Last reply 11 months ago
Clinical Trial Participation

Hi there!
Well, the story is all the same – had several “incidents” over the last 5 years, got another case of optic neuritis this September, MRI-MRI-Bloodwork-Lumbar puncture and boom! Multiple Sclerosis confirmed last week. I saw it coming so I am quite relieved, to be honest, to have it “on paper”.
I have an appointment with Neuro this week, to discuss DMD, but clinic where I was sent for second opinion has offered me to participate in clinical trial. That would be phase 2 trial, without placebo. Idea is to “take” 2 DMD drugs simultaneously in a double blind test, pills + once a month injection, where one of the treatments would be “empty” – either real pills + fake injection, either fake pills + real injection. Anyhow, haven’t been to the meeting yet – don’t have too much information but I suspect injection to be Zynbrita (daclizumab).
Has anyone participated in clinical trials? Would you recommend participating in clinical trials? Does it mean “fast track” to doctor and shorter appointment waiting times? Tips, areas to research, necessary questions to ask and think through?
Thanks everyone!

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ellenmay
11 months ago

Hello
All clinical trials have their own format and you are monitored closely,for your safety but also for assessing the usefulness of the drug. Before you make any decisions for or against, you need to be in possession of the facts unique to your specific trial. Time commitment to appointments and how many, is a factual consideration.
Good luck with your decision making
๐Ÿ˜Š


stumbler
11 months ago

Hi @valentina_haritonova and welcome.

Clinical trials can be beneficial in two ways:-

1. They allow the advancement of medical science in proving the efficacy, dosage and tolerance of new drugs; and

2. It allows you to potentially benefit from the latest drug advances, whilst being monitored more closely than a normal MSer. If the trial is successful, you may be able to continue the treatment.

There is a definition of the various phases of Clinical Trials here, https://www.nlm.nih.gov/services/ctphases.html , which suggests there may be some risk. But, in mitigation, you will be closely monitored and have easy access to support.

Participating in Clinical Trials is a personal decision, which will obviously be the subject of discussion with your partner.


vasy
11 months ago

ะŸั€ะธะฒะตั‚. ๐Ÿ˜‰

It’s hard to say anything without knowing trial protocol or drug name at least
I can’t find any trial of daclizumab combinations on clinicaltrials.gov


valentina_haritonova
11 months ago

Hi all, thank you for your replies! The trial is for aubagio/arzerra (teriflunomide/ofatumumab) in comparison, double blind. I have decided not to participate, because of fertility complications with arzerra (we have no kids yet, but planning in coming years).

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