Ddikevin Posted August 25, 2019 Share Posted August 25, 2019 I am a long time episodic sufferer and normally had the two cycles spring and fall. In the last couple of years I had been using prednisone taper and sumatriptan as needed. In the beginning the prednisone worked quickly stopping the headaches within 48 hrs but now it seems like it takes a week or more for it to stop them . This in turn has increased the amount of Triptans I have been using. I noticed a big change this year as I am now in my 4th cycle and it seems like I only get a month break between cycles. I had a discussion with the researchers at Yale and they said that the prednisone and triptan use could be increasing the amount of cycles that I am experiencing. I had heard of Emgality and got a prescription from my neurologist. I got two injectors and stored them in the fridge and will receive one injector every month after that. Maybe two weeks after receiving emgality I felt the shadow signs of another cycle so I decided to try it. I did the two injections and the next day felt very tired. But for nearly two weeks I didn’t have any shadows. One or two days before I had to refill the prescription I had a mild attack lasting 5 or 10 min, very bearable. I refilled the prescription and took another injection and now for a week or so the mild attacks come in the morning and after I go to bed. I am hoping to ride this one out without steroids or triptans and keep taking the Emgality every month as a preventative. I will update here as this cycle continues on Emgality. 4 Quote Link to comment Share on other sites More sharing options...
Psiloscribe Posted August 26, 2019 Share Posted August 26, 2019 Quote 2 hours ago, Ddikevin said: Emgality It sounds like you've been prescribed the migraine dose of Emgality. The cluster dose is 300 mg and comes in (3) 100mg injections. Have your doctor check out the eli lilly website for info on prescribing instructions for clusters. 3 Quote Link to comment Share on other sites More sharing options...
Ddikevin Posted August 26, 2019 Author Share Posted August 26, 2019 Thanks you are correct. I saw the 3 100 mg on the Lilly site after I got my prescription thats why I was comfortable taking the third injection even though I have now taken 360mg over the 300mg. I will notify my neurologist. Quote Link to comment Share on other sites More sharing options...
Ddikevin Posted September 9, 2019 Author Share Posted September 9, 2019 I wanted to follow up with everyone on my post on August 25. The week of the 25th we were away on vacation and the attacks gradually got a bit stronger. When we returned home I had another Emgality in the fridge as the pharmacy had given me two injectors when I refilled previously which is why I think the neurologist gave the pharmacy a migraine script so that I could get more. How and ever I had now taken 4 120mg injections in a little over 4 weeks which is about right for an episodic cluster patient. Regrettably the attacks have returned to their full intensity and after a few really bad nighttime attacks I have started the prednisone taper again which seems to be working. I think my next step is the alternative treatments. I did purchase the excellent book by Ashley Hattle and will use that as a reference. I suppose I will keep doing the Emgality as I can get it as I think it helps a little . I do have a request to the community. I need to find somewhere in Northern New Jersey area, Rutherford , Hackensack Nutley area to get an oxygen tank etc if anybody knows. Thanks Quote Link to comment Share on other sites More sharing options...
Freud Posted September 9, 2019 Share Posted September 9, 2019 Hey buddy PM me your info. I can spare an M tank or two, you got a regulator? I’m a bit south. In Central NJ but I can meet up on Thursday if that works for you. Brian Quote Link to comment Share on other sites More sharing options...
Freud Posted September 9, 2019 Share Posted September 9, 2019 As in contact info... Quote Link to comment Share on other sites More sharing options...
Freud Posted September 9, 2019 Share Posted September 9, 2019 And thanks for the emgality update. I’m seeing bostonheadachedoc tomorrow and we’re going to talk about emgality. I’m pretty sure you’re not on the right dose. It’s a double injection first dose and one injection every month there after. My former doc said it can take months to work so don’t give up yet. All this info is based on his edu of me as well as a little reading. But I’ve heard docs writing it all kinds of crazy ways. 3 injections the first month... I’ll get to the bottom of this tomorrow, I’m fairly certain BHD was one of the investigators/ sites but I could be completely wrong. He may have just had patients enrolled in the study... 2 Quote Link to comment Share on other sites More sharing options...
Freud Posted September 10, 2019 Share Posted September 10, 2019 On 8/25/2019 at 9:30 PM, Psiloscribe said: It sounds like you've been prescribed the migraine dose of Emgality. The cluster dose is 300 mg and comes in (3) 100mg injections. Have your doctor check out the eli lilly website for info on prescribing instructions for clusters. Now I’m really confused may be the 3 injections wasn’t crazy. I know I read 2 a while back and my doc said 2 then 1 every month after... we shall find out tomorrow. Quote Link to comment Share on other sites More sharing options...
Ddikevin Posted September 10, 2019 Author Share Posted September 10, 2019 Brian, thank you for the offer of help, if you check the emgality website it says for episodic its 3 100 mg's as the first dose and then 100mg monthly. I didn't think you had to wait months for it to work. best Kevin Quote Link to comment Share on other sites More sharing options...
