my experience with Emgality

[mark m]

Back in February of this year my neurologists decided to try me on emgality at 300 mg each month for 3 months. The first month I took the medication I had zero migraines at first then as the weeks went by I started getting cluster headaches totally off season for me since my cluster headaches are every three years for approximately 18 weeks and I had them last year.  The clusters brought on by this drug were not normal for me in other ways too. My normal clusters hit hard level 10 last about an hour without medication (imitrex) and I get them multiple times over the course of each day and night. yet the ones caused by the emgality were approximately 2 per day (24 hours) and rarely passed a 5 on the pain scale.  after the first time I took it the second month not realizing it was in fact the drug due to me having a root canal done in the first month. The second month the clusters got worse right after taking the second dose and I noticed other side effects such as eye strain, joint pain all over and some stomach issues. as the month progressed I noticed the clusters got less intense and then I took the third dose and it got worse again only this time my migraines were normal as before I tried this medication so now instead of helping at all it just made life worse for me. So in closing I would not recommend this drug. Hope this helps someone, Mark

[RickJim]

Hi Mark - I had a very similar experience as you described. Emgality worked at first and then it made the headaches worse. When I stopped the medication my regular cycle came worse than ever and for the full amount of weeks as before but totally off season.  I feel that Emgality just pushed my cycle and made it worse.

[mark m]

Thanks for your reply I really don't like feeling like I am the only one with bad experiences due to medications. So I appreciate your response.

[lbh]

I’m piping in here as well. I’ve been episodic since 2008 and was very excited when Emgality was approved. I go into cycle every 1-2 years, and while my cycles began as a 6 week period, over time they have lasted months and been difficult to shake (some of that is my fault, as I am generally impatient with verapamil and prednisone due to the side effects, and trying other medications has historically made me sicker). 
 

I went into cycle in October 2019 and immediately began Emgality. I took it for 3 months with absolutely no noticeable side effects, and by mid January of 2020 my cycle was gone. I counted that as a victory and was delighted. However, I started shadowing again in July and restarted Emgality. I took it in July, August and September. By mid September I noticed that my digestion had completely stopped and I was gaining weight. By beginning of October, my cycle had started anyway. I stopped the Emgality and have been fighting since October to put this cycle down with prednisone and verapamil. I recognize the Emgality helped me get rid of it last time, but this cycle came unusually fast, had lasted unusually long, and is behaving strangely (side shifting, hits separated by days, odd facial sensations). I attribute all that to the Emgality so am hesitant to take it again. 
 

I’m very curious to hear others’ experiences. The docs don’t know anything because the drug is so new. We’re not going to sort this out unless we share it on the forums.

thanks 

[jon019]

5 hours ago, lbh said:

 

I’m very curious to hear others’ experiences. The docs don’t know anything because the drug is so new. We’re not going to sort this out unless we share it on the forums.

ABSOLUTELY!....

[Cast Iron]

You’re so right that the results have to come from the forums, as the results of the med trails are always statistical and most of the times not first hand by trail participants. I’ve been in the Aimovig trail in 2019 and Emgality trail in 2020. On both occasions trying to break my cycles as the meds (verapamil, naratriptan, sandomigran, prednisone, D3) I took were not sufficient anymore while the beast was jumping very ugly 8-14 times a day with kip 8-10 very often. I had 5 rounds of Aimovig and it did not break my cycle. It was only when I upped my verapamil from 600 to 720 that I noticed in hindsight brought the relief of ending my cycle. Aimovig had no side effects besides a minor obstipation. The Emgality I took last year also did not break my cycle, in fact this cycle started last year June and is still ongoing now for 11 months. I do not contribute that to Emgality, I believe the beast wants to ‘play’ with me a little longer than normal. I have to say that in my current cycle before I used the Emgality I had the GON injection which also has zero effect, but also no side effects. From the participants in both trail groups I understood that 4 of of 10 had positive results, their cycles did not start. Saying this, my observation is that those CGRP medicines are not meant to break cycles, it is to prevent them. Once in cycle there is little one can do apart from having your rescue meds on stand by and try to ride it out the best you can.

[Freud]

The facial sensation can be your CH. CH is always changing.  My CH began 5 yrs ago w strange facial sensation and tooth pain.  A month later was my first hit/attack....

