I didnt relate it right away to the Nurtec. Most people have mild side effects to the CGRP medications, if they have any side effects at all. Is this combo safe since they are both gepants? It is approved at two dose strengths (50 milligrams [mg] and 100 mg) for migraine with and without aura in adults only. As I am on Eliquis for treatment of my A-Fib. It was Heaven at first; migraines since a child after TBI. Theres a great deal of life I either missed out on or failed to find joy in. I havent even filled my Imitrex in months. Some patients have also experienced stroke-like symptoms as well. It would be great to attack the root of the problem. The absence of evidence is not the evidence of absence, she said, quoting the astronomer Carl Sagan. However, we dont know yet if there are going to be rare side effects emerging. Nearly zero migraine. Other complaints include a worsening of Reynaud syndrome, fatigue, hair loss, sexual dysfunction, and in women, some reports of irregular menstrual periods. Her recent fracture of a bone plays a role in our decision, as CGRP is involved in bone healing. CGRP 1 is primarily CLR and RAMP1. Dr Robbins, I have seen and my daughter has experienced that after a period of time taking the injectable CGRP they wear off. Botox undergoes transcytosis (tracking along the axon from the trigeminal ganglion, into the brainstem): does this also occur with mAbs? I have all Our doctors dont know what to do as they, as you say, they look at medicine insert and it only states nausea as side effect. Anyway, I saw mast cell activation has been reported. Im down to Nurtec. I was referred to see if a Release Surgery would be prudent for me as nothing has worked for Bilateral-Occipital Neuralgia. CGRP inhibitors . (Im 55 yrs). Switching to galcanezumab led to a total elimination of his migraines; however, he developed persistent generalized uticaria for 3 weeks straight. Sometimes if you give 300,000 people a medication you will see a number of odd side effects that dont show up in studies with only a few thousand people. Each time the joint pain was worse. Medication Overuse Headache: Inaccurate and Over-diagnosed, Migraine Treatment; Whats Old, Whats New. I have been given Ajovy to use each month for the past 4 months. Quality of life issues also play a role. 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. CGRP levels are increased during myocardial infarction. We desperately need price controls on drugs in the U.S. Switched to Ajovy 18 months ago and life has never been better. In several years, we will have more information, regarding long-term safety and physiological effects of the CGRP antagonists. Sometimes this goes away during medication use, but not always. Exactly to a T. CGRP works on the neuro-immune system and is an immune blocker, dampening down the immune response. Hair loss is one side effect. The joint pain started prior to the vaccine so wasnt the vaccine. Heather has not tried Botox. It wont be long till we have 700,000 to a million people on these medications, and we may see even more odd side effects emerge. I was put on Aimovig (140) and Nurtec in January and I am having life changing results. This web site is opinion only and should not be intended for treatment or therapy. I dont really know how to put to words how amazing this has been for me. Other complaints include a worsening of Reynaud syndrome, fatigue, hair loss, sexual dysfunction, and in women, some reports of irregular menstrual periods. 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 have this exact same thing! CGRP may delay or protect against the development of cardiovascular disease. So far so good, knock on wood. I cannot cope with anymore strokes or brain issues let alone surgeries. Do the mAbs affect sperm in any fashion? Should antagonists be restricted for those with ulcers? In addition, some patients have had muscle and/or joint pains. Greetings, I am fortunate to read this before going on any of the above. Comparing CGRP blockers is the next big challenge for Migraine patients. A lot of people are designated with MOH or rebound headaches, but is it true? CGRP knockout may affect metabolism, energy use, and body weight. CGRP may have a role in temperature regulation. So a year in and waning results with Emgality, the only choice would be to switch to Amiovig? Do these occupancy levels steadily decline over the weeks/months, or is there a precipitous fall off at some point? And let me tell u i am myself a physician /psychiatrist and never knew I could have these symptoms when given a headache medication. Aimovig belongs to the class of medicines known as CGRP inhibitors. CGRP may cause . Sally has failed 4 preventives, including Botox. Patient age spanned 15 to 82 years old, he said, and most had health insurance. 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. Either it is still in my body, or the effects are permanent. 