Thursday, November 1, 2012

Do you take your disease-modifying therapy as prescribed?

Julie Stachowiak, PhD
Writer, ms.about.com 


I'll start by saying that many people are not on disease-modifying therapies (DMTs), for one reason or another. Maybe you have a form of MS that doesn't respond to current therapies, such as progressive MS. Maybe your doctor wants to switch you to something new and you are waiting to start that medication. Maybe you made the personal decision (hopefully with your doctor) to stop your DMT, for several different reasons.

On the other hand, many people have decided to be on a DMT, but end up not really taking it as prescribed. They get the prescription, fill the prescription and have their medications in hand. They know how to give the injection or take the pill, but somehow just don't take their meds. This is known as "non-adherence" ("adherence" means taking your medication as prescribed).

I'll be the first to admit it – sometimes it is a hassle to take my DMT. I'll also admit that sometimes it is so much of a hassle that I skip a dose here and there, telling myself that this is not the best idea, but it also is probably not the end of the world. 

However, research presented at the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS 2012) showed that missing more than the occasional dose could result in increased risk of relapse.

A study conducted in US, called Therapy Optimization in Multiple Sclerosis (TOP MS), followed almost 3,000 people who were either taking Copaxone or one of the interferons (Betaseron, Rebif or Avonex) to see what the impact of adherence was. Adherence was measured by how often people refilled their prescriptions. Here is what they found:
  • 70.8% of people had medication on hand at least 90% of the time.
  • Turns out that people who had medication on hand at least 90% of the time were about half as likely to have a relapse as those people who had filled 50% or less of their prescription. 

In another US study, people who were non-adherent to their DMTs had a 38% higher chance of having a relapse than those who took their medication at least 80% of the time. Those who had discontinued their medication had a 54% higher risk than people taking their meds. The risk of MS-related hospitalization was 54% higher for non-adherent patients and 73% higher for people who had discontinued their DMTs as compared to adherent patients.

Why don't people take their DMTs as prescribed? We could all guess at the reasons, but a French group conducted a study among 602 participants to really find out what the reasons for not being adherent to DMTs were. 

Here is what they found:
  • 50% of patients who were taking a DMT had actually considered stopping their medication at one point or another. The primary reasons they gave were side effects (61%), because they were “fed up with it” (61%), or "felt weary" (57%).
  • 16% of patients had actually stopped their medications. The reasons they gave were side effects (43%) and a lack of observable results (32%).

What do these results mean? Well, the French study shows us that other people aren't perfect, either. The non-specific answers of "fed up with it" and "feeling weary" probably sum up the feelings of many people who start skipping doses or stopping their DMTs altogether.

However, the studies on the impact of non-adherence are sobering. We may know people who say they stopped their medications and they feel great. You may actually be one of those people. While it is not guaranteed that people who stop their meds will have a relapse, the risk of relapse for people who stop their DMTs is clearly increased.

The bottom line is that if you have decided to take a particular medication, it may be wise to search your soul and commit to taking the medication as prescribed. If you are not going to take the medication or want to alter your regimen in some way, discuss it with your doctor and determine the best course of action for you.

 

19 comments:

  1. I was on Copaxone for 8 months. Took me a while to get my head around giving myself daily injections as I did have a needle phobia! Finally got my head around it, did not miss a dose for 8 months but became allergic to the medication (broke out in hives from head to toe on 2 occasions). I no longer take it and my doc wants me to try Avonex, but I have decided that at this time I am not commited enough to try again.

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    1. I don't think my reply was sent. I found myself in ICU at UCLA and was there for two months. I almost died. It was a VERY unusual first relapse. I was then diagnosed with MS and have not stopped my Betaseron. I would not stop taking it because I don't want my family to have to go through what they did. Please reconsider ...... Possibly Avonex will not cause the side effects you felt with Copaxone. Trust your doctor. And.....never give up. Let's not let MS take us!

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    2. I too tried copaxone and so desparately wanted it to work. I was on it 5 months and had blisters behind my ears, under my arms, cheek & temple area. So I stopped taking it.

