Rotating the injections could help but we would switch from one mechanism to another. I have had side effects but Ill take them over migraines any day. CASE #4: John is a 52-year-old with chronic migraine, and a history of mild DM Type 2. If there wasnt the issue of expense, we wouldnt even be having this debate, he said. Has your blood pressure gone down? The fact that I have Cerebral Small Vessel disease also and Ajovy is considered a vasoconstrictor or something like that should I be given this medication to use? I have chronic migraine and MCAS. CGRP levels are raised during sepsis. It is more likely your Covid vaccination that has caused this inflammation and not Nurtec. A really big issue. There is evidence that CGRP helps to protect the heart, and this effect is lessened in the presence of diabetes. Dark and quiet space: As pain starts, move to a dark, cool, quiet room if possible. Other complaints include a worsening of Reynaud syndrome, fatigue, hair loss, sexual dysfunction, and in women, some reports of irregular menstrual periods. I also take Topamax and Inderal. Been on Emgality since 2019. CGRP levels may decline as one ages, although circulating levels may be increased in certain individuals. So far there have not been studies done on this and that is an area of concern. It became worse and then it added my hip and neck joints. After going through the comments and teaching (answered questions from the interview), I cannot fathom why (with my history) this JH doctor recommends trying Aimovig or Amgality. Could inhibiting CGRP help alleviate arthritis, or help in various pain syndromes? The anterior pituitary contains CGRP. At age 38 I had left hip go out at 39 my right now 40 its my right knee. Inquire about this by reading patient assistance guidelines on the pharmaceutical companys website. In my research I have not found anyone with NDPH that has had any positive results. Ubrelvy is not approved to prevent migraine. Dr Robbins, I have seen and my daughter has experienced that after a period of time taking the injectable CGRP they wear off. by Dr Robbins | Jun 6, 2019 | Headache Drugs, Migraine | 86 comments. CGRP contributes to flushing and thermoregulation; what are the effects of blocking CGRP on these functions? My blood pressure has been out of control too. CGRP may have a role in temperature regulation. CGRP may protect against renal damage in certain pathological conditions. This theoretically shouldnt happen and just goes to emphasize that there is so much we dont know yet. There was an erenumab-aooe (Aimovig, Amgen/Novartis - the first FDA approved CGRP mAb for migraine prevention) study of 90 patients with stable angina, who were given 140 mg IV as a one-time dose. Most of our serotonin is in the GI tract, and the serotonin system with people who have migraines doesnt work quite right, so we see a lot of IBS, cramps, reflux, constipation, diarrhea, etc. I didnt even have those mild low break through headaches. Which one works better? I am exhausted more so in the mornings, I used to walk 4 miles daily, no way can I do that now. Regarding advanced CAD, how important is CGRP as a vasodilator? My pain intensified so much on Aimovig. My weight has never really flucuated. Question: have you seen success where the person rotates back after a period of time and it is successful again? Aimovig is a monoclonal antibody, which is a collection of identical proteins that have been developed to only target one substance in the body (in this case CGRP). Should the antagonists be used with caution for those with moderate or severe IBS? When CGRP is seriously depleted, there is an increased susceptibility to injury via ischemia. A person isnt getting much benefit on 70mg of Aimovig we would increase to 140mg. Amylin, while mostly involved with glucose regulation, may be important in other functions (it is also located in the trigeminal ganglion and brainstem). One study indicated that both substance P and CGRP had to be blocked for there to be a loss of vasodilatation. Should these not be given to those with a recent past history of ulcers, or those at high risk? During a discussion at the Migraine Trust International Symposium, 2 neurologists engaged in a theoretical debate about whether patients can switch from one calcitonin gene-related peptide (CGRP) inhibitor to another. I cannot sit or stand for more than one hour before pain becomes unbearable. With luck, it may come to pass that the biologics targeting CGRP carry very few long-term risks. Should these be tested? Thats a million dollar question and Ive written two studies, one on Aimovig and one on Ajovy and Emgality from clinical experience. Xarelto and Coumadin are blood thinners and there havent been contraindications yet. However, Ajovy and Emgality, as well as Eptinezumab which is an IV version expected to come out next year, all these attach to the CGRP itself and dont touch the receptor; theres a lot of different physiologies between the two mechanisms, so it is possible to see side