Clinical trial, anyone?

I was just reading about a clinical trial that’s recruiting participants right now. The investigators will be testing a well established injectable treatment against a newer medication, looking primarily to see which results in the fewest relapses over the course of a year among people with relapsing-remitting MS.

When I read about such clinical research, I often read the “inclusion criteria” (the circumstances under which you are deemed eligible to take part) to see whether I could be a candidate. A big part of me feels that, as a person whose MS is (knock on wood and bless my neurologist) under pretty good control, I should participate in research from which others might benefit. I’m well aware that the treatment I use (which, coincidentally, is one of the drugs in the new trial) only could come to market after it was tested extensively on many people with MS. Indeed, no new treatment can be made available without exhaustive human testing. So it’s incumbent upon those of us with MS to consider participating in such research, right?

But, for now, at least, I find I am not willing to monkey with a system that seems to be working well for me. What if I were randomly assigned to the group taking the other drug? And what if it didn’t work well for me? And what if that caused me to lose momentum in my fight against MS?

These are selfish, thoughts, I know. But I’m just being honest. I wonder how other people sort these matters out.

Have you participated in a clinical trial related to multiple sclerosis treatment? How did you decide to take part? And how did things turn out for you?
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Jennifer

Jennifer LaRue Huget, Blogger

Jennifer LaRue Huget was diagnosed with MS in 2001. A freelance writer and children's book author, she lives in Connecticut with her husband, two teenage kids, and two brown dogs. Her website is www.jenniferlaruehuget.com.

