I've recently been given a diagnosis of MS, and was told to choose one of the DMDs. I've decided that it best I start one, and am in the process of weighing the pros and cons of each. I've gotten pretty familiar with the injection schedules, side effects (such as the flu-like symptoms with the interferons), etc. From what the neurologists and nurses have told me, these drugs are pretty much equally effective (or ineffective), both in terms of preventing relapses, and limiting possible future disability (marketing literature aside). I'd be interested in hearing people's experiences with the various drugs, especially if you've tried more than one.
I was leaning toward the copaxone, since it has fewer side effects and you don't have to have your liver enzymes continually monitored. But I hate the idea of having to dispose of all those needles, and if I travel, having to carry all those needles. Also, I'd like to think that if I wanted to go camping or hiking for a few days, this would still be possible. In that regard, it seems Betaseron would be best, since it doesn't have to be refrigerated.
Hi Mike. Ill put in my two cents too. Im a huge fan of Rebif. The needle is WAY smaller then Betaserons needle (the smallest of any of the injectables, which means less bruising or red marks) it does NOT have to be refrigerated and in fact can be left out up to 30 days. I travel with my job, too- and Rebif only needs to be injected 3 days a week, less then any other drug as well.
Also, it has the highest rate of significantly lowering relapses and MRi activity.
I have been dx for 2 years this year...started Copaxone first and absolutely hated it. I had welts the size of grapefruits on my legs. As soon as I switched to Rebif, (within 2 weeks of my dx) I stopped relapsing, have not had a relepase since- and adjusted very quickly to the interferon. It takes an average of 3-4 months to stop having side effects from any of them, but I can honstly say I never missed a day of work or my life.
As for the liver enzymes- yes, with any interferon you should have your blood work done every quarter the first year..but thats 4 times. After that its only yearly...not a big deal. And, very few people have to worry about liver enzymes spiking. Its a common thing to have happen in the beginning and ususally within a month or so, they level out. Ive only known of one person on the boards who actualy stopped taking an interferon due to liver problems.
So thats my take on it. Sorry to hear you were dx, but welcome to our world. And, if you have any other Rebif questions, shout out,. Ill be happy to answer them.
From what I've read, Copaxone can be left at room temperature for up to 30 days now. Is that not true?
So the flu-like symptoms didn't knock you down? I talked with one person who said she absolutely couldn't stand them, and switched to Copaxone. But I guess everyone is different. Also, in regard to the MRI activity: in reading the various literature, I found the different manufacturers making similar claims. For example, the Avonex booklet says "we're the best at limiting future disability," and the Betaseron literature says "we're the best at limiting disease activity." When I talked with an MS clinic neuro and nurse, they both thought that this was mainly marketing , and that all the drugs were equally effective. The choice really boiled down to personal preferences, like tolerating side effects and the number of weekly injections. Do you have different information?
I wrote that it takes 3-4 months for the side effects of all interferons to cease or stop.
It is true that any of the drugs take about 6 months to build up in your blood stream and that is 6 months from when you go fullstrength. Thats why most docs will NOT consider changing a drug until you have given it that amount of time..in my case, within 2 weeks I knew I was allergic to Copaxone and it was immediately changed to Rebi
I just wanted or needed to clarify that my point wasnt that copaxone can take longer to work or is better or worse then any other choice, simply to answer Mikes question about how long side effects last...
RRMS- dx 05
Last edited by MSNik; 08-18-2008 at 05:52 PM.
Reason: sorry had to reclarify
Hi Mike. Yes, I do. Look into reading the Evidence study and the Prisms study, you can find them by looking them up with relationship to Rebif. Both studies showed that Rebif was more apt to reduce lesions and MRI activity and a whole lot of other positives! They are also available through MSLifelines,which is the company who sponsors Rebif.
As a marketing person myself, there is alot of truth that all companies wil market their products with almost the same wording and try to make them all sound about the same..as a person who also works for a pharmaceutical company (not the manufacturer of any MS drugs) I know enough to read the stuides which compare the drugs...anyone can do it, its just a matter of rsearching to find out which drugs went thru which studies! Evidence and Prism are the only two studies I have found which compare Rebif, Avonex and Betaseron..and they were independent studies, not sponsored by any of the drug companies...