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. L.ROBBINS MD. Learn how your comment data is processed. . CGRP can inhibit allergic conditions, such as certain types of dermatitis . The good news with CGRPs is that there are no real drug interactions with all our oral drugs such as Inderal, Amitriptyline, and the Triptans. . The immune system and migraine go way back. Just last week I found a subreddit about Emgality side effects. CGRP itself is sort of a complicated large molecule made up of three or so components. I thought i was going to loose my mind.I had to go to the ER to do iv supplement for low calcium. The pharmaceutical companies dont really care if you die, because if you cant afford it, you have no value to them at all. With migraine, we get a lot of inflammation around the head with a release of inflammatory proteins that feed to the bottom of the brain then go up into the brain stem and the brain itself. But as soon as I try to wean off prednisone it returns. 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 have daily headaches that last most of the day with migraines popping in approx 15 days a month. If one blocks the CGRP receptor, versus the ligand, is there a clinically relevant difference? Its been a life-changer for migraines. He has not tried Botox. Thats a million dollar question and Ive written two studies, one on Aimovig and one on Ajovy and Emgality from clinical experience. I still havent gotten a migraine (or even a headache). Upsides I am still 23 lbs over weight (better than 50). Which receptor does CGRP engage with to facilitate wound healing? Good luck! Im super hydrating to help flush it and hoping the handfulls of hair in the shower stop. Is there any risk in doing so, or is that yet another unknown? My hair has and is falling out like crazy. There have been a number of patients who have experienced moderate or severe fatigue/asthenia after the Aimovig injection. They do penetrate the blood brain barrier and so may have more side effects; however, they also have much shorter half-lives. Get a weekly digest of our posts straight to your inbox! What effects may occur from lowering CGRP, with regards to these other receptors? I grew up with severe nausea with dizziness that was always hmm, maybe the flu my neuro thinks it could have been migraine. Regarding microvascular growth, CGRP is an angiogenic facilitator. The novel class of monoclonal antibodies (mAbs) targeting calcitonin gene-related peptide (CGRP) are a valuable addition to our preventives for migraine. I have not seen success in this area. The ADM 1 and 2 receptors also have affinity for the CGRP ligand. I started Ajovy two months ago and havent had a single migraine since. "What Can Cause Stomach Pain and a Headache?" Only about 45% of people find a preventative that works long term and which they can tolerate. How can this be evaluated? It becomes a risk versus benefit question for each person. Im on prednisone and I pop a Benadryl. How does antagonizing CGRP affect the person undergoing dialysis? These are useful drugs, but due to the side effect profile I think they should probably be reserved mostly if people have failed 5 other approaches, including Botox (Botox is equally effective but with few adverse effects).L.Robbins, M.D. Hello, I have been on Emgality for 9 cycles and it has truly changed my life. 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. I have had migraines since I was 6. What Were Reading: Rare Disease Drug Approved; Congress and PBMs; FDA Panel Splits on RSV Shot. I just had double hip replacement surgery and the surgeon said it was not from osteoarthritis but PMR and synovitis. The same is likely to be true for cervicogenic caused headaches and occipital neuralgia. It is more likely your Covid vaccination that has caused this inflammation and not Nurtec. Hopefully, over time, the community will be able to determine which of our patients may be at increased risk for long-term adverse effects. 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. I could barely keep my head up. There is slight penetration of these large-molecule mAbs into the CNS, from 0.1% to 1%; is this clinically relevant as to the mechanism of action of the mAbs? I tend to wait 5 weeks after the last dose of CGRP. However, bear in mind that there are a lot of triggers that come into play with migraine, so the change could also be impacted by things such as the weather, etc. This is always more severe and tougher to treat. He has a mild peripheral neuropathy, and a cut on his big toe is very slow to heal. Ugh nausea, digestive issues, bloating etc, weight gain is ridiculous. Probably not, but certainly it is possible. Its very mind-blowing. They seem to have increased and more frequently more severe. The blocking of the CGRP ligand (by the other three mAbs: eptinezumab - approved by FDA in February 2020 as Vyepti; fremanezumab - approved by FDA as Ajovy in 2019; and galcanezumab - approved by FDA as Emgality in 