"this shows a double plus [++] for both Rebif and Betaseron, and only a single plus [+] for both Avonex and Copaxone."
I wanted to comment on this. The reason you see a difference in these + and ++ signs is do to the medication levels. I believe that is because Rebif and Betaseron are both "stronger" medication dosages than Avonex and Copaxone. Just to repeat, the lower "strength" medications don't seem to make a difference in overall reductions in relapses but the choices of the different medications could correlate to the disease level. If that makes sense? Meaning, a person taking Rebif or Betaseron may be taking a slightly stronger medication to control the disease process (which is why you might see ++ if the medication is working well.)
This is an interesting post... I chose Avonex but it appears I have slightly different opportunities than some. My doctor will allow me to use Avonex and Rebif together to help control my progression. They are the same medication, just injected differently so she indicated I can use BOTH together. So, I like the fact with Avonex I can "move up" in strength without changing a medication. I can switch easily in a few months to the higher dose Rebif without issue and without "weaning." I also like the once a week shot for now while my body adjusts to the medication and this lifestyle change. It seemed like a good way to "introduce" this to my system.
This was an awesome discussion - perfect timing for me. Thanks!!!
Thank you :)
I'm in the Copaxone club too (for now, and the near future, at least)
I'm thinking and hoping that i won't have to pay for it myself out of pocket, i'm canadian for godssake.
Regardless, if i'm not mistaken, copaxone just happens to be the most inexpensive CRAB, anyway ...no?
We're worth every penny! No... I know what you mean. Copaxone is my DMD, too. It's crazy expensive :/ Good luck getting started ladies! I'm 46 days in with Copax.
Let the forum know if you have questions, I have found LOTS of help and support here.
- Jane
Good luck Dianna! I picked up my Copaxone today and it's in the fridge. I just have to wait for the nurse to come by and show me how to use it.
I nearly passed out when I saw the price of the Copaxone!
congrats on moving forward, whatever your DMD choice might be.
I thought you were just being festive, what with Easter coming up! But I like the symbolism of breaking out of your shell.
UPDATE: i spoke with my MS nurse today... i'll be starting on my DMD in early April.
You struck me particularly with these words:
"I'm just so tired of torturing myself with the uncertainty inherent to our disease. The only thing I feel I KNOW is that I need to start treatment, period."
So true - I believe the uncertainty of day to day living with MS is the biggest adjustment we are required to make. I felt empowered once I began injecting my DMD.
As for the timing of decisions, I think William James said it best with these words, "When you have to make a choice and don't make it, that is in itself a choice."
One more thing. I love your little piglet avetar. It has inspired me to return to my original chick in an egg. I chose it in the beginning because I was a new chick around here. Now it seems more about how tough it is to break through my shell.
So, welcome to our community and I'm looking forward to your updates.
Mary
I appreciate the discussion were having here immensely - I find it as reassuring as it could be and I can't thank everyone here enough. I think at this point I'll stick with the choice i made originally (Copaxone) and see how that goes... I'm just so tired of torturing myself with the uncertainty inherent to our disease. The only thing I feel I KNOW is that I need to start treatment, period.
I'll be starting in the very near future (waiting for coverage to go through, red tape) and I'll keep everyone here updated with the progress. Again, thank you thank you thank you!
Dianna
Thanks for inspiring this discussion Dianna. I love spirited debate where people are trying to help one another instead of simply out to prove their own point of view.
I'm going to take this opportunity though to advise everyone to CHECK THE DATE ON ALL RESEARCH OR RECOMMENDATIONS YOU REVIEW. MS researchers and specialists change their minds frequently these days. NOT EVERYTHING YOU READ ON THE INTERNET IS CURRENT OR ACCURATE. NOT EVERYTHING THAT LOOKS LIKE A STUDY ACTUALLY IS A STUDY.
Just in case it was missed, the research Diana referenced talked about TREATMENT NAÏVE PATIENTS. When used in this context, treatment naïve means these research subjects have NEVER used any of the disease modifiers. The research group they were randomly placed in determined their initial contact with any DMD. This can make a real difference in research outcome. And, those of us who have been treated can’t assume these results apply to us equally.
Now, it appears one link to this research shows a “publication” date of October 12, 2011. I wondered about the 1:12am release time so went to the next link. That one appears to be the same info but it is listed as a “press release” and dated April 17, 2008. Scrolling down you can see this info is somehow connected with the manufacturer/distributor of Copaxone. Doesn’t mean it’s false - just probably a little slanted - AND there are lots of disclaimers at the end.
