Last reply 1 year ago
Participate in clinical trials ?

Hey guys,just wanted some advice. After being diagnosed in march i started avonex in september (this bein my drug choice purely because in the next 2 years i wnt to start a family and tbh the side effects of the more effective drugs scared me!) . Although i feel the side effects i get from avonex are nt that bad (mainly the chills and a general tired feeling witht the occasional headache for about 12hours max), i have seen that they are recruiting for the final trial stage of the new ocreliuziamb drug and i am really eager on participating. However jus wanted to know if anyone has participated in clinical trials? What was your experience? And although a niave question, is it safe at this point?
Thanks x

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leighlincoln
2 years ago

Hello,

Sorry unable to help as no info on clinical trials. As I’m over 65 years of age I’m deemed to be “to old” wish I was too old for this rotten disease.

My first drug was Avonex, which I took for a a few years. Unfortunately it wasn’t the one for me so now on
Tecfedira

I think if I was in your position I would learn everything possible about the drug trials before any decision and hope somebody on here can help you.

Good luck in starting your future family.


stumbler
2 years ago

@lotusp , here are some general details about what is involved in clinical trials :-

https://www.mstrust.org.uk/research/getting-involved-research

There are some details of Ocrelizumab here :-

https://www.mstrust.org.uk/a-z/ocrelizumab

This drug has completed its Phase 2 trials, which focus on the safety profile of the drug. So, Phase 3 trials are focusing on the efficacy of the drug.

If you are able to fit the trial requirements into your life, then it’s a great opportunity to have a chance of using the latest drugs at the earliest opportunity. You will also be closely monitored, something which doesn’t happen outside the trial environment.


juliam58
2 years ago

I’d hoped to take part in the trials for Ocrelizumab too but at 58 also too old as the cut off age is 55! My consultant had talked very positively about it so I am very disappointed and now thinking about asking for Lemtrada when I see him in 3 weeks.
I was on Tecfidera for a few weeks but had gastric problems so had to stop and I’m not on anything at the moment.


luisamills
1 year ago

Has anyone taken the drug and if so how did they find it? I recently (November 2017) got diagnosed with RRMS which was a huge shock. I am under 30 and extremely active, I have been offered the drug however I would very grateful to communicate with someone who has experience with the drug in order for me to make an informed decision.


stumbler
1 year ago

@luisamills , the following link will take you to the previous Forum posts regarding this drug:-

https://shift.ms/category/treatment/ocrevus

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