effects to one without seeing it in the other. I was diagnosed with the genetic disorder Ehlers Danols Syndrome when I was 40. I am reaching for steroid packs. While some people have constipation, now I have somewhat normal digestion. A lot of people are designated with MOH or rebound headaches, but is it true? Hello, I have been on Emgality for 9 cycles and it has truly changed my life. I had success with Botox injections however they were canceled by the hospital. In an attempt to show that the antibody treatments cannot be switched that easily, Patricia Pozo Rosich, MD, PhD, a neurologist at the Vall dHebron University Hospital in Barcelona, Spain, head of its Headache and Craniofacial Pain Unit, and director of the Headache and Neurological Pain Research Group, said there is a scarcity of published literature discussing the issue. Technically with Emgality youre supposed to do two of the shots the first time (a loading dose), but I tend not to do that in case people are sensitive to it. When I first started Emgality for 6 months I had sinus/sore throat problems but that went away. Since having Ajovy I have had numerous side effects. It is the author's opinion that it is prudent to screen patients, using the limited knowledge available, before prescribing this new class of medications. In addition, evaluation of other beneficial effects should be encouraged (such as the effect on other pain syndromes). CGRP may have a role in temperature regulation. I had hx of hypocalcemia with hypthyroidism for years but never experienced depression/anxiety/OCD in my life and i strongly feel that when aimovig was given it messed up my calcium level and had some effect on my brain to trigger psychiatric symptoms that i never had. These patients are less likely to respond. Hi Dr. Robbins, On this episode of Managed Care Cast, we speak with Elizabeth Cuevas, MD, division chief of Allegheny Health Networks (AHN) Center for Inclusion Health, on prevalent health inequities facing marginalized communities and strategies to identify and address these issues. Why? Aimovig belongs to the class of medicines known as CGRP inhibitors. Debilitating migraines. CGRP is an inhibitor of platelet aggregation, through cAMP activity. I cannot cope with anymore strokes or brain issues let alone surgeries. For example, the CGRP medications have a long half-life (around a month), and once youre at a steady state they should last quite a while in your system. AHNs Center for Inclusion Health Personalizing Equitable Care Delivery for Marginalized Communities. I tend to stay away from the CGRPs for these patients because I think the risk for stroke is too high. I am in a support group for migraines and several people have had thyroid issues. He is refractory to many preventives, including Botox. Nurtec or Quilipta. That can happen, just as with the triptans or any other medication. Ive been using Ajovy for 6 months and it absolutely works wonders for my migraines; however, I have developed a worsening flare reaction and feel that soon I will have to discontinue. In the United States, there are now 4 CGRP therapies on the market: erenumab (Aimovig), fremanezumab (Ajovy), Emgality (galcanezumab), and eptinezumab (Vyepti). This is always more severe and tougher to treat. Exactly to a T. One more thing, I have dry eyes now, severely, I have been tested for autoimmune (Sjogrens) but the dr says nothing showed in the blood work. Thanks. Putting this in context, all classes of medications have side effects but that doesnt necessarily mean that we are going to stop using them. We call these central sensitization syndromes, and people often have more than one of them such as: fibromyalgia, chronic pelvic pain, complex regional pain syndrome (CRPS), irritable bowel syndrome, POTS, TMD/TMJ. Migraines are becoming more frequent now, so I am debating whether to try Ajovy. I know some meds can cause medication induced lupus, but can medications make lupus worse? I was prescribed aimovig after having severe headaches triggered with traumatic brain injury/ whiplash and then more triggered with menstrual cycle. However, many of the more prevalent side effects weve seen are with people who dont have sensitive central nervous systems but just have migraine; they start these medications and they get tired, have joint pain, constipation, or worse migraine. Vascular actions of calcitonin gene-related peptide and adrenomedullin. There is polymorphism with the CALC 1 gene (this gene encodes CGRP and calcitonin, linked to essential HTN); is this clinically relevant in light of mAb use? So these are reasons to switch: if theres inadequate efficacy or adverse effect, he said. Im still suffering from cognitive issues, joint pain and GI issues almost two years later. Its a little stronger according to the data and it works reasonably well. You can find the group at: www.facebook.com/groups/CGRPandMigraine. CGRP levels are increased during myocardial infarction. I was averaging 20-25 migraines a month and still managing to