[Icantdance]

i took the Emgality loading dose a few weeks ago. Got a fever, rash and am experiencing constipation issues and weight gain. Had zero effect positive or negative on my cycle.

[CHfather]

@Icantdance, thank you for posting this.  Many of us wonder how Emgality is working out.  Not that the anecdotes tell a whole story, but they're valuable to know.  And I'm very sorry that it didn't help you.

[spiny]

Yes, it is very important for the community for those who have taken Emgality to post their results. I too thank you Icantdance!! 

[Icantdance]

I just injected my 4th dose of emgality. No positive impact. Still causes many side effects for me, including fever and achey joints, upset stomach and constipation, a feeling of closed in. Also, increased intensity for hits several days after the shot.

[spiny]

Yuck! Are you going to give it up? It appears that you are only getting negative results. 

[Icantdance]

4 hours ago, spiny said:

Yuck! Are you going to give it up? It appears that you are only getting negative results. 

Yes, I do believe that will be my final shot.

[Ricardo]

Dr. Lawrence Robbins of the Robbins headache clinic wrote this piece about a year ago.  He has been one of the biggest prescribers of these drugs and at this point is saying that "Some headache providers feel that the CGRP monoclonals are safe and adverse effects are infrequently encountered. Others believe, as I do, that the mAbs result in a number of deleterious effects."

He also said "After assessing the various post-approval lines of evidence, there are signals that the following adverse effects may result from the use of CGRP monoclonals: constipation, anxiety, injection site reactions, weight gain or loss, worsening hypertension, increased headache, insomnia, depression, hair loss, joint pain, fatigue, irritability, muscle pain or cramps, nausea, rash, sexual dysfunction, and tachycardia (or other heart irregularities).  Most likely there are others as well.  In addition, there have been cases of reversible cerebral vasoconstriction syndrome and stroke. Angina and myocardial infarction have also been reported. Thomas Moore, a leading expert in the acquisition of adverse effects of drugs, published a review of the CGRP monoclonals in the online journal QuarterWatch. QuarterWatch utilizes various resources, including FDA reports and published post-approval studies. (5) The report cites the “sheer number of case reports,” and concludes that “…it is likely that adverse effects of this migraine preventive were underestimated in the clinical trials.”

These meds have now caused at least 40,000 serious adverse events and the number of people that I have talked to that completely regret taking this medication is huge.  Some of them are still suffering long term effects from it.  

And for what it's worth, I agree with Dr. Robbins.  If we can have a medication that has this many bad side effects but prescribers still end up convinced that the worst effects are mild constipation, than our system is broken.  

Once again, cluster headache patients will need to rely on each other to keep ourselves safe.

https://southernpainsociety.org/adverse-effects-and-clinical-trials-the-system-is-broken/

 

-Ricardo

 

 

[Juss]

This 16-page journal will answer all of your questions on CGRP, and Emgality. From Brain Sciences: Calcitonin Gene-Related Peptide (CGRP) and Cluster Headache Published January 6, 2020

https://mdpi-res.com/d_attachment/brainsci/brainsci-10-00030/article_deploy/brainsci-10-00030-v2.pdf

I go with what I know, 100mg of Toprimate (proven superior in migraine suffers to CGRP), and if shit gets real I push 200mg. I tried all of the CGRP’s but Emgality-the fat, bald, and deleterious side effects, no thanks. 

 

[Juss]

I am surprised that no one discusses LDN, Low Dose Naltrexone. I have used Naltrexone for a few years for complex pain and impulse control, the results are impressive. I do not require APAP (Tylenol): nor do I know of a doctor that would recommend that you take it. Here is a journal from 2021. I am not a doctor but avoid acetaminophen, which is well beyond overkill. All that Tylenol does is destroy the gut wall and liver. 

https://www.medrxiv.org/content/medrxiv/early/2021/04/01/2021.03.23.21254186.full.pdf

Naltrexone is an opioid blocker available since 1984. Liver failure is exceptionally rare, far more common in the atypical olanzapine, which is almost guaranteed. Naltrexone toxicity occurred, of course, in those with shot livers (drunks and junkies). What do you expect?