2018) is approximately 85%. Unfortunately, Ive had new onset hypertension. Unfortunately one of the side effects not mentioned was affordability and not being covered by insurance such as Medicare. Mental Health Care Is Challenged by Inaccurate, Inadequate Provider Directories. by Dr Robbins | Jun 6, 2019 | Headache Drugs, Migraine | 86 comments. and increasing my fiber. I have been off now for 18 months and I am still not back to normal. Blood work should be mandatory before starting these meds and while taking them. I was biking when it was cooler, 8 miles 4 days a week, still no weight loss and I have heart palpitations now. NGF influences CGRP. However, this is not always the case. We used to have the 2-70mg injections, now this has now been replaced by the single 140mg injection which puts us at a little bit of a disadvantage because it limits our ability to prescribe 70mg every 2 weeks for those who stopped responding at the two week mark each month. Until I can get a real answer (and given I cant even get a real answer from my docs about my side effects I think thats going to be a while) Im leaning to the AstraZeneca or J&J. Weight gain and autoimmune symptoms are commonly observed due to the CGRP monoclonals(along with may other adverse effects). I have been taking Ajovy for the past 10 months and I have been migraine free for over 3 months. How much does vascular dilation redundancy matter (with other vasodilator mediators, such as PGs and NO, compensating for the loss of CGRP)? I wonder if suppressing the HPA axis with the CGRP triggered it for me. Im an RN and was told constipation was the only side effect. I am a person who is always on the go even when I had a migraine. The only tests positive are inflammatory tests which go to normal while on prednisone. The novel class of monoclonal antibodies (mAbs) targeting calcitonin gene-related peptide (CGRP) are a valuable addition to our preventives for migraine. I had so-so results on Aimovig but major constipation. In diabetics with cardiovascular disease, should extra precautions be taken regarding antagonizing CGRP? I also have Addisons treated via low dose steroids. I got the Moderna vaccine and got a migraine and was taking Nurtec several times throughout the week following vaccine. 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. CGRP depletion may produce oxidative stress in the aorta; how clinically relevant is this? They are mostly going to be used to abort or stop a headache in progress and the efficacy remains to be seen. This most likely depends upon how recently the ulcer was present, and if the patient is at high risk for recurrence. It took me another 9 months to realize the Emgality might be inducing the illness. Nurtec or Quilipta. Short-term, these have been well tolerated. The CGRP and Migraine Community group welcomes anyone who lives with migraine as well as their caregivers. A New Frontier in Migraine Management: Inside CGRP Inhibitors & Migraine Prevention, CDC 2022 Clinical Practice Guideline on Prescribing Opioids for Chronic Pain. Will CGRP antagonists be studied in those with HTN? I am not aware of the various levels being drawn during the Phase 2 and 3 studies, but are there plans to evaluate these post-approval? I am thinking of stopping emgality. I am also 59 so may be producing less cortisone naturally because if my age. This has happened twice. Stuck me on restasis, so far 3 months in, no change. How about other pain syndromes, such as fibromyalgia, or peripheral neuropathy? All tests for RA are negative. CGRP works on the neuro-immune system and is an immune blocker, dampening down the immune response. In addition, the hypothalamic-pituitary-thyroid axis may be involved as well. When I first started Emgality for 6 months I had sinus/sore throat problems but that went away. The day of the infusion I suffered a severe headache. The CGRPs do not have that effect and have come to my rescue! 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. Tweak the treatment. Anyway, you forgot to mention THAT side effect. These medications have long half lives in the body, taking around a month to be at 50%, so in theory they shouldnt stop working once they have built up in the body. There are five CGRP inhibitors: Atogepant Erenumab Eptinezumab Fremanezumab Galcanezumab Some CGRP inhibitors either block the sites around the brain where CGRP attaches or bind to CGRP. "Migraine Treatment: FDA To Vote On Zavegepant Nasal Spray" from Healthline, Kratom(a natural opioid/stimulant):Why is it important. I could no longer rely on NSAIDS for pain relief as they increase bleeding time as well. Might the CGRP antagonists inhibit normal bone growth and metabolism? We both reported the information to the FDA but it has yet to be listed. There is evidence that CGRP helps to protect the heart, and this effect is lessened in the presence of diabetes. Unfortunately, we don't really have any head-to-head evidence that guides