I think that the side effects are an important consideration but that the 'delivery' method is also important. For example: the clinical trial I was in required one shot a week of Avonex or placebo, intra-muscular via 1 1/4" needle. I had flu-like symptoms after each injection for about 3 months or so. I also was on Copaxone or placebo, as part of a the trial. This was administered sub-cutaneously by a much smaller needle, but it was done 7 days a week. I can't speak to side effects as I'm not sure if I was getting the drug or a placebo. The reason I think I was getting Avonex was in fact due to the flu like symptoms I experienced. I think MSNik is doing Rebif, which is an interferon like Avonex but I think it is administered differently.
I hope that I was some help, and no matter what you decide good luck to you and keep us posted.
Hi there, and yes Im doing Rebif, so Ill put my two cents in.
Making this decision is really hard. I had to do it, too...Its almost impossible to get straight answers as it is such a personal choice, and so many things play into this...but this is what I know about the drugs, and Im sure others will chime in and tell you if they disagree:
Betaseron was the first drug approved for MS therapy...its a huge needle, in my opinion...its administered every other day subcutaneously (under the skin, NOT in the muscle). Betaseron is an Interferon, and its side effects of flu like symptoms are accompanied by the possiblity of site reactions. This means red marks where you inject, soar spots, etc..
Everyone I know who is on Betaseron mixes their own meds before injecting- i do NOT know if they have started supplying it pre-mixed already....is it one of the weaker or stronger drugs? its right in the middle...most people who started on Betaseron, stay on Betaseron, unless they start showing additional activity (more lesions) on their MRIs.
Avonex came out next...its also an interferon, however a different type. It was brought out because studies showed that something else had to be done to help the people who had more than only one or two lesions, and its stronger than Betaseron. The side effects are the same; flu like symtoms and injection site reactions. Avonex is injected only once a week, INTO the muscle..
Patients started complaining that by the end of the week, they felt like they "needed another shot" the drug was wearing off...so, Rebif was brought out. Rebif is exactly the same interferon as Avonex, however you do it 3 times a week (I do Tuesday -Thursday -Sunday, allowing me to have friday and saturday off). Its injected into the skin, not the muscle- the needle is the smallest on the market. It can be done with an autoinjector (simply insert the needle and bang it into your skin) or with the syringe (I use both, autoinjector in hard to reach places like my arm, and back, syringe in my thighs and stomache). The side effects are the same as above...it is a stronger dose of the drug, even if it is the same drug, because you are administering it more often.
Then, for one more thing to think about, you have Copaxone. Copaxone is NOT an interferon. Its a synthetic drug, made to do the same thing without the side effects...the down side? You have to do it every day...the side effects are minimal for most people, however the drug isnt as strong or aggressive either...many people complain of lumps under their skin, bumps and red patches where they inject and soarness from this, however they still use this whenever a patient is not tolerating the Interferons well, or when a patient is positive they want to start with an every day shot....
You also have Tysabri to think about, however even though it is approved for first defense of MS, its not usually used until MS has progressed or all other drugs are no longer showing results...its an infusion which takes a few hours, given once a month in a hosptial setting (a certified TOUCH center). This drug is the most aggressive of all, the side effects can be tremendous however the results are very promising).
As you can tell, I can give you ALL the info you want on Rebif and Avonex as I am ultra familiar with these drugs...we have others who are on Betaseron and Copaxone who can chime in and tell you more about those...
One thing you should know, the flu like sytmoms only last 1-3 months and they stop. They can be managed. One Aleve before my injection manages to keep all of them away. My nurse had suggested two tylenols first- with taking that, I was still getting stomache pains for 4 hours after the shot...once I switched to Aleve, nothing...after a few months on the drug, I experimented and found out that I can take the shot with nothing before hand and NOT get sick. I can do my shot in less than 10 minutes (ice it, alcohol wipe it, shoot it and massage it) and its finished...I then carry on with my life.
With any of the interferons if flu like symptoms are a major concern you should know they kick in about 2 hours after the shot is given...last only 4-8 hours and you are fine again...keeping in mind that you can do this every other day (betaseron) or 3 times a week (Rebif) or once a week (Avonex) its not really that bad getting the symtoms for only a few months. Youre NOT going to have them all the time, only for a few hours post-shot and only for a few months while your body gets used to it...
Does any of this information help? I hope so. You can read more about each drug by searching for info under their names...each manufacturer has a website with additional information.
You should also know that NONE of the drugs will help any symptoms that you already have..they will either go away or not when they are ready....the purpose of all disease modifying drugs is to slow down the progrssion of MS and show less activity (less new lesions) on your MRIs...less activity or no new lesions is supposed to equate to no new symptoms...It doesnt mean that you wont have relapses, and relapses are most likly in the first 6 months of being on the drugs...it takes about 6 months for them to really start to build up in your blood stream...but again this all comes back to whether or not you want to be aggressive with your treatment, or if you want to take another more holistic approach and try to control it by supplements, nutrition and exercise....we have plenty of people who choose to do that route as well.