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    18 Comments

  • Eric Schwind   Aug 9, 2013 2:50 PM
    I was in a clinical trial, but it was the first time I took medication for my MS, so there was really no downside to participating. The study was testing whether a double dose of copaxone was more effective than a single dose. Both study groups received medication (no placebo group.)
  • Stephanie   Aug 9, 2013 2:54 PM
    Like you, I have had very good luck with my current medication, and I am hesitant to potentially rock the boat. I was lucky enough to stumble upon a clinical trial that involves my current medication either with an additional drug or not. It felt like a win-win because either way I stay on my current med. I have been participating for 24 months now, coming up on my final study check up, and I am really glad I was able to do this. Of course, driving an hour to a major university every 3 months, and hours and hours in the MRI were inconvenient, but I feel as though I am taking a little bit more control of my disease by doing a trial. I want new drugs as much as anyone, and feel like "if not me, who?" about the whole thing, but at the same time I have a young child who depends on me and I won't take too much of a risk. This particular study was perfect for me. I will be keeping an eye out for my next one, and I see myself as a study volunteer periodically for many years to come!
  • sasi-alford  Aug 9, 2013 2:59 PM
    ive just started rebif after being on avonex i just trust in my murologist but im sure i should make some choices
  • bobo   Aug 9, 2013 3:00 PM
    I too think I should participate for benefit of younger people with recent diagnosis of MS. I am doing well on my current Rx but hesitate to upset my applecart. I feel guilty for being selfish....
  • Kim   Aug 9, 2013 3:07 PM
    I am awaiting results on an MRI done this week due to some new symptoms. It appears that maybe my current treatment might not be working for me. I would like to get into one of the clinical trials yet I am concerned for safety. I know that there are some drugs with some pretty serious side effects. I have young children to think about and how to care for them if the effects are harsh. Either way I am possibly looking at a new treatment. I know there are occasionally drugs which are used in Europe and then need to be studied here, so if there is established safety I would be more likely to try that type of study. I will admit I would really like to be involved in one of the studies using estriol or maybe a new study will be looking at gut flora and how to influence that. I would do either one of those as soon as I could. Right now I have to seriously consider a new treatment which makes me sad since the one I am on, I feel like I had no ill side-effects from and I really need one with the least side effects.
  • Tracy   Aug 9, 2013 3:22 PM
    I participate in a clinical study. I elected to participate to help myself and potentially others in the future; however, I have been dissatisfied with my results. I have had five relapses (three severe, one moderate and one mild) in a year and a half. My doctor suggested at one point that I may need to switch to Tysabri. After my fifth relapse I consulted again with my doctor and requested I switch to another therapy. My doctor has changed his tune about me coming off the study. I am beginning to wonder if this is related to the financial aspect. I fear he is more concerned about the financial support he receives for conducting the study than about my health. Needless to say I am considering a new doctor.
  • David Binford   Aug 9, 2013 3:30 PM
    I'd like to participate in a clinical trial...I've had MS for 27yrs and I'm sick(excuse the pun) of it!
  • Libby McCullough   Aug 9, 2013 3:43 PM
    I considered doing a trial. Some people died. It was for Tysabri and I never felt guilty again. My son said to me " you can't do something that is worse then the MS."
  • Paula   Aug 9, 2013 4:57 PM
    I'm taking part in a trial for a cheaper version of Copaxone. It is a double blind placebo trial. For for 9 months I don't know what I am taking (could be Copaxone, new version or placebo) then for 15 months I get the new version. I live in the UK and my MS has been deemed to not be bad enough to give me any treatment!! For me the choice was simple, get the chance of a drug or take nothing. By taking part in the trial as well as getting the chance of a drug I am getting appointments most months with my neurologist, a telephone number to call if I have any problems, frequent MRIs and am being well looked after. A taxi picks me up at my door and drops me off each time. Before I went on the trial I had no idea who to ring if I had any problems and was pretty much left on my own to figure it all out.
  • alli   Aug 9, 2013 5:34 PM
    I participated in the clinical trial for filgolimod the oral pill for ms, it was passed and I am now on the extended trial.
  • David   Aug 9, 2013 5:54 PM
    After I was diagnosed with MS in 2010 I was asked to participate in a study trial for the effectiveness of terifluminide in remitting relapsing MS sufferers.(It was apparent that previous incidents from my past were obvious prior relapses qualifying me for the trial.) I was eager to do my part to help. I'd not had any previous treatments so this was the first time I'd be doing something that may or may not be aiding my condition.
    I was fortunate that my symptoms were not too severe follow this relapse so I thought it was only the right thing to do to take part. I thoroughly enjoyed my time on the trial; I felt cared for and knew that if I had any questions about anything related to my condition that the team were on hand to answer. Given that the transition to understanding this complex condition can take a lot out of you emotionally, this kind of support was invaluable to me. I don't believe I would have received this kind of first-line treatment if it weren't for the trial.
    Near the end of the trial it became apparent that I may have been adversely affected by the medication I was on (so likely it was NOT the placebo dose) and was asked to be taken off the trial due to how it was impacting my liver (shown through blood tests). You'd think I'd be concerned but everyone went into overdrive to ensure I was okay. I entered into the washout stage of the trial and was monitored weekly (and sometimes three times a week) to ensure my liver function was returning to normal. I did not feel bitter about this turn of events, just disappointed that I wouldn't be able to continue with the medication when in went into the extension study stage (I believed I was taking the real thing for some time and the actions of the team at this stage confirmed it in my mind).
    I now know that terifluminide has made it onto the approved list of treatments for MS and many people are benefitting from it. I know I did when I was 'taking it'. I also know that anyone starting the treatment has to be screened for the first 3 months to check for liver function variations - this would not have been possible if I and the few others that were affected in this way had not participated.
    Since ending the trial I've been put onto copaxone injections which I find frustrating - I prefer oral treatments. Due to my potential issue with liver functions my neurologist advised that this was currently the only viable option - I'm looking forward to them saying it'll be okay to inject larger doses a few times a week instead of small amount daily!
    Would I start a new trial? Absolutely! Whilst I'm still in a relatively fit condition I think I should do my bit to help others and get us closer to finding a permanent cure. The only difficulty I have is my past record of potential liver function variants - a lot of the current trials are based on the same pharmaceutical family and would likely have the same effect as the terifluminide had on me.
    Ultimately if you're unsure, I'd say don't do it. As we all know a positive attitude is one of the most helpful combatants for MS - so be sure, be (relatively) happy and do what you think is best for you at this time in your life and condition.
    I hope this post helps people considering to take part in a study to know that even if things don't work out right because of the potential side effects that you will be taken care of and looked after.
  • rob smith(pseud)   Aug 10, 2013 12:23 AM
    I agree with you Jennifer. I had to struggle with the same issue when I was recently diagnosed in 2002 adn after. However after I foudn the right drug for me (Extavia---interferon b), I stopped with the trials. YOU shdould look after youself first! I think a trial is good for peopel that have not yet foudn their right treatment. I dotn think this is selfish at all....best wishes and hug rob
  • Scott   Aug 10, 2013 6:16 AM
    This is my 3rd month in a trial for Laquinimod, a oral drug. They pay for all my MRI's, blood work, and watch me closely. I will be in the study four years. When the drug is approved within the next two years it will sell for 80k a month. I have had good results so far, and feel well. No more shots! I was on Betasyron every other day.
  • Jerrie   Aug 10, 2013 9:13 AM
    A few years ago, I participated in a blind trial (neurologist doesn't know if I was receiving the real thing or placebo). I haven't felt that good in years and am certain it was the real thing. If I were to present relapse issues, he would have taken necessary measures or pulled me off the trial. I believe the research is important; however, you do have to weigh in your particular situation, such as family needs. My children were finishing college and my husband was supportive, as well as several treatments we'd tried weren't working. So, it wasn't a difficult decision for me. I wish the company would hurry and put that drug on the market because it was a wonder drug for me and I have not done so well since coming off it and onto others. Your family and financial situation have to be considered first.
  • Janet Passman   Aug 10, 2013 2:02 PM
    Jennifer, I feel the same way you do. I have been on Avonex since it came out and it has been wonderful for me. I have had MS for 48 years now and I am still mobile at 70!
  • Bernadette La Corte   Aug 10, 2013 11:48 PM
    I participated in the clinical trial for Dextromethorphane Quinidean last summer. I didn't feel any different during, and after the study. It was a positive experience.
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    lisaseng0627  Aug 17, 2013 5:43 PM
    I am diagnosed since 2010, doing well enough, except for a huge flare in 2010, { got my diagnosis from that one] am going into another now, could it hurt to try something new, only one way to find out, I will give it a go.
  • Rick C.   Sep 3, 2013 11:47 AM
    I am currently in a trial fo a drug that has been used for RA for the last decade or so. It was a difficult screening process and I had to be off of all other MS meds for 2 mos before it started. I was previously taking Copaxone but stopped in June. I never got much relief from IV steroids and thought the recovery from the drug was worse than my symptoms so I figured I had nothing to lose.