      I began using Rebif last October. I was very scared to try the drug. It is working for me. MRI shows holding the legions at bay. I take the shot tues, thurs, and Sat. evening so I can sleep thru part of the side effects. At first I felt like I had an achy flu and now i'm doing much better and have few side effects and they are workable. I am finally getting use to it to some degree. The shots aren't near as bad as I thought they would be. Don't give up!

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    3. Im on avonex right now for my ms. Was hard the first month cuz it made me feel a little sick, but while ur getting used to it u can just take some advil, and its hardly noticeable. Best part, is after u get up to the full dose u can use the pen shot. Very easy and doesnt hurt at all. E
      Was a big relife, cuz im afraif of needles too and u dont even have to look at it :)now i dont really have any side effects at all. Hope u feel better and keep trying :)

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  2. I haven't been able to be on a DMT for a while. Couldn't do Copaxone, and finally had a reaction to Rebif after years of use. I highly recommend Avonex (did for 2 years) or Rebif (used for about 10 years), as my disease was not only controlled, but my physical abilities actually improved after being on Rebif for only a couple of months. Went from using a walker full-time to using a cane occasionally. Now I'm having to consider Gilenya, but am not happy with all I am reading about it. Not able to do Tysabri either. What else is there? My symptoms have increased since I had to stop my injections! If you can be on a DMT, do it!

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  3. I have to wade in here. We, patients using DMT's are still lab rats for the Rx companies. They know simply what MAY help MS and what definitely IS/ARE side effects. No one knows when you are going to relapse, but they DO know that your system will break down from the drug therapies. They cannot reverse demylinazation, and until they can people continue to poison their system with drugs that MAY help. Well,a pickle MAY help! An apple MAY help! Stop doing these drugs simply because your doctor says so! Read the reports, MAY, is just not good enough to poison us!

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  4. I have to wade in here. We, patients using DMT's are still lab rats for the Rx companies. They know simply what MAY help MS and what definitely IS/ARE side effects. No one knows when you are going to relapse, but they DO know that your system will break down from the drug therapies. They cannot reverse demylinazation, and until they can people continue to poison their system with drugs that MAY help. Well,a pickle MAY help! An apple MAY help! Stop doing these drugs simply because your doctor says so! Read the reports, MAY, is just not good enough to poison us!

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  5. In Response to both the article and to bbblooze's comment. DMT's are only for those with RRMS. I was a human research subject for ten years in clinical trials for many of the drugs that are used today including, Avonex, Rebiff, Copaxone, and several others that never made through phase two studies. I was a lab rat in the most literal sense of the word and I am proud of that.

    "MAY" is a huge word and if you have RRMS stick with what your neurologist tells you to do. I have been relapsing progressive for two years now, there are no treatments for folks like me. However: It is better to have a "MAY" then to hear the words, "Its over you can't work anymore." an ounce of prevention as the old saying goes. We can't stop this devastating disease but if you can try to control it with DMT's do it. As one of my neurologists at UCLA MS Research told me while I was in clinical trials. "If you take the medication it MAY slow the progression of your disease. If you choose not to take them we can't undo the damage that MS is doing in your body right now." Best advice I ever received.

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  6. I was on Betaseron for about 12 years and the last six I felt it was no longer helping me. I probably had built up immunities against it. I also was tired of having flu-like symptoms the day after my injection. The only way I coped at work for years was to take ibuprofen for the fever/chills/flu/ So I switched to Copaxon. I had absolutely no side effects but after a year or so I was at work feeling even more tired than usual and had huge black bruises all over my arms. I had a blood test and was immediately put into the hospital. I was diagnosed with Acute Mylocytic Leukemia. I've decided not to take any of the MS drugs. It's been 8 yrs and am still in remission. Finally, my new Neurologist says I am right not to be on any meds because I have secondary progressive ms. I'm having more pain and increased fatigue but still using my walker very slowly.
    Of course the drug companies do push their meds and I'm sure they do help some in slowing down the progression of our disease. (Lets hope all those researchers/scientists who come up with the meds are sincere and honest. I like to think so anyway. However, I also blame many of the Doctors because they DO PUSH these drugs and often care more about research than they do their patients! I actually asked a doctor once why he kept pushing a certain type of drug asking if was he being paid some by the drug companies. He looked right at me and said YES! I'm still praying and giving money to the MS society hoping they come up with a real cure.
    When I'm sure I won't hesitate to get on it. We all try to do the best we can I'm sure.