As for your statement about some people having a harder time then others getting used to the drug. Absolutely true. There are many "tricks' and "hints" which we all will gladly share with you to help you get thru the initial side effects. One of them, which Ive shared with everyone is to try taking ALeve, instead of Tylenol or Motrin, 1/2 hour prior to your injection. Im at the point now, where I dont take anything, I bang it and go...like brushing my teeth, but in the beginning, the side effects from any of the Interferons are flu like symtoms which really means Chills, Sweats, sometimes nausea- alot of feeling like someone clunked you over the head. They only last about 8 hours...so, if you take a shot in the evening, before dinner..the side effects kick in about 2 hours later..then you feel lousy until bed time, attempt to sleep, eventually fall asleep and wake up fine! Thrilling, huh?
meanwhile, Tylenol and Motrin are 4-6 hour drugs and you have to take 2 of them...Aleve is a 12 hour pill and you only take 1. Taking only 1 helps, sometimes, taking another 4 or 5 hours later really does the trick! Anyway, when I was a newbie to this, someone (a nurse) suggested it to me, I tried it and it saved me!! Ive passed it on to many others who have thanked me and found the same results...so, NO. I didnt suffer all that badly. I was on vacation about 4 months into my shots and forgot to take an Aleve- just iced it and did the shot...an hour later I realized I hadnt taken anything- I kept waiting for the chills and aches to start but they didnt! After that I stopped doing pre-injection anything and just do the shot..the only time now when I will take an ALeve is if Im having an allover yuck day and feel lousy to begin with. I also usually do the shot in the AM before work (and I leave the house at 6 am) so I dont have to worry about what time I get home to do it. I do them on Tues and Thursday mornings and Sunday whenever I feel like it....gives me Friday and Saturdays off- kind of like a real weekend!
I also wanted to mention that Ive had blood work every 3 months..at one point my liver spiked slightly...my doc convinced me to watch it for another 30 days and repeat the blood work, not go off the drug. 30 days later it was back to normal...this happens alot. I have also had MRIs every 6 months for the past 2 years (its my 2 year MS anniversary tomorow in fact) and to date, not one new lesion, no relapses since month 5 of Rebif....I did have one in the beginning, which scared me- I had some optical Neuritis- however with a round of steroids that cleared up and nothing since! I am thrilled with the drug and wish I had started it sooner.. I wish I was dx sooner, because by the time I was dx I had over 50 lesions. Rebif is keeping it that way and in fact reducing some of them. I just had an MRI a week ago which was all good.
I am not in anyway trying to sell you on Rebif, although many who read this post will think so....you asked, and Im answering. I truly believe in the drug and know for a fact it is working FOR ME.
By the way, I dont know if you are aware of this but Rebif and Avonex are exactly the same drug. Rebif was brought out after Avonex had been on the market for a few years because being that its only a once a week shot, doctors and patients felt that by the 5th day, patients were "craving their interferon'..meaning the blood levels were dropping. In order to circumvent that, they brought out Rebif. By giving it 3 times a week, it keeps the blood levels more stable- thus reducing that "i need a fix" feeling! Just something I thought you might want to know..
Mike, Copaxone is also a really good drug. Many people have success on it. I would never say DONT do it....its a matter of how you like to take your shots, daily, weekly or somewhere in between. DO you like subQ or intramuscular? Do you like being able to carry a prefilled syringe with you at any time in any place or do you prefer keeping everything at home in a lock box in the fridge? Rebif is easy and it works for me..but it might or might not be right for you. The good news is, you can always change drugs!
Hope this helps..keep in touch!
Also, in regard to the MRI activity: in reading the various literature, I found the different manufacturers making similar claims. For example, the Avonex booklet says "we're the best at limiting future disability," and the Betaseron literature says "we're the best at limiting disease activity." When I talked with an MS clinic neuro and nurse, they both thought that this was mainly marketing , and that all the drugs were equally effective. The choice really boiled down to personal preferences, like tolerating side effects and the number of weekly injections. Do you have different information?
Mike, you are correct. Most of the studies you will find were conducted on behalf of the manufacturers of each drug. There are many ways to say "we are the best" and also to make the stats appear a certain way. This is not a diss to any of these companies -- it is just business.
