance daily so I'm not scared of those guys). If pills are covered, any advice on best/easiest ones?
Hey there! Sorry it sounds like you're soon to have official admission to the club, but props for being proactive about your treatment. It sounds like you've narrowed it down to two, but also know that if the CRABs injections don't seem to fit what you want, there are also many other options out there today including oral medications. The injections have been on the market far longer, though, so many people do prioritise their much longer safety data.
I think it really comes down to being honest about what you can religiously adhere to, potentially long-term. Just using my own thought process as an example, for me Copaxone was immediately off the list. Why? Because I know myself enough to know something I had to administer daily was most likely to be occasionally forgotten, resented, ignored. Also, to be honest, I was young, vain, and was really put off by the lipoatrophy potential.
For me, looking at something I only had to think about once a week was more attractive, even staring down the possibility of flu-like symptoms in the day or two following injection. So, of the injectables, Avonex was my personal vote. Ultimately I decided to participate in a drug study, which was a long, serious thought process on my part. I have no regrets. It was and continues to be right for me. But the lack of long-term data and necessary time commitments would understandably make my ideal treatment a complete non-starter for someone else.
We all just weigh up the pros/cons and how they fit with our own lifestyle and personality. We're actually in a wonderful position these days with the most common forms of MS in that there's a much better chance that you'll find something that ticks enough boxes for you.
Another things to have in mind is a bit of flexibility. It's still very early days for you, but many if not most of us will have to revisit our treatment choices at one time or another. Perhaps we develop antibodies, perhaps we progress, perhaps something new comes out that seems more appropriate. The key is to not get too discouraged if/when this happens. MS is a life-long relationship. Sometimes adjustments have to be made.
I think it really comes down to being honest about what you can religiously adhere to, potentially long-term. Just using my own thought process as an example, for me Copaxone was immediately off the list. Why? Because I know myself enough to know something I had to administer daily was most likely to be occasionally forgotten, resented, ignored. Also, to be honest, I was young, vain, and was really put off by the lipoatrophy potential.
For me, looking at something I only had to think about once a week was more attractive, even staring down the possibility of flu-like symptoms in the day or two following injection. So, of the injectables, Avonex was my personal vote. Ultimately I decided to participate in a drug study, which was a long, serious thought process on my part. I have no regrets. It was and continues to be right for me. But the lack of long-term data and necessary time commitments would understandably make my ideal treatment a complete non-starter for someone else.
We all just weigh up the pros/cons and how they fit with our own lifestyle and personality. We're actually in a wonderful position these days with the most common forms of MS in that there's a much better chance that you'll find something that ticks enough boxes for you.
Another things to have in mind is a bit of flexibility. It's still very early days for you, but many if not most of us will have to revisit our treatment choices at one time or another. Perhaps we develop antibodies, perhaps we progress, perhaps something new comes out that seems more appropriate. The key is to not get too discouraged if/when this happens. MS is a life-long relationship. Sometimes adjustments have to be made.
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