Most of the members of Migraine.com are aware that I have been participating in a clinical trial for a CGRP antagonist medication. It is in fact my second trial, the first one having been a double blind and then open label study of the medicine Amgen334. Details of the first trial and the beginning of the second can be found here in this interview of me by Migraine.com contributor Kerrie Smyres.
Before too long, I will be able to reveal the name of the second drug I have been testing, because unfortunately the study is going to be ending. I didn’t want to think about the looming cliff of losing this medication, because it has significantly improved my pain, but I finally did ask my friend and study coordinator, H, at my appointment in March. I learned that I had only two more injections, which would be administered in April and May, and then I would be tracked for a few more months to determine my fate after the medication is withdrawn. This was a study of different dosages and their effectiveness.
A look back to the beginning
When I first began writing for Migraine.com, I wrote a brief summary of each visit to the clinic. A couple of those can be found here and here. Basically, at each monthly appointment I would get one subcutaneous injection, or three; each injection would contain a different dose of the CGRP antagonist medicine, or occasionally it could be a placebo. This medicine has a different method of attack, so to speak, from Amgen334. The injections hurt more, and the solution was thicker, and I could usually feel it a bit more as well, similar to an injection of Sumatriptan. When I went in with head pain, it would be relieved and then would “resettle,” as I called it, with less severity, even though these medicines are preventatives. The first preventatives, in fact, developed specifically for migraine disease. Also at my appointments I would occasionally leave urine and blood samples, and initially I had EKGs of my heart as well. Some visits I would only receive the medicine.
I stopped writing about each visit to the clinic when there was no new interesting information to share. December’s was the last one I described, which also came complete with a near-Christmas rear-ending. I had one more extremely severe migraine in early January and went to the emergency room on January 4. I had been going every four weeks on average. Now, however, it has been since that visit over four months ago since I have had to seek emergency treatment. I do credit the cumulative effects of the current CGRP antagonist as the reason for this respite, which came at a wonderful time since I am having difficulties with health insurance.
Goodbye pain, hello other symptoms
Unfortunately, as is usually the case, with the decrease in pain came an increase in secondary symptoms, particularly depression. I have never known when this happens whether I am at such a loss without frequent migraine pain that I don’t know what to do, or whether my brain chemicals are somehow compensating and producing increased depression rather than pain. I believe it to be the latter. I am also experiencing fatigue, brain fog, phono/photophobia, anxiety, allodynia, insomnia, appetite issues, periodic fevers, occasional tinnitus and autonomic facial symptoms (red and swollen nose) which are all of my usual additional migraine symptoms. I don’t know if I am noticing them more without the pain, or whether they have increased without the pain. This was also my biggest complaint about Amgen334 – my pain was relieved, but nothing else was. And we all know how much additional baggage comes with the pain of migraine disease. These symptoms may be easier to deal with in some ways than severe pain and not require ER visits, but it’s not fun. When I am having all of them at once I tend to take Imitrex or other medications to relieve them, which does work. I also still sometimes spend whole days in bed. I believe I am having an average of 3 – 5 severe migraine attacks per month (requiring at least one full day in bed) down from 10 – 12, and still also occasionally have a couple per week that are definitely attacks but are milder and easier to treat with acute medications. In February, I had only 2 severe migraines. In April they increased again to 8 or so.
Depression is certainly its own monster. In fact I was more able to write articles for Migraine.com when I was experiencing more pain and less depression. I have felt unmotivated and exhausted, and this is the first time since early March I have sat down to write. I did increase my Zoloft, which I have the option to do when needed; I take a medicine for sleep as well. I am starting to feel a bit better. Sometimes I honestly don’t know whether I would rather have pain or the crippling sadness; I think I usually feel I would rather have pain, for which, when intractable, I can at least seek help at the ER.
In a couple of weeks I will go up to the clinic for my last injection of the medication. I will again be given the device with which I track my pain and aura symptoms as well as any acute meds I take. The effects do seem to be cumulative, with the best results happening during the second halves of each study and not wearing off right away when the medication is stopped. There are two new studies H has mentioned, one of an oral CGRP medicine without the side effects of previous ones tried; and one of a different protein antagonist that is not CGRP but similar and has more to do with the trigeminal nerve. I don’t know whether I am eligible for those studies or even if I want to participate. I may just take my chances and wait for the first CGRP drug to be approved, expected to be early 2018, and hope the insurance I will surely have by then through John’s employment will cover it.
And in the meantime, I wait. And continue to hope.