Discussion in 'Health News and Research unrelated to ME/CFS' started by Indigophoton, May 18, 2018.
Great news! Hopefully this proves to be the major breakthru that many neurologists think it is and that the people who need it are able to access it. I forsee insurance making it a difficult drug to get covered given the high cost.
Would this help things like light sensitivity in ME, perhaps? I'd be curious to know.
I'm very pissed off with these hyped up announcements. The competing companies have massaged their findings and share "facts" which are underwhelming to me as a chronic migraine sufferer. Their "success rates" are barely above placebo!
The stories of complete remission trumpeted in the press are singularities.
There are no long term studies. Nothing past 6 months. I'm concerned about the long term effect of blocking CGRP.
This from the article above:
"DESPITE SUCH ANECDOTAL SUCCESSES, some migraine researchers don’t think it’s time to celebrate yet. If CGRP “really is a fundamental mechanism, you would expect a much higher proportion of patients to be completely free of attacks,” Ferrari says. Safety also concerns him because of CGRP’s natural role in dilating arteries and maintaining blood supply to the heart and brain. “Theoretically, if you block CGRP you could translate a minor stroke or cardiac ischemia … into a full blown stroke or heart attack,” he says. So far, the companies say they haven’t seen that or other significant side effects in the several thousand people who have completed phase I and II trials, but the drugs have only been administered for up to 6 months—not long enough to judge long-term effects, Bigal says."
From neurologist Robert P. Cowan, MD, FAAN
"CGRP is found throughout the body, and in addition to modulating pain, it has anti-inflammatory action and a role in energy metabolism, among other functions, and the risks compound. The list of drugs found to be unsafe following release is long and includes medications such as Vioxx, Accutane, Cylert, Permax, and Propulsid, to name a few. The risks associated with these drugs did not come to light until a wider distribution revealed them. Without a major restructuring of drug trial design or wider and more sophisticated use of computer modeling, it is impossible to predict these unforeseen outcomes. However, the effect of circulating antibodies in patients with unanticipated breakdown of the blood–brain barrier due to injury or stroke and the effect on healing in patients with circulating antibodies and cardiac events or inflammatory disease remains unknown."
EDIT: I put energy metabolism in bold. Yeah, not gonna risk it.
I imagine those who have VERY chronic treatment resistant migraines will be more than willing to take the risk of the unknown long-term risks, and will jump at the chance to try this medication.
There are ME patients who are willing to try treatments for which the risks are not completely known.
I choose to take medications that may cause me serious health issues in the future because as this point I care about quality not quantity.
Good points @Squeezy
My take away is that it could be useful for some, but it's far to early for me to want my daughter trying it. In a decade the knowledge of the risks will be clearer.
Yes definitely. Me too. If my migraines were treatment resistant I'd jump at it. The pain is excruciating. I'd rather have bamboo pushed under my nails than have another 3 day torture migraine. Not joking.
But from the info above, I think these CGRP drugs might pose more than a future health risk. For those who have health problems they could be a very present danger. The manufactures just don't know. Or care. Which is alarming. It's just been a race between the pharmaceutical companies to get their product out first.
I'd like these, and other new medications, to have to be prescribed with BIG warnings that they've only been tested in people who are healthy aside from that single condition. That they only know the effects on the body of this med for a term of 6 months. And have no idea how it will affect those with auto immune diseases, heart conditions, asthma...
CGRP receptors are also found in your kidneys, pancreas, adrenal glands, and bones, and it’s not clear how the drugs will affect them after long-term use.
@Skycloud I'm sorry that your daughter is cursed with these bloody things too. Have we talked about what she's tried? My memory is rubbish. I don't know if it's the Topomax - miracle daily migraine preventer for me, but AKA Dopomax. I'm dopey to da max. Or if it's the ME.
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