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shahooty

I have a chance to be in a clinical trial, but...

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Looking for advice.

I have a chance to be in a clinical trial for something that shows promise. But it means I can't bust. No mushrooms.

There's a fifty fifty chance I get the drug. Fifty fifty I get placebo. But the upshot looks great if I get the meds.

Just worried if I get placebo I'll have to make it through the trial with nothing but oxygen.

What to do?

Thanks

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Shahooty,

You're a better person than I.  Your reasoning is the exact reason I could never bring myself to partake of a drug trial.  Hopefully someone does (and do) take part in trials, otherwise we'd never get closer to a mainstream treatment.  Your and others sacrifices are noble beyond words.

J

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Your and others sacrifices are noble beyond words.

Jeff's statement bears repeating.

I am too old to take part in the upcoming trials. I tried.  :( Will they let you do the D3 regimen? That has helped reduce the severity of my hits. Just a thought.

Thank you Shahooty!!

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My Stanford Nuero Doc took my name for a trial and I think I will go for it.  I'm a newbee to this thing and just amazed at the pain that these CH bring on.  If the trial works and it helps the rest of those who aren't fortunate enough to have health insurance that allows O2 and meds then it was worth it. 

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Found out the trial is for an anti-CGRP therapy. New info is that I have to wait for two weeks, writing in a journal before I get the injection. That's two weeks with just oxygen and imitrex injections. No pills. I usually use Frova at night and I am able to sleep through the night.

Not sure I can do two weeks just for a fifty fifty shot at something that may or may not work. Blarf.

Not sure what to do. Might try. So far this round of clusters hasn't been as bad as I've experienced in the past. I've gotten up to about a 7 and the oxygen has been working really well for me. Aborting the headaches a lot faster than it has in the past.

I'm just worried that I'll get too deep into this cycle as it builds steam that if I do decide to use mushrooms in a week it's going to be a lot harder to break out of it.

I keep thinking I need to do the trial so that in two years this stuff will be available for everyone. Take one for the team.

I'm basically just thinking out loud right now.

Beep.

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I'm not sure didgens, I'll try to find out at my next visit. But I have another question for you guys.

 

The drug they tried is one of the anti-CGRP antibody drugs. I either got the placebo, or it's not working for me.

 

I have used nothing but Oxygen to stop my attacks for the three weeks I've been in this trial. Wondering if I can still bust with mushrooms, or if the mushrooms and the anti-CGRP antibodies will conflict with each other. I think I received the Placebo anyway, but in case I got the real stuff, do you think I'm safe to do my normal dose of mushrooms?

 

Thoughts/advice appreciated,

Shahooty over and out.

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The Eli Lilly clinical study is a phase III study.
If you are in the study and have received the injection, you should not try any treatments without consulting with your doctor first. They should have given you instructions on what is allowable and what isn't while you are in the trial.


Best of luck,

Bob Wold


 

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Hi Shahooty. Wondering how the clinical trial is going for you. Like schlossd, my husband has an opportunity to do the trial at Stanford. How long does the study last?

Wishing you all the strength to get through the trial! God bless you for giving it a go.

-byhisside

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