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CGRPs (calcitonin-gene-related peptide)

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

  • By Caviaxxx

    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.

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  • By sqribblz

    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?

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    • By Caviaxxx

      Thank you all for your kind replies.

      I had cervical cancer. This is caused by a virus. It is known that if your immune system is weak, for example because of medication, it can attack and cause cancer. I would like to know especially if anyone experiences trouble with their immune system. No family history. Tests before the research were fine.

      As I wrote, I know that not al the side effects are known yet. But what I do not find acceptable, is that I have experienced ánd am experiencing a complete denying of 1. possible side effects any different than pain at the injection side, and 2. my side effects, to the point that it was said that it was impossible that they were caused by this medication and they refused to even include them in the research. Where I later found out that my muscles spasms, for example, are now a known side effect. Also, the doctors geve me contradictory information about the effects on the immune system. These points are not ok.

      I think I was in the 3. fase, not sure though.

      I had injections in my arms. But I do not think that this really matters for side effects.

      And the last person, thank you for your message about your side effects. Hope you are doing well now.

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    • By 1jamms

      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.

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    • By Caviaxxx

      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.

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  • By Johurts

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

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  • By 1jamms

    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!

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  • By Texs4

    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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  • By 1jamms

    I hope you are able to find some relief. Please note, my doctor and the drug info state that most people do not find improvement with the Aimovig until month 3-4. I hope your muscle and joint pain is temporary. Mine is still present but improving. It is so difficult when we are “difficult to treat” and have weird side effects that no one else have. So lucky!

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  • By SPupp

    I’m just five weeks in to treatment. So far, no benefit but no side effects either. I tend to have side effects to treatments, so this is a welcome change.

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    • By 1jamms

      So glad to hear you have no side effects! Mine friend is doing well also! My doctor said most people don’t feel the benefit of the drug until the 3rd or 4th month so be patient. Good Luck to you!

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