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    1. I seldom get on this site. But tonight what I've read REALLY depresses me. Where else can we turn other than our neurologist? If you think he is feeding you b---, then get a new neurologist you believe is really out for YOU. Mine tells me the cure is "just around the corner"....but what does "just around the corner" really mean? If you are suffering from MS the cure can't be found soon enough. I DO believe that having a positive attitude helps with ANY physical malady we have. So......keep a positive approach! I've been on Betaseron since being diagnosed ten years ago. And.....WITH NO RELAPSES!!!!!!

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    2. Thank you so much for your advice. I always say mind over matter, or 1 minute, 1 hour, 1 day at a time. Positive attitude!!! Not always easy but it works!

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  7. I have been taking Avonex for over 5 years, since I was diagnosed, and fortunately without any side effects. I feel grateful that I was diagnosed in a time where there was treatment. I believe that it is doing what it's promised...slowing the progress of MS and decreasing relapses. Perhaps there will be a time when this particular treatment is not effective for me any longer but I look forward to the new drugs that will be available and for being able to try them. Everyone needs to do what feels most comfortable for them. I would hate to think that I didn't try everything I could to help myself. I think I've missed my weekly injection only 3 times in the last 5 1/2 years...once when my dad passed (I was little distracted) and a couple of times when I misjudged how many I had left and ended up without it. It's funny how my husband has to remind me despite the fact that I have it on my calendar. It's hard to remember something you do only once/week ;)

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  8. Very interesting reads here. I just came back from an MS "fair". DMD pushing by the doc speakers was huge. I had been on Avonex for 6 of my 8 years with MS....just got worse and worse by year 5/6 to the point of needing a cane. At this SPMS point not sure why my neuro is still "pushing" DMDs or steroids. Sometimes I get the sense I used to get in catechism...if you lie you'll go to hell. If you don't take your DMDs you'll be in a wheelchair in no time! Of course ECTRIMS will report those DMT findings....what about Afsaneh Shirani, M.D of University of British Columbia's study of 862 patients where researchers said they found those who took the drugs no less likely to suffer long-term disability than those who took none. So here we are again.....in the middle.


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  9. I have been on Ampyra for a year...their website says about 32% of ms patients see an improvement. It's easy to take, lucky it's a pill. Think it helps with my gait, but p.t. has helped more,but I hate to think how I would be without it. It's very expensive, not covered by insurance, but I qualified to get it free from the company, 3mos at a time, a phone call renews it. I hear about people doing the drugs mentioned above and am grateful not to be on anyb of those.

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  10. Betaseron for three months now since diagnosed. New to this but feeling great.had the flu like symptoms bad in the beginning but not so much anymore. Hoping to live a long life....walking.

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  11. when i was diagnosed 3 yrs ago, i started tysabri.. it was actually really good, only felt tired that day, and i didn't forget as all i had to do was show up at the hospital. now that i'm on avonex, i forget, and i have aches and pains for about a day or two after, even though i've been on it 5months! i'm also a nurse, so it never occured to me not to try the medications. have to say i miss the tysabri! having said that, managing our disease is not just about what medication we take, its the eating well, exercising, and taking care of our spiritual and mental health! Two of my tips are do something you enjoy at least once a week, no matter how you feel, and be thankful for something everyday! I am thankful, there is treatment, otherwise who knows where i'd be?

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  12. I've for Tysabri for nearly 3 years now and yes I chose the lazy option for my medication and it's working really well, it's only 1 hr out of my day every 4 weeks and I'm now use to needles. This I look at being better than having a daily worry of relapses.

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  13. I was diagnosed with RRMS on 9/10/12. My Neurologist prescribed Tysabri and I've just been approved to start. I am honestly not sure I want to start medications. I'm leaning towards a holistic treatment of diet and exercise and natural supplements. Of course I will discuss with my doctor but I know he will be against this. He is a leading researcher and I understand why he is recommending I start Tysabri right away. Any thoughts?

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