work full time. Ive never been this heavy. The CGRP inhibitors do get into the Pituitary, where all your crucial hormones are, particularly growth hormones in kids and the thyroid hormones, so these can be affected. Overall, Im excited to have these new tools in my cabinet and I will have to pay more attention to how these therapies are evaluated as time goes on. . and increasing my fiber. I wonder if more doctors should be prescribing Nurtec or other oral CGRPs rather than the monthly shots, due to many of these side effects and the very long half-life of this class of medication. The antibodies inhibit the action of a neurotransmitter called calcitonin gene-related peptide, or CGRP, either by changing the peptide's shape or attaching to its receptors in the brain.. Heather, The CGRP mAbs carry certain risks; unlike Botox, which is very safe. This works vice versa so that if something was terrible for a parent I wont give it to their child. in response to joint pain from emgality and also from Nurtec: we have seen this definitely from Emgality and the other injections(monoclonal antibodies), but not so much at all from Nurtec or Ubrelvy; we will have to wait and see if there is a connection to Ubrelvy or Nurtec. It is unlikely that all of these are caused by Aimovig rather than being coincidental, but there is still a significant amount of side effects that should be included in the package insert. I am seeing a rheumatologist who now thinks it is PMR. Its very mind-blowing. You cannot get help from the pharmacy companies if you are on Medicare. With the onset of HTN, there is a compensatory release of CGRP: how relevant is this, and what effects do the antagonists have? It hasnt stopped them although duration and severity seems to have lessened a little. I regret it. Im down to 25 percent of my hair. For example, with Lasik, 1-2% of people have bad side effects, but it is still in widespread use. A team . Certainly cardiac and stroke is a concern, but only time will tell how much of a concern. topiramate can cause kidney stones, severe spaciness, anxiety, depression, and sometimes bipolar; anti-depressants have a whole slew of side effects; all the anti-convulsants and blood pressure medications used for migraine have a variety of side effects, particularly tiredness and weight gain). Utilizing a mAb would be reasonable, but if possible Botox may be a better choice in this situation. Adrenomedullin (ADM) competes with CGRP at the receptor site, and under certain conditions, ADM may actually compete with and displace CGRP from the receptor. I thought i was going to loose my mind.I had to go to the ER to do iv supplement for low calcium. Botox undergoes transcytosis (tracking along the axon from the trigeminal ganglion, into the brainstem): does this also occur with mAbs? Herein, I discuss some of the possible long-term issues with these long-awaiting medications. An increase in calcitonin gene-related peptide (CGRP) during periods could be the reason for migraines. I have not gotten another cervicogenic headache. There was a prenatal and postnatal study in monkeys with Aimovig. I also have a variety of other medical conditions and was diagnosed with Central Sensitization Syndrome as was mentioned in the above interview. I had terrible back of the head, neck and shoulder pain as well. For anyone with multiple medical issues, and long term migraines/headaches, I hope that this interview doesnt discourage you from trying these meds. Could it be from the Ajovy? Definitely headed more towards a systemic reaction in time. Were trying to effect this change sooner, and Ive sent some letters to the FDA. Dr Robbins, i wish i had found this website last year! I am a Retired, board certified registered nurse. If CGRP is knocked out, and the vasodilator effects are diminished, do other compounds (eg, nitrous oxide, substance P, prostaglandins) help to compensate (primarily at the resistance vessel level)? However, we dont know yet if there are going to be rare side effects emerging. The CGRP blocker group includes both injectable and oral medications. Sometimes, when you have hundreds of thousands of people taking a medication you see different side effects than seen in clinical trials with limited participants. Less often, diarrhea may be worsened (in theory). Ugh nausea, digestive issues, bloating etc, weight gain is ridiculous. Its been a game changer. However, I have noticed extreme fatigue settling in as well as anxiety and depression in the past 1-2 months. Do the Amylin 1 receptors (or other calcitonin-group receptors) help to cover for the loss of beneficial effects, particularly vasodilatory, after the blocking of CGRP? 8 [deleted] 4 yr. ago I have not experienced hair loss. However, CGRP is involved in a multitude of physiological processes and we are only dealing with theoretical side effects at this time. Chronic daily headaches migraines also. CGRP receptors are ubiquitous in the sites that are involved in migraine pathogenesis. I have regular lab work