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CGRP (erenumab) - side effects (especially cancer)?

Dear people,
I was involved as a patient in the recent research about this medicine. The doctors told me beforehand that they did not know nor expect any side effects.
During the use (for 1 year I got the injections) however I did experience strange health issues: losing more and more weight, muscle spasms, and eventually cancer which had probably developed very quickly. Doctors kept denying that these could be side effects.
However, I did read on the internet that more people had muscle spasms. And when I quit the medication, I started gaining weight quickly. I also read about cardiovascular disease that could be a risk. Nobody told me about that either...
Of course, I am wondering about the cancer now. My doctors will probably not be honest about this - so I would really like to know from others if they have maybe experienced this as well.
Or maybe in the future; please let doctors know about all your possible side effects. My doctors refused to mention all my side effects in this study, saying that they were not side effects.

  1. Hi,
    First, sorry to hear of the unfortunate experience you had in the study.

    I just got on Aimovig this week and I'll be monitoring things carefully going forward (my day job is scientist), especially after reading about your experience.

    I do have some questions on your experience: can you share any more information? For example, do you have a family history of cancer? What type of cancer? Did you have any sort of baseline testing prior to starting?

    Also, not really defending your medical team on this one, but as well tested as everyone says Aimovig is, they just don't have that much data, i.e., the study published in the NEJM has n=955... and even then, 1/3 were assigned the 70mg dose, 1/3 the 140, and 1/3 was the control group. The phase 3 trial had n=570. Phase 2 had about 380 people in the trial. Phase 1 had 667.

    Since phase 1 completed back in 2014, thats the group I'm hoping they're watching with a microscope right now. Were you in phase-1?

    1. Thank you for your concern. My polymyalgia is till bothering me but I am now on a prednisone taper and it is improving. My doctor feels Aimovig will be in my system another few months. I do believe it does impact the immune system. Also of note, I recently had a bladder infection (I never had one or a UTI of any kind before) and after completing my antibiotics, it returned/never went away and I needed to start a different antibiotic. I haven't had a drug resistance to anything since chronic sinus infections in 1995. This could all be coincidence but it should be noted. I hope you are all also doing well.

    2. Yes, it should definitely be noted. This does sound like it can have a big impact on your life (and that of others). Thank you.

      I am doing ok at the moment, but my life will never be the same again.

  2. I have the Aimovig to use, but am hesitant after reading about your experience, Caviaxxx. Where did you inject..
    leg, arm, stomach??

    1. I used Aimovig for 2 months when it was released to the market this yr. After experiencing strange side effects, my doctor will no longer allow me to continue to use it until further information is found. Approximately 3 minutes following the 1st injection (in the my right thigh), my lips from midline to the right went numb and tingled as did my right shoulder. It felt like Novocaine wearing off. This lasted about 20 mins in my shoulder and 1 hr in my lips. The 2nd month, I injected my left thigh. At 3 minutes, my tongue from midline to the left went number and at 4 minutes it spread to my lips and the entire left side of my face as well as my left forearm and hand. Again, it felt like Novocaine wearing off - no paralysis or anything. This time it lasted for 1 hr in my forearm and hand and almost 3 hrs in my face. My doctor and the pharamists are unsure at this time if it is an allergic reaction but my dr. is not willing to take a chance as it could be a worse reaction the next time. As for other side effects: I also have polymyaglia rheumatica and since starting the injections, I have had a flare up in the joints in my hands - could by incidental. I just wanted to share this info. I still believe in these injections and hope I can try them again. I wish all who are taking them well!

      1. I’ve just taken my second 140mg dose. Thus far, no improvement in my chronic migraines. In fact, I feel the intensity/severity of my migraines have gotten worse. I’m sensitive to side effects (failed all first/second line therapies for nerve and migraine pain because of significant side effects—did not tolerate). I’m cautiously optimistic about Aimovig, but I do have concerns as I have experienced increased joint and muscle pain. My case is complex and it’s frequently difficult to properly and quickly identify the trigger for my pain and symptoms.

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