I don’t know the exact dates of this research. I’m not familiar with either of the sites it appeared on. Copaxone presently continues to be my personal DMD of choice. I’m just saying that we can share personal experience here and with other web based contacts but should stick to official research sites and releases (yes, for some of those you have to pay for access) to be sure the information we use for important decisions is as ACCURATE and CURRENT as possible. Peer to peer is VERY useful but NOT always accurate or current.
You have gathered a lot of good info Dianna between your own research and what others have brought here. I favor Jane's take myself but (as many have pointed out) these decisions - however limited at present - are very individual in nature.
I think you can wiggle yourself out of that tight spot - the
Rock>>Dianna<one - if you keep in mind that this isn't a forever decision about making the perfect choice. There is NO PERFECT DMD for any of us. Choose the one you believe can do the job you need done NOW and that YOU are most likely to COMPLY with NOW.
The thing that seems to be tripping you up is your youth and the number of years you have ahead to live big while relying on drug mediated modification of the MS disease process. That IS important. HOWEVER, (important distinction coming) your YOUTH IS actually IN YOUR FAVOR in today's MS research world.
There truly are NEW developments coming. Older members will probably see them. I suspect only younger members will get a real chance to reap big benefits. Oral treatments will be wonderful. See if you can imagine treatments with the potential to RE-myelinate rather than simply slow the pace of destruction. That’s improvement - a HUGE step forward for PwMS both figuratively and in the reality of mobility.
Whatever comes our way, PwMS (at present) make educated guesses about treatment options. Like Jane, I wish the docs worked with us as a team member. I don't want them to make all my decisions but I don't want to have to become a medical researcher either. Sadly, reality seldom lands anywhere near the middle of that spectrum.
Make the best decision you can FOR YOU to use now. You will likely use more than one DMD along the line anyway. Perhaps researchers will create a day when you don’t need any DMD at all! NOTHING seals you into a specific treatment forever. In addition, all the DMDs can be enhanced by upgrading diet and choosing healthy life practices that work to preserve and strengthen nervous system health.
Sending good thoughts your way as you decide exactly which tool to lift against this foe.
Mary
My impression is that all of the studies on the CRAB drugs have methodological weaknesses, such as the open label status that Lulu mentioned, patients lost to follow up and the difficulty of accounting for differences between the patients who stayed on the drugs and those who didn't. The other thing to keep in mind is that all these studies were conducted by the drug companies. It would be interesting to know who published the chart in the neuro's office.
As Jane mentioned, you as an individual may do better on one drug than another. Many researchers think that the general results for the DMDs hide the fact that some people respond better to a given drug and some don't respond at all. Unfortunately, because the results are not so easy to see in an individual even if the drug works and they don't have any biomarkers, it's usually hard to know which category you fall into. However, if one drug doesn't seem to be working, even a switch to another CRAB drug is often helpful: http://multiple-sclerosis-research.blogspot.com/2012/02/treatment-swicth-for-suboptimal.html
So as others have said, you basically have to take into account the information you can and your personal preferences and just pick something. The availability of newer, more effective but potentially more dangerous DMDs only complicates the situation.
I've posted this before, but I think it's telling. The neuro George Schumacher once said, "When somebody finds an effective treatment for MS, you’ll know it without the need for sophisticated statistical calculations." -- http://content.karger.com/produktedb/produkte.asp?typ=pdf&file=000151525
sho
In 2010, TEVA released the results of their ongoing 15 year study of Copaxone users with an average time of MS about 22 yrs., and the results were very good. The slowing of progression with the use of copaxone has been proven through some rigorous testing.
I found this back from 2010 when I wrote here on this forum -
"After 15 years, 80% of all patients on copaxone were still walking unaided. Around 2/3 of the people in the trial have not progressed to SPMS, which is pretty much considered a given for the next step of this disease. They also showed that the EDSS numbers remained stable and in many cases improved for these people on copaxone.
It is pretty much agreed that it can take 6 months or so before the DMD's gain control in our bodies and begin to work.
The other DMD's also post significant results. Until we know the cause of MS, these drugs offer us the best shot, no pun intended.If one doesn't work for your body, please consider trying something different. "
The down side of this study is it was an open-label study and nothing to compare against. Still, the numbers speak loudly to the importance of treatment.
Oops, typo : "The Copaxone studies I have seen have not shown a reduction in disability progression, but that doesn’t mean Copaxone doesn’t slow MS progression - it just means in hasn’t been scientifically documented to do so."