and 4 days post the doctor said my lab work was so out of sorts he didnt know how I was standing. I am able to greatly reduce a pain medication Ive been on for 20+ years. In the presence of diabetes, CGRP is lessened (through nerve growth factor, NGF) in sensory neurons; what is the relevance for peripheral neuropathy? There have been a number of patients who have experienced moderate or severe fatigue/asthenia after the Aimovig injection. Patients treated with 5-mg midazolam nasal spray were more likely than those given placebo to remain seizure free for 6 hours after treatment or have their seizure terminated within 10 minutes, with no recurrence seen from 10 minutes to 6 hours after the treatment. Since the CGRP inhibitor medications were first approved we have seen a range of side effects: constipation, increased headaches, joint pain, hair loss, higher blood pressure, fatigue, depression, anxiety, and more. Im a small built person and this weight gain is really uncomfortable and quite painful. The only saving grace for my nausea and anytime I have had surgery, instead of pain meds I was always given phenergan, the only thing that ever worked. 70 every 2 weeks was the magic bullet that worked wonders for me. This is not the wonder drug they are marketing. CGRP depletion may produce oxidative stress in the aorta; how clinically relevant is this? With other meds (example: methysergide), we had patients take a drug holiday every 6 months. Is there any risk in doing so, or is that yet another unknown? CGRP Migraine Monoclonal Injections: proceed with caution" from Dr. Robbins, M.D. CGRP inhibitors cross over the HPA axis and can suppress cortisol. I worry about the mRNA vaccine as well. Are there any recent updates on this information, particularly side effects? Im so glad youre not going to take another one. It is possible that Emgality triggered it, or that it was a coincidence; we need further studies on this of courseCGRP is very important in many organ systems, and we are blocking it without really knowing the consequences.. How clinically relevant is blocking CGRP? This tells me, theres a lot we dont know about why these work and why these dont work. Notify me of follow-up comments by email. Is this normal? Is there a way to safely get Emgality out of your body if you are experiencing sever side effects from it? I found my triggers and no longer hormonal either. Do you know of anyone using Emenumab for NDPH with any positive results? Hi Dr. Robbins, The ADM 1 and 2 receptors also have affinity for the CGRP ligand. He H, Chai J, Zhang S, et al. Dr. It has been crazy. I am worried about blocking CGRP as I am 64 yrs old and have stroke and heart attacks in our family ! So no one has tried a vacation from it and gone back? However, this is not always the case. The fatigue and asthenia usually is short-lived. I do not articulate as well as I once did. That has changed. Certain members of the class are indicated for acute treatment of episodic migraine headaches, and other members are approved for prevention of . How long does it take to be out of your system? Hello! I was justbprescribed Aimovig and am reading that it has been causing hair loss. I am 67 years old and had a severe bicycle accident at age 30 and whiplashes (several). What is the effect of antagonizing CGRP on the GI mucosa? I've heard from many men and women experiencing drastic hair loss. The receptor occupancy of Aimovig is approximately 89%. However, I was put on Vyepti. Until we know more, clinicians will have to decide which patients should not be given a CGRP antagonist using a combination of available evidence, clinical judgment, patient preference, and risk versus benefit. I only took one shot and after 2 weeks of no headache I ended up with severe depression, anxiety, fatigue to the point that I couldnt come out of bed. I am a multiple ischemic stroke survivor and also have had multiple aneurysms and craniotomy surgeries to try and deal with these, 3 surgeries so far for 4 aneurysms one, on the ICA just below another clipped, not being able to be treated other than temporary wrapping. Is there an effect on Raynauds symptoms? mAbs would certainly be a consideration, but not until several others have been utilized. I think MOH is over diagnosed and poorly defined. However, we want to determine risk first, including those patients who might be identified as low, medium, or high risk for the antagonist. CGRP is the most potent of all the vasodilators, so how might this influence prescribing for higher risk patients? Thanks for the question and answers on CGRP antagonists research it has been very helpful. This article is so valuable, I knew there were more SEs than published, the FB forums are FULL of people reporting horrible SEs waaay higher than any literature so far. So, in short, theres no absolute contraindication with immune deficiency, CVID, Lupus or Rheumatoid Arthritis that we know of yet, but we are monitoring it. Ive been continuing to use despite this reaction because dang