Trials - how much luck do I need

Have regularly read about others on MS Trials and or commenting on one that they completed. Some have even got onto several trials. Whilst I am genuinely really happy that a fellow MS sufferer has been successful in getting onto them I am more and more annoyed and frustrated for myself.

I visit sites that the MS Society, MS Trust and others advice me to go to that list trials and do all that is required. I still cannot get onto any trial! Am I missing a trick? How lucky do I need to be? It is really cheesing me off. I hear of trials too late, my Neuro and 2 MS Nurses are regularly spoken to.

I have PPMS and see no hope to be honest now of any treatment apart from symptomatic care from MS Nurses. An existence not a life.

Never been particularly lucky in life so guess this should have been expected. Sorry for my rant

PPMS has some ongoing trials with Ocrevus. But the criteria doesnt suit me either. You have to have had it for less than 15 years and still be mobile.

That cuts me out. But to be honest I have heard the side effects can be quite nasty, so Im not too concerned.

But if you would like to be included in a trial and you cant be, for whatever reason, then I feel for you.

B​oudsx

You could do worse than take a look at ldn as a possible treatment and see if you think it might help. My GP started prescribing in 2004 and convinced it has eased symptoms and slowed down progression.

https://www.ms-uk.org/choices-low-dose-naltrexone-content

Rant away Giova,

I do think that luck does play a part in the opportunities, BUT you can make a fuss with your GP / Nurse / Neuro which if done well (and a bit of luck) can promote you up any consideration list. I used to stay quiet and never got involved in trials. Friends and family urged me to be more proactive in persueing numerous therapies and options. With the support of my helpful team of professionals I have been involved in some trials. No massive benefits but at least I felt that I was doing something.

Good luck

Mick

slightly o/t - the frustrating thing about these trials is they never seem to reach a definite conclusion!

1 Like

my last trial had a definite conclusion that Tysabri was insufficiently effective in SPMS to be economically viable. The pharmaceutical company pulled the plug pretty rapidly after 15 months of poor numbers!

M

Hi Bouds

Thanks for the heads up. Ocrevus has already been licenced by NICE though. I was diagnosed with PPMS three years ago and I am still mobile. This is a good example. Why have I not found it, it found me it my Neuro ask me about it?

I just don’t get it. May I ask where you have seen it so I can look over it and maybe apply for it. Side effects don’t bother me but what this PPMS has in store for me does though.

I feel like I’ve been out to dry.

xx Giova

Hi whammel

LDN has been on my radar but havent got my head around the procedure required to attempt to get it. I thought only a few pharmacies could prescribe it, one of which was Dickson in Scotland. May I ask how you have got your GP to prescribe it because I thought they couldn’t.

Thanks

Giova

Thanks Mick.

That does sadden me a bit though because surely our “health professionals” should be doing that for us. In my case I don’t know where I would start. My GP and MS Nurse are in Kent where I live and my Neuro in London with no connection to each other. Every time that I have asked them to help me with getting something from the Neuro they say that they have no influence with him

Thanks

Giova

Hi Mogace

May I ask how you managed to get onto the trial?

Thanks

Giova

Hi Giova,

My neurologist actively watches out for trials and ongoing studies or research. He asks his patients if they would be interested in any appropriate trials. I have enough confidence in my neurologist to listen if he thinks a particular trial is worth it. If you have good communications and confidence in your neurologist you could ask them to keep an eye open for you. You can always be proactive in seeking trials / studies via the internet but you might irritate your team if you ask them about too many which you might not be suitable for.

Good luck

Mick

Giova,

that sounds horrible and very frustrating. I had 3 neurologists who were not approachable or helpful. I then spoke with a friend who also had MS. He told me about his neurologist and I found that he had a private practice, so I was lucky enough to be able to pay for some consultations. I knew that I trusted what he said. I managed to be referred to his NHS clinic. We looked into 4 trials, only two of which did I qualify for. In both of these trials the medication had no obvious positive or negative effect. If you do get on to a trial, you may not be on the active drug, and you need to remember there can be risks. If the trial is being funded by pharmaceutical companies they are in control.

All the best

Mick

There is nothing to stop your GP prescribing ldn off label, if they consider it is in your best interest. I went to my open minded GP armed with some information to read and she was happy to prescribe, as it was highly unlikely to do any harm. It’s true that most GP’s are reluctant, but the answer is always no unless you ask the question.

If this route fails then private prescriptions are relatively easy to obtain.

Any chemist will get the stuff if you have a script, but Dickson’s can supply ldn at a price that doesn’t rip off the NHS.

Giova, it was my last neuro (the one who diagnosed me after 22 years and 16 other neuros couldnt), who told me I didnt fit Ocrevus criteria.

I did try ldn some years ago, but the benefits were very short lived, so I came off it.

My MS nurse wrote a letter for me to get it prescribed by the Scottish pharmacy.

Boudsx

Boudsx

I’m sorry to hear you’re feeling rotten about this. I was asked by my neurologist twice in the past if i fancied a trial. Didn’t know you could get on them in other ways. I said no both times because 1) you might end up in placebo group and not get any meds at all which i thought was risky and 2) side effects…i didn’t feel a trial was very appealing at all, if you know what I mean?