Should be: "The Copaxone studies I have seen have not shown a reduction in disability progression, but that doesn’t mean Copaxone doesn’t slow DISABILITY progression - it just means in hasn’t been scientifically documented to do so."
After I was diagnosed, I started pouring through medical journals looking for the best DMD. I saw that many, many scientific studies had been performed, and each had a different structure with different patients whose disability and disease progression had been tracked in different ways. I noticed that the overall results in each study were computed as an average of the results for each individual in the study, and often the bell curve for the study was pretty flat and wide, telling me that individual results varied widely.
I took it all to mean that, while I can use the results of these studies to guide my choice of DMD, none of those studies can actually tell me how my body will react to any particular DMD. I decided to just get on one and ensure that I have a good neuro who can help me track my body's reaction to the DMD so that I can make an informed decision about whether to change later or stick with my first choice for the long haul.
I believe I do remember reading a study somewhere that showed a slower progression of disability using interferons versus using nothing (can't re-locate it, so I couldn't cite it - and my memory isn't the best these days, so take it with a grain of salt unless you find the study yourself). I believe it was a two year study.
The Copaxone studies I have seen have not shown a reduction in disability progression, but that doesn’t mean Copaxone doesn’t slow MS progression - it just means in hasn’t been scientifically documented to do so. Another aspect of all this we have to remember is that none of the DMD's have been studied for more than 18 years or so in the first place.
After a couple of weeks of research, I decided I was splitting hairs and made my choice based on which DMD I thought I could be most compliant with.
I think each person’s choice for first DMD is a personal one, and choosing any of the DMD’s available is a good choice. The main thing is to get on one and take it properly so that you and your doctor can track your individual disease and make good decisions 5 and 10 years from now. At diagnosis, it’s pretty much a crap shoot. Any CRAB will do, and you literally have no way to know which one will work best for your body until you try them all.
Yes, each DMD has been shown to be effective in different ways. Those differences are partly due to the differences of the drug, but may also be partly due to the different structures of the studies. In the end, each drug affects an individual differently, so none of those studies can tell me what any of the DMD's is going to do for me- they can only tell me what a particular DMD *might* do for me.
* Not trying to be controversial here, so I hope no one takes it that way. Just having open conversation. As Lulu said, "Ultimately the best dmd for any of us is the one we pick, and will stick with until there is a known reason to move on."
Best wishes to all,
Jane
Thanks Dianna. I almost wish my neurologist had just put me on a drug rather than have me decide. Every time I think I've made a decision, I second guess my decision. I am leaning towards Copaxone right now, I have to make my decision by Monday! So difficult!
actually, i got that from a CRAB comparative chart my doctor at the MS clinic gave me...
on said chart, there is a "Reduction in the chance of developing greater disability" category
it has a plus sign [+] (that signifies benefit) in all of the interferon based therapies, and a big fat "Maybe" in the Copaxone column.
it also has a "Reduction of inflammation on MRI (fewer enhancing lesions)" category
this shows a double plus [++] for both Rebif and Betaseron, and only a single plus [+] for both Avonex and Copaxone.
Am I explaining this clearly?
So I figure, if this is the information an established MS clinic has adopted and is providing its patients to aid them in choosing a DMD, there must be something to it, right?
Which studies are you finding that say interferon drugs help reduce the risk of developing disability? I've been trying to find such research but i keep coming across studies that say they are equal...
http://ms.about.com/b/2007/06/18/betaseron-vs-copaxone-looks-like-we-have-a-tie-folks.htm
I see what you're saying... they all seem to be "good", effective drugs - but based on the literature i was given at the MS clinic and TONS of subsequent reaserch online (published studies), clearly they're all good in in different WAYS.
My perspective on the issue, at least right now (treatment naive), is strictly "big picture" ... overall LONG TERM effectiveness. I don't care about injection frequency, potential immediate side effects, convenience, etc. I'm young, and can't help but be preoccupied with my future, and how this monkey wrench [MS] is going to influence it.
I feel like i'm being forced to choose between better cognitive function (Copax) and reduced risk of developing a physical disability/ailment (Rebif) Am i making any sense? Stuck between a rock and a hard place. I almost wish I could be on TWO DMD's!
Hi and welcome to a great forum. If you look far enough, you will find the same types of results for almost all of the DMD's. As my neuro describes these choices, it is much like the Pepsi-Coke challenge. They are both colas and basically the same but have individual twists to them. What type of shot can you do? How often? Storage conditions for the drug? These are all the Pepsi-Coke questions that have to be asked.