As you said, it is a matter of personal preference, at least to start out. You will find that some people tolerate one med better than another and also have different types of "results". There was an interesting study recently about why one person might do better on Copaxone than interferon and vice versa. While the study did not define exactly why, it infers that there may be different "types" of MS above and beyond the categories we know about.
There are also differences in the way Copaxone and Rebif work. You might find it interesting to read up or inquire about the different mechanisms.
Sorry you had to find us this way but glad you found us. Welcome to the board.
Dxed RRMS April '07
Not on DMDs
In your last paragraph, you wrote about one of the considerations being able to carry a pre-filled syringe or being stuck to a refrigerator. Were you referring to any drugs in particular? It may seem silly, but one thing that keeps stuck in my mind is having some freedom to travel around (at least for now), and not be tied to having things refrigerated. Also, it sounds like, from the schedule that you mentioned, that with Rebif the injections don't have to be precisely spaced in time (i.e. exactly every 48 hours). This would seem to be a pretty good advantage.
I did know that Avonex and Rebif are the same medication. In fact, I was speaking to the neuro yesterday, and he said some neuros in the field believe Avonex may be less effective since it is only once a week, and less medicine is circulating in your body. However, he went on to say only some believe this, and the data is far from conclusive.
The other thing I've been considering is looking into the clinical trials at the university MS centers near me. I think I would shy away from the ones for the newer drugs, which have a placebo group. However, I have seen at least one that combines Avonex and Copaxone, so a person is guaranteed to be receiving something.
Mike, I was in the trial that used Avonex and Copaxsone in combination. You are assured of getting one or the other. In my case, based on side effects alone, my Neuro and I are pretty sure I was getting at least the Avonex. Unfortunately for me I relapsed anyway and we decided to discontinue my participation in this trial. I believe there is at least one other on this board who is taking part in the trial, I think it is hotflash, and if I'm not mistaken she is still participating. Give her shout if you want more info. Please do go to clinicaltrials.gov, it has a wealth of information.
HI- I'm on my 8 th month of Copaxone. and find it to be very simple. I have none of the flu like symptoms associated with the Betaserons and after a couple of weeks I just got used to the daily injection. I do it around 6:30 pm or a little earlier if we have evening plans. The first couple of weeks I got a small welt at the injection site that didn't last long, and occasionally I get a small bruise when I inject my abdomen. If the sight bothers me I may ice it for 5 minutes. But really- it isn't a big deal. I have at times taken the syringe in my pocket and gone into public restrooms to do it really quick. I try to keep it on the same schedule tho at times I might be an hour or 2 off. I would recommend the drug- it was recommended to me by my Neuro- so I went with his advice. Also- a few months ago my Neuro said the studies are looking even better for Copaxone then they even thought before. I have also started a daily exercise routine. I have an active job, but go to the gym on an almost daily basis to do circuit training, biking and or some type of aerobic class for 30 minutes to 1 !/2 hours depending on whats going on. I feel great and the Neuro says that exercise is very important in MS. When I was first diagnosed, he told me to start exercising daily and I sort of ignored his advice and made a half hearted effort at the exercise. I was diagnosed in Oct(had optic neuritis), saw an MS specialist in Miami in December that completely confused me. Saw my Neuro here in Dec after that. The end of Jan woke up one morning with numbness and tingling from the waist down ( had iv steroids), that started to improve and then 2 weeks later had foot drop in right foot followed by more IV steroids. I recovered quickly from all of my symptoms, but let me tell you- it scared the c--p out of me and now I exercise almost daily and think nothing of my daily injections. Life is good! Just do your best to take care of yourself -and don't freak out about any of this. As my Neuro told my wife- MS is a chronic ds. that you will get used to. He says that "MS is a marathon and not a sprint, so you can't get worked up about every little thing." And that includes the shots. Good luck with your decision. This is a very informative web site.
Hi Mike. Seems you have gotten quite a bit of good advice and heard some interesting details since you wrote to me. Im glad. You should be hearing all sides of this.