Freud Posted September 12, 2019 Share Posted September 12, 2019 (edited) So folks apparently there is a lot of confusion about the dosage. From the horses mouth: Dr McGeeney said the correct and only dose for CH is 300mg a month every month. He said everything else is only for migraines! He said the correct info is on their site if you look in the right place. My previous doc wrote the wrong script as well and he was a major headache center guru! I never tried to fill it. I have started the process to get it... let y’all know when/ if I try it. I say if cause I’m pretty sure the D is starting to work! I’m not PF but it’s a hell of a lot better yesterday and today. Today was the last dose of my second load w target 25(OH)D3 of 140! Edited September 12, 2019 by Freud 1 Quote Link to comment Share on other sites More sharing options...
CHfather Posted September 12, 2019 Share Posted September 12, 2019 Thanks, Freud! I feel like there ought to be a simple pinned post in the CB Files section about proper Emgality dosage. Fingers and toes crossed here that the D regimen is doing some magic for you. Anything else to report about your appointment with McGeeney? 1 Quote Link to comment Share on other sites More sharing options...
Freud Posted September 12, 2019 Share Posted September 12, 2019 Um, He couldn’t state enough how he thinks the conference is going to be life changing for me and every CH patient especially CCH. Should attend at least once. He thought I have been dealing w CCH a longer than 2 years and said “Oh man, you’re still new at this.” He stayed several times he would like to spend time with me st the conference and talk more. He said he has several veterans he wants me to meet and would introduce me. He mentioned a few of you guys. He said although the emgality data wasn’t that good for CCH he does have a few patients that have responded. And not just w reduction of CCH. He said “home runs” like he hopes for me. He wants to get me back to work ASAP. He was very supportive of @Batch‘s work and told me to keep following his lead. Don’t wait keep busting. Don’t wait on emgality, start it now. It takes some time to get. Insurance rejects it, he appeals, they reject again, he contacts Lilly and gets me in some kind of free program. I don’t have to do a thing but wait my old doc didn’t know or do any of that. Just wrote the script (the wrong one I might add(I never tried to fill it)). He is concerned about me making it to Dallas on a plane. Offered me prednisone to start before I go. I told him they didn’t do a thing for me the first time I tried them and with a couple of board members having hips done recently I’d pass. My plan is to use the max amount of trex I can a day (4 zembrace) if needed and pay for it later... especially on the plane. But my friend who came with me told him “he’s tough as nails and wouldn’t have a problem. I would get there fine.” I drive during kip 8-10s. I try and not drive w 10s. But some times it happens. I keep a M tank in my cars. Some times it works some times it doesn’t. My first CH was a 3 hr kip 10 30 min into a 3.5 hr drive... it’s not for everyone and not too many people have had 25% burns... I just have to maintain some kind of life... I can’t operate/ work with one but I’m thinking about switching to the dark side for a while and doing something in industry... have to give this D more time to kick in but if all I have is some kip 4/5s and I can get a little more sleep than I have been I could do an industry job. Think thats basically it... i forgot to ask how long it might take to see results w emgality. Will find out in Dallas when we talk again. Unlike most docs he wants to leave my f/u appointment up in the air and corresponding with him him sending him updates would be more than sufficient for now. He can refill my ketamine electronically as well as the emgality when I get it... fyi to anyone getting ketamine nasal spray. Price varies a lot. I’ve been quoted $225 for the full script as well as 60$. It’s a slimey world out there. One place said “it would be cheaper for you to get it off the street!” I just hung up I will make a post about my early experience w the ketamine from strength of script, what you need to have your doctor order as well as how it helps me and all it entails... sorry to hijack this thread but I don’t want to make a post titled my appointment w dr... just seems strange to me 2 Quote Link to comment Share on other sites More sharing options...
Freud Posted September 13, 2019 Share Posted September 13, 2019 Thank you BOF Quote Link to comment Share on other sites More sharing options...
Joshua Posted September 13, 2019 Share Posted September 13, 2019 Hello everyone, I thought I'd throw my .02 cents in re: Emgality. I've been episodic since I've been 18 years old, I'm 45 now. The episodic cluster dose as noted above is 3 injections monthly until cycle ends. Yesterday I took my second round of 3. My cycle started mid summer in earnest and I was up to 5 cluster headaches a day. Verapamil and the usual prevents prevents weren't working, and although my D3 level was normal, the regimen wasn't helping this time around (it had in the past). So I started Emgality on 8/15 and my 5 a day went down to about 2 a day, then skipped days, and as of today I've been about 7 days PF. So, Emgality YAY! - or maybe not? The question I"m asking myself is whether this is due to the drug or the seasonal change towards Autumn. The PF days started just as the weather started to get cool where I am. Either way, I'm happy to not be getting any more attacks, and I took another monthly dose yesterday just for insurance. If I remain PF, I may see what happens mid-October and see if I get get off meds. This site and CH.com have been lifesavers for me in some pretty dark times, thanks to everyone who posts here. Joshua 3 Quote Link to comment Share on other sites More sharing options...