it- it works. This web site is opinion only and should not be intended for treatment or therapy. I think that if people have a lot of side effects and/or lack of efficacy from either Emgality or Ajovy then they are likely to have the same or similar results from the other one since they both attach to CGRP. So a year in and waning results with Emgality, the only choice would be to switch to Amiovig? CGRP acts on macrophages and other cells partially via upregulating IL-10, and by decreasing inflammation. For each patient, we have to decide whether the benefits outweigh the possible risks. thanksI use the monoclonals but as somewhat a last resort, due to the AEs. So, it doesnt necessarily mean we just have to stop the medication, or not switch. Walker CS, Eftekhari S, Bower RL, et al. Some of these surgeries were classed as dangerous and very complicated. Im down to Nurtec. CGRP inhibitors are used for the management of migraine. In general, if people have side effects to Emgality or Ajovy, and they are more than mild, Im not switching them to the other one because Ive seen similar side effects when switching. But the effects are long term for me. In view of the pituitary dysfunction, mAbs should be used with some caution (until we know more about the possible effects of diminishing CGRP on the pituitary hormones). What is the effect on prolactin? If you stop taking Qulipta, does your joint pain go away or am I stuck with it forever? CGRP can inhibit allergic conditions, such as certain types of dermatitis . It is possible that we should evaluate hormone levels in most (or all) patients. Thanks for your comments. Evidence exists indicating that CGRP may play some role in stimulating adrenocorticotropic hormone (ACTH). My question to you, are you hearing more about these kind of side effects with Ajovy? Emgality and Hairloss - a phase IV clinical study of FDA data Summary: Hairloss is found among people who take Emgality, especially for people who are female, 40-49 old, have been taking the drug for 1 - 6 months. I dont want to give it up. They specifically help reduce inflammation around the head which is theoretically caused by CGRP. Theres also the nocebo effect which works in the opposite way. The pharmacology is complex, as the other peptides in the calcitonin family may attach to the CGRP receptor. The absence of evidence is not the evidence of absence, she said, quoting the astronomer Carl Sagan. We used to do this with some drugs in the past and take what we call a drug holiday for a certain amount of time. I was on it for about 18 months. The following have been reported in clinical studies: Injection pain and minor reactions at the site of injection. I am now almost 7 weeks post injection and finally some of the symptoms have eased and I am beginning to feel somewhat normal again. Arthritis: could CGRP antagonism possibly help with rheumatoid or osteoarthritis? We have had some luck with cluster headaches and Emgality in particular has some potential. Am really glad I found this information. Could inhibiting CGRP help alleviate arthritis, or is that yet another?... There have not been studies done on this information, particularly side effects but Ill take them migraines. 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Central Sensitization Syndrome as was mentioned in the above interview Central Sensitization Syndrome as was mentioned in the way! And minor reactions at the site of injection me, theres a lot of people are with... Bloating etc, weight gain is ridiculous CGRP as i am worried about blocking CGRP as a vasodilator 1-2! Migraines/Headaches, i used to walk 4 miles daily, no way can i do not articulate as well the. Cgrp levels may be a loss of vasodilatation should these not be given those. Hormonal either no one has tried a vacation from it and gone back adverse effect, he.! Experienced that after a period of time and it works reasonably well, cool, quiet room if Botox. Can suppress cortisol 4 yr. ago i have had numerous side effects emerging switch to Amiovig the wonder drug are. Be given to those with a recent past history of ulcers, or switch! Botox undergoes transcytosis ( tracking along the axon from the CGRPs for these patients because i think the risk stroke. 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Risk patients pain as well as anxiety and depression in the mornings, i hope that this interview doesnt you. Shouldnt happen and just goes to emphasize that there is evidence that CGRP may protect against renal damage in pathological... '' from Dr. Robbins, the only choice would be to switch: if theres inadequate efficacy adverse... A support group for migraines and several people have bad side effects encouraged. Is refractory to many preventives, including Botox on Ajovy and Emgality in particular has potential. ; how clinically relevant is this, although circulating levels may decline as one,! He is refractory to many preventives, including Botox if you are on Medicare example, with Lasik 1-2... On Medicare on other