Today I was interviewed by a lovely woman, exactly my age it turns out, for Prevention Magazine. She wanted to know about my experiences with the CGRP trials for a story that is going to run in the March issue. While talking with her, I would launch off on some tangent or another, about my hysterectomy, or I’d slip and say the drug company name from the second clinical trial which I don’t know yet if I’m allowed to do, or mention my controversial pain management plan (yes, I use opioids). “Wait!” I’d say. “Off the record.” I wanted to make sure I tempered my comments to continue to provide hope in these new meds, but also not too much hope. As I emphasized to my interviewer a number of times, there is no cure for migraine disease, but the CGRP drugs may help us to maintain and reduce our symptoms better than anything we’ve ever known.
My unrelated heiplegic migraine
When I wrote my second post-CGRP article for Migraine.com, it freaked people out on Facebook, and for good reason, because I basically stated that after the second trial drug had been discontinued I was hospitalized and then had my first hemiplegic migraine. Hemiplegic migraines are rare and scary. I absolutely do not think that this extreme, bizarre thing that happened to me would happen to anyone else discontinued from any of the CGRP drugs, and this one is the last of them in the pipeline; it could go through a lot of changes. I also had only a five month break between the Amgen trial (erenumab) and the second one, and the two drugs’ mechanisms are completely different, which perhaps leant itself to some weird effects, but of course I don’t know. I was asked to jump into the Facebook comment thread and reassure, which I was happy to do, and I knew I should add something reassuring to the story itself. Which I did. And changed the title so that the hemiplegic migraine did not seem so directly related to the CGRP. And honestly, it probably wasn’t.
Realizing my responsibility
I have only been writing for Migraine.com for just over a year, and I’m not quite used to having the wide national audience that comes with it. Writing for so many gives me a responsibility. Having participated in the two CGRP trials gives me a responsibility. Kerrie Smyres, whom I’d corresponded with some about a preventative I wanted to try and whose blog I’d been fangirling over for years, interviewed me for Migraine.com because I had been posting on Facebook and blogging about the clinical trials and she knew how curious everyone was about the new drugs, the first preventatives to be developed specifically for migraine. In our extensive email correspondence I first learned of this responsibility when Kerrie asked me to re-word something I’d said in a less-than-clear way. “We don’t want to take away people’s hope,” she said of the implication coming from my careless statement, which was a revelation to me. My own blog on WordPress has something like 300 followers. I’d never had to worry before about the migraine community at large. Thanks to Kerrie’s wonderful article about me, I am now a patient advocate myself on Migraine.com, and I’m still getting used to my words being read by, and affecting, so many people.
Knowing that migraine differs person to person
My own migraine disease is so much different from everyone else’s. We are all so different, especially those of us who are chronic and have been suffering our entire lives. I’m 44. I’ve had migraine for 40 years. There are a lot of aspects of my disease that after years of experimentation I know need a different style of treatment than I would ever recommend to an average person with migraine unless I knew for sure that they had tried everything that I have tried. For example, opioids are not recommended for migraine treatment. Hysterectomies are not recommended to treat menstrual migraine. However, both of them have helped me to improve in my own situation.
Hopeful for the future of migraine treatment
It’s been so long since any of us have had any hope, and there IS hope, both for me and my weird, inherited lifelong disease and also new younger friends who were diagnosed recently but are already chronic. There is hope for people who get one migraine a month or twenty. I fully believe that these medicines will change the entire frontier of migraine treatment.
Sharing my experience with a CGRP clinical trial
So when I say that after the second trial I had a horrible month, remember that it’s only me, in my weird situation, and that it is extremely unlikely anyone else would have the same reaction (and in fact my study coordinator said no one has). Remember too about my good month, in February, when I essentially had no severe migraine attacks during those four weeks after one of my treatments. In the second trial, every month was a different dose, and sometimes a placebo, because they were tracking how whether a “loading dose” once per month or several months of lower doses worked better. In my first clinical trial, I never got to try a higher dose of the erenumab, so I would have to assume that would have worked better than the 20% improvement I had. I also think we don’t have to worry so much about the cost as some of us are, because if insurance companies won’t cover these medicines no one will have access except for the very wealthy, and then the drug companies wouldn’t make the money they are counting on.
I promise to continue to keep all of you in mind as I discuss my experiences, with CGRP and otherwise. We only have a little while to wait now; maybe only about a year for erenumab. For me that is a tiny percentage of the time I’ve suffered and for most of you as well. Hang on, friends. Hang on.