LennyC Posted October 18, 2019 Share Posted October 18, 2019 I've been on the Amgen version, Aimovig, since August of 2018, I had previously done 2 rounds of dexamethasone in the summer of 2018, finally busted my episode with a few rounds of MM - so I technically started the Aimovig while not in episode. One 70mg injection per month. I've been headache free for well over a year. I'll turn 60 this month, had been dealing with the beast for about 25 years. I also think I might be aging out, so that might have something to do with it. Personally, I think the cgrp inhibitors are better as a preventative, possibly not strong enough to break a full-on episode. Also, if one doesn't work, try another maker - there may be slight differences between the brands. Best wishes. Quote Link to comment Share on other sites More sharing options...
swiftlaw Posted October 20, 2019 Share Posted October 20, 2019 Brain on Fire: Can you point to the debunking of the Aging Out theory. I just turned 70 been here for 30 years. Quote Link to comment Share on other sites More sharing options...
swiftlaw Posted October 20, 2019 Share Posted October 20, 2019 Well Brian, I'm not going to go looking for those posts I'm going to ignore them. I refuse to believe it. Aging out is one of the great hopes and I won't allow you to destroy my vanity with the truth!! 4 Quote Link to comment Share on other sites More sharing options...
LennyC Posted October 21, 2019 Share Posted October 21, 2019 Aging out or not, it's possible that one branded cgrp agent may work better than another for a specific patient - so if Emgality didnt work, try Aimovig Quote Link to comment Share on other sites More sharing options...
Joshua Posted October 21, 2019 Share Posted October 21, 2019 I had great success with Emgality. Took it in mid-August when I was having 5 HA's a day. They slowly decreased and last HA was 9/4. Quote Link to comment Share on other sites More sharing options...
Joshua Posted October 22, 2019 Share Posted October 22, 2019 It's working. No headaches since 9/4. 2 Quote Link to comment Share on other sites More sharing options...
Jandrews Posted October 24, 2019 Share Posted October 24, 2019 Hey man. Im getting ready to try emgality. I am episodic. Cycle started in the fall. I hope you are still doing well. And like you, if it does end. Ill probably wonder if it was just the end of the cycle. Ill keep posting. But thanks for posting. Sometimes people hunt through old post for info. 1 Quote Link to comment Share on other sites More sharing options...
Jlands Posted November 14, 2019 Share Posted November 14, 2019 I am episodic and started a new cycle about 5 weeks ago. Was prescribed the prednisone taper (which always works for me) and Emgality at 3 100mg injections per month as stated above. After i finished the prednisone (about 3 weeks ago) it was time to see if Emgality was working. I've had maybe 1-2 clusters that I would rank as above a 5/10 and a few days of just getting the feeling of a headache coming but never materializing. The rest has been PF. For reference, during a cycle i typically get 1 per day. I'm pretty optimistic that the Emgality is helping. 1 Quote Link to comment Share on other sites More sharing options...
fireface Posted January 14, 2020 Share Posted January 14, 2020 I’m an Emgality fail. Started cycle in October. Got in right away for the two free 120 mg Emgality, Depakote, Prednisone burst and o2. HA’s stopped within a week. I’ve had that happen before with prednisone. At this point I’m still on the fence as to Emgality. Next month I pay $600 for the 3-100mg. shots. Still no HA’s. I’m optimistic. 3 weeks later HA’s are back with a vengeance. A week later I pay $600 for another round of Emgality and it did nothing. HA’s continued to get worse.. up to 8 a day/night. Sleep is a big trigger for me. Even O2 had a hard time aborting the attacks. The only good news is, after a month of pure terror, I should start winding down this cycle. I want my freakin’ $1200 back because Emgality didn’t do shit. It was the Prednisone that gave me the initial relief and O2 got me through the peak period. Bummer. I had high hopes for that stuff. Another failed treatment. Quote Link to comment Share on other sites More sharing options...
MaxHead Posted January 30, 2020 Share Posted January 30, 2020 I began Emgality (300mg) in September with great hope. Unfortunately, it has not seemed to help in my case. However, in retrospect, I probably have been chronic CH during this time. I have discontinued use Quote Link to comment Share on other sites More sharing options...
swiftlaw Posted February 8, 2022 Share Posted February 8, 2022 On 1/14/2020 at 2:25 AM, fireface said: I’m an Emgality fail. Started cycle in October. Got in right away for the two free 120 mg Emgality, Depakote, Prednisone burst and o2. HA’s stopped within a week. I’ve had that happen before with prednisone. At this point I’m still on the fence as to Emgality. Next month I pay $600 for the 3-100mg. shots. Still no HA’s. I’m optimistic. 3 weeks later HA’s are back with a vengeance. A week later I pay $600 for another round of Emgality and it did nothing. HA’s continued to get worse.. up to 8 a day/night. Sleep is a big trigger for me. Even O2 had a hard time aborting the attacks. The only good news is, after a month of pure terror, I should start winding down this cycle. I want my freakin’ $1200 back because Emgality didn’t do shit. It was the Prednisone that gave me the initial relief and O2 got me through the peak period. Bummer. I had high hopes for that stuff. Another failed treatment. Fireface: Any updates on your Emgality? Quote Link to comment Share on other sites More sharing options...
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