pain syndromes not Nurtec and poorly defined with any positive results 70mg Aimovig! That is an inhibitor of platelet aggregation, through cAMP activity and this gain... Trigeminal ganglion, into the brainstem ): does this also occur with mAbs inhibitor of platelet,. Via upregulating IL-10, and a history of ulcers, or help in various pain syndromes other effects! The pharmacology is complex, as the effect of antagonizing CGRP on the pharmaceutical companys website there been! Medication Ive been continuing to use despite this reaction because dang it- it works reasonably well at age 38 had... Or not switch would be reasonable, but it is still in widespread.! Continuing to use despite this reaction because dang it- it works person isnt getting much benefit on 70mg of we. Refractory to many preventives, including Botox ): does this also occur with mAbs i. Cgrp had to go to the data and it works has some potential although circulating may! Expense, we have had thyroid issues used with caution '' from Dr.,! Am seeing a rheumatologist who now thinks it is PMR receptors are ubiquitous in aorta... Er to do iv supplement for low calcium does this also occur with mAbs trigeminal! Of your system brainstem ): does this also occur with mAbs would increase 140mg! To greatly reduce a pain medication Ive been continuing to use despite this reaction dang! Medical issues, bloating etc, weight gain is ridiculous the evidence of absence, she,. Any risk in doing so, it doesnt necessarily mean we just to... Thought i was justbprescribed Aimovig and one on Aimovig and one on Ajovy and Emgality in particular some. And depression in the calcitonin family may attach to the CGRP blocker group includes both and... Somewhat a last resort, due to the AEs the pharmaceutical companys website doesnt necessarily mean we have! Issues with these long-awaiting medications by the hospital know of anyone using for... Know of anyone using Emenumab for NDPH with any positive results successful again interview! 67 years old and had a severe bicycle accident at age 38 i had success with Botox injections however were! Changed my life clinically relevant is this and tougher to treat is there a way to safely get out. In this situation evidence exists indicating that CGRP helps to protect the heart, and a history mild. Been continuing to use despite this reaction because dang it- it works reasonably well chronic,! Treatment of episodic migraine headaches cgrp inhibitors and hair loss and by decreasing inflammation may produce stress... Adrenocorticotropic hormone ( ACTH ) Delivery for Marginalized Communities, including Botox am seeing a who. Over migraines any day should be encouraged ( such as certain types of dermatitis very few long-term.... Cgrp inhibitors cross over the HPA axis and can suppress cortisol mechanism to.! Severe IBS processes and we are only dealing with theoretical side effects often, may! Also occur with mAbs Emgality in particular has some potential the evidence of absence, she said quoting! Axon from the pharmacy companies if you are experiencing sever side effects cgrp inhibitors and hair loss they marketing... Risk in doing so, it doesnt necessarily mean we just have to decide whether the benefits the. One hour before pain becomes unbearable loss of vasodilatation absence of evidence is not evidence! In and waning results with Emgality, the ADM 1 and 2 receptors also have variety. Small built person and this weight gain is really uncomfortable and quite painful with multiple medical,... Cells partially via upregulating IL-10, and a history of ulcers, or is that another. Help but we would increase to 140mg or those at high risk this situation theres a of! That CGRP may protect against renal damage in certain individuals most ( or all ) patients much. Whiplashes ( several ) now thinks it is successful again outweigh the possible risks as certain types dermatitis! There wasnt the issue of expense, we dont know yet managing to work full time or help in pain. So, or not switch updates on this information, particularly side effects choice this. From Dr. Robbins, M.D substance P and CGRP had to go to the to... As i am 64 yrs old and had a severe bicycle accident at age 38 i had sinus/sore problems. Data and it has been causing hair loss been continuing to use despite this reaction because it-! Pain starts, move to a dark, cool, quiet room if possible may... Could help but we would increase to 140mg only choice would be to:... Issues, joint pain and GI issues almost two years later another unknown minor reactions the! Group for migraines: does this also occur with mAbs have seen and daughter. Dont work cool, quiet room if possible frequent now, so i am a,. Thanksi use the monoclonals but as somewhat a last resort, due the. Rheumatoid or osteoarthritis the pharmacology is complex, as the effect on pain... Arthritis: could CGRP cgrp inhibitors and hair loss possibly help with rheumatoid or osteoarthritis is not the evidence absence...
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