I have been lucky in the fact the last year and a half have been relapse free without drugs -- BUT, it has been my choice to treat the symptoms ONLY of my MS with naps as I need them, Provigil, and as little stress as I can manage (I finally got SSDI a few months ago and my partner is a "good provider" so I can DO just a little part-time work at home).
Personally, I am not convinced that the DMDs are all that effective. The studies don't impress me. I was on Avonex for a year and a half and Copaxone for a few months. The side effects for Avonex were very infrequent after the first couple of months, but then the pre-mixed syringes came out and my body did not do well with them. Copaxone was fantastic the first month and then the site reactions just got intolerable. They may be considered "minor" by the medical community, but they were god-awful and I couldn't take it anymore.
All I can say is that I'm five years into this mess and my bad days now are no worse (and actually fewer) than they were back then.
If you choose ANY of the interferons, make sure your doc does a liver panel before you start, and then every 3 months. They KNOW these drugs are toxic to the liver, but it's amazing how few neuros order this. It's my GP who keeps track of this for me, and is actually doing an ultrasound next month to see what more we can learn. I was on Rebif until my liver enzymes shot out of the stratosphere, then 3 months w. nothing while the liver healed. They wanted to try me on Avonex, which is just as toxic as Rebif, so I chose copaxzone instead. Stinging and redness for 15 minutes or so, and that's it. I've been feeling great, but fatique level is way up and I'm starting to fall again--we hope this isn't a relapse--feels more like a ****** MS day, so I'm playin on the computer, watchong b'ball and/or tennis, and generally being a slug.
My docs left the choice up to me however he said that Avonex looked like the right choice for me. I had a MRI with moderate activity. I think he wanted to start with the least invasive, weaker dose therapy fist. He suggested doing the powder form, because people tend to have lessen side effects. I get headaches and chills. Advil and Aleve work for that. So far, I'm one year in and no knew activity. It appears to be working for me right now. If I start to relapse then I would go to Rebif. Same drug alittle stronger and more frequent. That's what I love about Avonex.... I SHOT A WEEK. INTERMUSCULAR-DOESNT HURT-NO UGLY SITE REACTION. EASY. 2 ADVIL MAKES IT MANAGABLE.
Good luck with your choice. Don't start with the Cadillaic if you don't need it. Sometimes the sedan does just fine.
1 year on Rebif =156 shots 1 year on Axonex = 52 shots
Good Luck they all help slow the progression of the disease.
MS for Life: I too am 5'2 and my weight fluctuates between 100 and 105 pounds. I started Avonex in November. My doctor did give me the choice of starting with a lower dose but I opted not too. I did opt for the smaller needle though! My side effects were very bad the first two weeks, then improved and leveled out. The side effects after my last shot on Friday night were much improved since the previous week. It's getting very easy to get through now.
I don't know if it would be easier to get thru the side effects on a drug that administered more often, but my gut says yes. I'm sure others here know for sure. For me at least, the side effects are definitely manageable. I do have to set aside time every week to get through them though--I don't make plans for Saturday mornings, just to give myself time to feel better.
As far as stomach problems go, I haven't experienced any from Avonex. Actually my stomach seems to be working better than most of my body! My appetite hasn't been affected and the drug has never made me nauseated.
MS for Life, I wanted to add that I too, am pretty small. 5'4 and 108 lbs at my heaviest-
I take Rebif, unlike April, mine is subcutaneous, into the skin, not the muscle.
I really dont think that build has anything to do with this- it appears we have all sizes and shapes taking all sorts of injectables.
I know youre worried about this, and the side effects. I can tell that this is foremost on your mind and Ill be honest with you, none of the interferons are side effect free. If you can handle it, you might consider Copaxone which is every day, but usually no big reaction to it..however, you have injection site marks to deal with, sometimes they are minimal, some people really complain about the pain of them..
Like April and anxiousme said Avonex, as well as MY rebif tend to only bother you for a few hours. When I took 1 Aleve at 9 pm and did my shot at 9:30 pm, I could go to sleep and sleep thru 99% of the reactions....now and then I would wake up feeling nauseaus or even sweaty, but it ALL PASSED in a few months....and it never lasted into the next day. BY month 4, I was taking my shot at 5 pm, cooking dinner and watching tv with my family until I was ready for bed. It sounds a heck of alot more ominous then it is....you really get used to it quickly. Try not to stress over the what ifs and believe me, your family will adapt to this sooner than you realize. By the time you start getting used to the meds, you will be laughing at how worried you were.
Youre asking really good questions though- keep asking..the right answer is out there!
Good luck
Nikki