The CRAB DMD's are all quite similar in results - Copaxone Rebif Avonex and Betaseron -and have been in use for a nice length of time to study. The newer drugs - Gilenya and Tysabri - are usually held in reserve in case the CRABs are not effective.
Each one of us reacts differently to these DMDs and what works well for one person may not do so well for the next. It is very much an individual thing. The good news there is fast progress is being made on a test on biomarkers that will help the doctors look at our makeup and see which drug we most likely will respond to best.
An important point to make here, though, is the DMDs do not make us feel better immediately, In fact, these drugs do not do anything to manage symptoms, they are working to turn our immune system around, but don't help with the other problems. They do give us a sense of relief that we arefinally doing something for our disease and perhaps that contributes to that feeling better effect.
Symptoms are managed by a whole bunch of other drugs - and each one is added as you need them.
Copaxone takes sometimes up to six months to get the immune system behaving in a better way, so be patient and stick with it. The interferons - RAB as well as Extavia - can start working in a few months. But absolutely none of them are immediate. Our bodies didn't get this way over night and it won't be fixed quickly, either.
Ultimately the best dmd for any of us is the one we pick, and will stick with until there is a known reason to move on.
Good luck with the copaxone - it is a very good drug and I hope it works well for you.
best,
Lulu
You're welcome... i'm surprised that no one seems to be aware of the study. at least, no one's talking about it.
I finally ended up biting the bullet after doing my research and stumbling onto this little tid-bit of information. but to be honest, in the end i just didn't want to be the mule in between two bales of hay who starves to death, not knowing which one to choose. i kept hearing that as far as anyone knows, there was no real difference. i guess i was determined to find that one little piece that would make a significant difference to me.
1936411_tn?1331418129
JaneK1975
well i can give you a couple of the websites i've been looking at, but i it's all over the internet... all you have to do is google "copaxone brain"
http://www.news-medical.net/news/20111012/COPAXONE-reduces-loss-of-brain-volume-in-patients-with-RRMS.aspx
http://www.reuters.com/article/2008/04/17/idUS238173+17-Apr-2008+BW20080417
this played a significant role in my decision to finally choose copaxone, because i believe i may already be experiencing some cognitive dysfunction as a result of my MS. but at the same time, i know that copaxone has not been *proven* as effective in reduction in the chance of developing greater disability, if that makes any sense. my brain is very important to me... i don't want to one day have the brain of an 80 year old in a 40 year old body! (i'm 25)
BUT, if i am more likely to develop a greater disability on copaxone, i could be a 40 year old with what may feel like an 80 year olds body.
my head is spinning, i made my choice, but i cant help constantly second guessing myself... i'm terrified.
I think Avonex is the lighter weight medication but they all have been proven to have about a 33% reduction in relapses... they also both take about the same amount of time to build up in your system.
Both of these medications are "front line" DMDs - so I am thinking that they are used initially then when there is a resistance built up or if your disease progression indicates then you move into heavier medications.
I don't think you can really go "wrong" with either to start with as it's all about how your body tolerates and responds to the medication. My doctor assured me that should I have a relapse the medication will fall under scrutiny and a few addition medical tests will be order to see if I've developed a resistance ... or we just need to tweak a few things.
I liked Avonex because there were additional options as long as I manage the medication without fully switching to another drug...as you can go "up" to Rebif without much adjustment.
Good luck. It's hard to decide... but that is where my reasoning came from. :)
I called one of the nurses at my MS clinic today. I told her I was struggling between Copaxone and Avonex. I said I felt like Avonex would be better at helping to stop the progression of the disease but she said that at that particular clinic they felt that Copaxone was more effective than Avonex.... I don't know what to believe anymore!
well i can give you a couple of the websites i've been looking at, but i it's all over the internet... all you have to do is google "copaxone brain"
http://www.news-medical.net/news/20111012/COPAXONE-reduces-loss-of-brain-volume-in-patients-with-RRMS.aspx
http://www.reuters.com/article/2008/04/17/idUS238173+17-Apr-2008+BW20080417
this played a significant role in my decision to finally choose copaxone, because i believe i may already be experiencing some cognitive dysfunction as a result of my MS. but at the same time, i know that copaxone has not been *proven* as effective in reduction in the chance of developing greater disability, if that makes any sense. my brain is very important to me... i don't want to one day have the brain of an 80 year old in a 40 year old body! (i'm 25)
BUT, if i am more likely to develop a greater disability on copaxone, i could be a 40 year old with what may feel like an 80 year olds body.
my head is spinning, i made my choice, but i cant help constantly second guessing myself... i'm terrified.
Chris