I really like your idea of clinical trials, AS LONG AS YOU ARE ASSURED of getting at least one of the drugs...now, the downside is you may never find out what drug you were on and may have to wait and see when the trial is over before they allow you to start on a fulltime regimen. During that time, you risk relapse, although you will be seen regularly by whomever administers the trial. You also will be at the mercy of whatever trial you are, hoping that whatever drug you are on- works for you. Where, if you were under the care of a private doc, if the drug didnt seem to be working, he would probably change it within 6 months..
You asked me about refrigeration. Trust me, I know how important this is. Avonex, I believe can be left out for 24 hours, I may be wrong about that. Betaseron, and Copaxone are now stating that they can be left unrefrigerated up to a month, although my doctor is still saying this is too recent a claim, and he is recommending that it stays refrigerated up to 24 hours before using..this is only MY MS specialist's opinion, although I tend to trust him, he is a well known doc at one of the largest University Hospitals in my area (NY-NJ). Rebif, has always been 30 days.
I travel frequently...both in hotels and as you said, camping- doing outdoors things...Rebif sends you this cool little travel thingy which holds up to 10 syringes (thats 3 weeks time), and a sharpie container, and alcohol wipes, even an ice container NOT for keeping your syringes cold, but for icing the area of your skin that you inject. (not everyone does this, but it does seem to help with pain). the whole thing rolls up to the size of a pair of tube socks. Its ultra convienent. Ive never even had a problem with going thru customs or in an airport security area...
the last thing you might want to consider is there are 2 schools of thought on taking DMDs (disease modifying drugs). One is to hit it heavy ...that would mean Rebif..its the strongest medicine available...the other is to start light and increase when time shows that you need more...this would be seen by frequent relapses, activity on an MRI, additional symtoms which can only be attributed to new lesions. My doc was of the hit it heavy thought..and started me on Copaxone first, (it works very well for some people) but when I found out that Im allergic to it (copaxone is synthetic where Interferons are a natural brain foundation), he went right for Rebif.
So you have more information then you know what to do with right now! Im here if you have anymore Rebif questions...Its great to have you on board with us. Please share more about your symtoms, situation, etc if you are comfortable. We are also a wealth of knowledge when it comes to things like talking to your employer (my thought- DONT) and your family..and we are great at helping with symtom management!
My symptoms mostly started in mid-April of this year with some numbness in the soles of my feet. I thought this was from running in bad fitting shoes. However, over the next few weeks, I developed strange tingling sensations at various spots of my body (felt like somebody was spraying me with freezing water), reverberation feelings in my legs, and then, one night, my arm started burning, like a bad sunburn. I finally decided to see a doctor about these symptoms. I knew they were neurological in nature, but I went to my PCP anyway. He ordered all the standard blood tests, and then a brain and c-spine MRI. The brain MRI showed some spots, and he suggested seeing a neurologist (though I knew this was obvious). The original symptoms have since gone away.
When I went to the neurologist, he reviewed the MRI films and did his office exam, and his initial diagnosis was that it probably wasn't MS, but some sort of post-viral myelitis. (Now, I think all neurologists follow this course, start with a conservative diagnosis). The original plan was to have a follow up MRI in a few months, and then possibly an LP. However, in mid-July, I started having new symptoms. The first was that after a shower (I tended to take pretty hot showers) I noticed my lower back buzzing, like a pager. This would intensify if I bent my back or neck forward (though it wasn't painful). Then, a few days later, I walked about a mile to the store (it was pretty hot outside), and noticed my legs were buzzing. Again, this would intensify if I bent my neck forward. Based on these new symptoms, the neurologist said to have the new MRI a few weeks earlier, and this time include the T-spine (after I suggested it). This MRI didn't show any new or enhancing lesions, but the T-spine did show a lesion that was probably missed on the earlier MRI. Also, the new MRI clearer because it was done on a closed machine (The original was an open machine. I have since learned that the stronger, closed machines are much better for MS workups). When I went for the follow-up with the neurologist, he now leaned toward a diagnosis of MS, and said "which drug would you like to choose." I'm still not quite sure why he changed his diagnosis, and will press him at my next appointment. But, just last week, I did go to an MS center near me, and the doctor there concurred with the MS diagnosis. Then he gave me some nice packets to help decide on a drug. By the way, it was this MS doc and a nurse that worked there, that both said all 4 drugs were probably equally effective. Now, my symptoms so far have been mostly sensory and fairly minor, so I guess I'm pretty lucky in that regard. But I'm anxious to start some treatment to try an limit the damage.