I do not understand the sleep disturbance. My sleep score averages 88, which is good.  I have panic disorder. Naltrexone does not foment anxiety. If it makes you tired, please inform me. And, Naltrexone aids in reducing all forms of headaches. You can use synthetic analgesics: I can take up to six, 50mg Tramadol per day, with Carisoprodol. 

[Juss]

I forgot to mention that I am off-label with Naltrexone and at what most consider a very high dose, 100mg. If you knew my history, you would understand why. My results, nonetheless, are impressive. To be fair it could be Sodium Polypharmacy. I believe that the “wigging out cocktail” helps as well. 

Edit: someone sent a message saying that I should never talk about certain drugs like I’m telling you to take them, blasé blasé. Anyways to appease a non board member I removed it. Look, you don’t have to take me literally. 

 

 

[xxx]

Emgality (Galcanezumab) Study - Trigeminal sensory modulatory effects of galcanezumab and clinical response prediction

Arne May et al.  Feb 2022 ResearchGate

https://www.researchgate.net/publication/358667291_Trigeminal_sensory_modulatory_effects_of_galcanezumab_and_clinical_response_prediction

Abstract.  Galcanezumab, a monoclonal antibody against calcitonin gene-related peptide, is an emerging migraine preventative. We hypothesized that the preventive effects are conveyed via modulation of somatosensory processing and that certain sensory profiles may hence be associated with different clinical responses. We recruited migraine patients (n=26), who underwent quantitative sensory tests (QST) over the right V1 dermatome and forearm at baseline (T0), 2-3 weeks (T1), and one year (T12) after monthly galcanezumab treatment. The clinical response was defined as a reduction of ≥30% in headache frequency based on the headache diary. Predictors for clinical response were calculated using binary logistical regression models. After galcanezumab (T1 vs. T0), the heat pain threshold (HPT) (°C, 44.9 ± 3.4 vs. 43.0 ± 3.3, p=0.013) and mechanical pain threshold (MPT) (log mN, 1.60 ± 0.31 vs. 1.45 ± 0.26, p=0.042) were increased exclusively in the V1 dermatome, but not the forearm. These changes were immediate, did not differ between responders and non-responders, and did not last in one year of follow-up (T12 vs. T0). However, baseline HPT (OR: 2.13, 95% CI: 1.08-4.19, p = 0.029) on the forearm was a robust predictor for a clinical response three months later. In summary, our data demonstrated that galcanezumab modulates pain thresholds specifically in the V1 dermatome, but this modulation is short-lasting and irrelevant to clinical response. Instead, the clinical response may be determined by individual sensibility even before the administration of medication.

Dr. Arne May, MD, PhD. has been a member of the ICHD-3 Working Group on Trigeminal Autonomic Cephalalgias for many years.

 

 

Take Care,

V/R, Batch

Edited March 1, 2022 by xxx

[Juss]

 Here is “An Overview of New Biologics for Migraine Prophylaxis” from the journal US Pharmacist

https://www.uspharmacist.com/article/an-overview-of-new-biologics-for-migraine-prophylaxis

I don't post abstracts. Bluntly, you can click on said link. I found it, and have access to it. 

[Juss]

Different Doses of galcanezumab versus placebo in patients with migraine and cluster headache: a meta-analysis of randomized controlled trials

https://thejournalofheadacheandpain.biomedcentral.com/track/pdf/10.1186/s10194-020-1085-x.pdf

Efficacy of galcanezumab in patients with migraine who did not benefit from commonly prescribed preventative treatments

https://bmcneurol.biomedcentral.com/track/pdf/10.1186/s12883-021-02196-7.pdf

 

[Kaitlyn]

I’ve been on emgality for a year. Significant decrease in migraine days. I get a rash at injection site that only ice can soothe. Comes mostly at night days after injecting, extremely itchy.

My question is, has anyone noticed nodular acne as a side effect? I have always had acne issues, but never huge, under-the-skin acne. It’s all along my chin. 
I did not take my dose this month because I am planning to become pregnant and getting off the medication. I am noticing a significant decrease in nodular acne. I wonder if Emgality has been the cause. 

[Catherine Daniels]

Question, anyone have bladder issues, by my 3rd injection I began having bladder spasms non stop.  Went to obgyn I figure my bladder dropped but everything healthy.   Prescribing Dr said has not heard of bladder issues but no other reason for this to happen, not taking any other drugs.