I should also point out that on a follow-up with the PCP, he recommended the Igenex lyme disease test. I later found out that this PCP is a so-called LLMD (I didn't specifically seek one out). At the time, I had heard of Igenex, but did not know about any of the controversy surrounding lyme disease and its diagnosis. So, I went ahead and had the test done (out of my own pocket), and, lo and behold, it comes back positive. The PCP was convinced I have lyme disease, and prescribed some potent oral antibiotics. I never had any of the other symptoms (headache, fever, joint pain, etc), and wasn't convinced it was lyme, but thought taking oral abx would be pretty harmless, just in case. I was wrong - I got pretty sick from the abx. Since then, I've moved away from this lyme diagnosis.
Sorry for the long-winded post. If you have any other questions, let me know.
I don't have a whole lot of input for you aside from what's already been said (though i've been on rebif since last november & have been feeling great), but I wanted to address your concern about disposing of needles when travelling. The rebif nurse showed me a really cool needlecutter when she came to teach me how to inject. I found one on Amazon and it was WELL-worth the few dollar investment. It just cuts off the needle from the body of the syringe, so you can throw away the rest. The needles stay inside the cutter - it holds a few hundred of them. It is called a Safe Clip needle clipper & storage device, made by BD.
Mike, I found your story interesting and I'm sure others will. It often helps to share this stuff because others who are reading might be able to relate. I'm very impressed by your handle on this stuff. Re: the MRIs, open of the brain is definitely not ideal at all but Tesla strength is somewhat of a controversial issue. I can't remember but there are one or 2 parts of the spine that can be done open -- I think the one that can't is the c-spine.
You are absolutely correct about Lyme. There can be false positives as well as false negatives but symptomatically it can be identical to MS and sometimes in the presentation of brain lesions as well. The thing that I don't know about Lyme vs. MS for sure is the presentation of spinal lesions. You just reminded me to research this! Re: the antibiotics, I do know that most people with Lyme feel worse when taking them before they feel better. (Herxing.) I also know that not everyone experiences a rash or fever so just make sure you are sure about your dx before you move forward. There some very knowledgeable folks on the Lyme board here if you have any questions.
Both of these diseases are mysterious and crazy!
Dxed RRMS April '07
Not on DMDs
I'm curious - do you know if they needed people to fill out the trial, or were they turning people away? Also, when it looked like the drug(s) weren't working for you, did they have a problem with you dropping out?
I agree with you on the potential pitfalls of a clinical trial. I haven't investigated these in depth yet, but it is my understanding that you could drop out at any time, and not even have to give a reason. So it would seem to me that if you're in a trial where you're guaranteed to get at least one of the drugs, and you find it isn't working, you could drop out and choose your own therapy. It would seem this would reduce the risk somewhat, compared to being in a blind, placebo-controlled trial. Also, I could be wrong, but I thought Betaseron came in a powder form (with a reconstitution liquid), that never needed refrigeration.
In general, (as you can probably tell from my posts), I've been going back and forth on the choices. One thing that struck me recently is that I'd like to remain fairly active (exercise, etc) for as long as I can. In this regard, it would seem that Copaxone would be a good choice, since I wouldn't have to worry about being knocked down with flu symptoms.
Thanks to everyone who has responded so far. I've gotten some good information.
I went round and round about the lyme thing, talking to doctors, reading the internet and thinking about it. In doing research, I found a whole community that swears by Igenex, and some people who got false positives. So, I'm not sure they are 100% reliable. If I had something that showed inconclusively that I have lyme, I would have no problem going on antibiotics, even IV, and suffer through the side effects. Unfortunately, I haven't gotten such evidence. It seems, in the end, I have to make my own judgement.
I've read about the Herxheimer reaction. The side effects I experienced (nausea, vomiting) were not the "herx" symptoms that I read about (a worsening of existing symptoms). I think they were just a result of some pretty toxic drugs.