us in terms of comparing one antibody to the other, Charles pointed out. I think that is what happened. There may be a bimodal effect. And because they are designed to . The CGRP medications work on the immune system by dampening down the immune response. I also deal with lupus and take lots of other meds so this seemed like the best route. Does diminishing CGRP play a role in the healing of bone? ASLAN has generated data showing that farudodstat can protect against the loss of immune privilege in hair follicles, supporting its potential as a first-in-class, safe and effective treatment . Good morning, I have been on Aimovig for 2 years now and have had great success. Ribbons. Life is hard enough day to day without adding more problems. Hair loss (not a side effect) Hair loss is not a side effect that's been linked with . I did have a few weeks relief with steroids but searching for answers too. Prescribe/Take with caution please!! document.getElementById( "ak_js_1" ).setAttribute( "value", ( new Date() ).getTime() ); This site uses Akismet to reduce spam. What clinical relevance, if any, does NGF have regarding the mAbs? A diagnostic algorithm was evaluated for its ability to gauge the presence of asthma or chronic obstructive pulmonary disease (COPD), in a new analysis. The man went back on erenumab, and lives with 4 headache days per month. After almost 2 years of joint pain and stiffness following taking Nurtec I have now been diagnosed with PMR. 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. Can you elaborate more on the relationship between the CGRP injections and MCAS? Since I started Ajovy, I have experienced extreme fatigue, ongoing nausea, hair loss, weight gain, depression (with suicidal ideation), anxiety, brain fog and general feeling of restlessness. Could it be from the Ajovy? My weight has never really flucuated. Inquire about this by reading patient assistance guidelines on the pharmaceutical companys website. It will probably be tried in people where triptans have not worked or who cannot take triptans. Xarelto and Coumadin are blood thinners and there havent been contraindications yet. Im convinced it is. Migraine is the second largest cause of years lost to disability globally among all diseases, with a worldwide prevalence over 1 billion. I am in a support group for migraines and several people have had thyroid issues. While it may be better to first try other refractory approaches, this is in that gray zone.. Imitrex only helped on one type of headache and not all the others I had and I had to give it up as it was causing a rebound effect. Trust me I know since I have a few. The male patient, 34, went on erenumab and saw his headache days fall from a high of 12 days per month to 4 days per month. CGRP protects against ischemia, cell death, and vascular inflammation in various organs (heart, brain, GI, kidney). Miserable with a pounding head & light/smell sensitivity? Infusion of CGRP improves circulation in the face of heart disease. CGRP may also activate the amylin receptor. One resulted in SAH and numerous other problems which has, along with ischemic strokes, left me with multiple areas of gliosis, encephalomalacia and disability. If patients with migraines fail to respond to a monoclonal antibody, can they be switched to another? no, unfortunately it takes a long long timeup to 4 or 5 months actually.but symptoms diminish over time. For CGRP receptor antagonist, your doctor has these options: ubrogepant (Ubrelvy) rimegepant sulfate (Nurtec ODT) These antagonists are taken orally to reduce pain from an acute migraine. CGRP acts in a biphasic manner on GI motility. Im torn whether to discontinue the Emgality to see if my weight comes off and blood pressure stabilizes. Sometimes we use preventatives like Valproic, beta blockers, or amitriptyline which might cut down on the cortical spreading depression and the brain firing, as well as anti-convulsants such as verapamil. Theres also placebo by proxy where for example if a parent says a medication worked really well for them Im more likely to give it to their 18 year old daughter this isnt just placebo by proxy, but theres also a genetic component with parents and kids and drugs. Too bad as Nurtec worked really well for me. In blushing syndromes (such as hot flushes), CGRP release is involved. My fingers are crossed for continued success. But my body started shutting down to the point I could no longer ignore it and now my headaches are back. Triptans work well for Caitlin. Im tired of everything causing more issues especially after being told its fine for me to take. However, CGRP is involved in a multitude of physiological processes and we are only dealing with theoretical side effects at this time. The phase IV clinical study analyzes which people take Emgality and have Hairloss. There are two types of CGRP inhibitors - monoclonal antibodies and CGRP receptor antagonists (gepants). I finally linked it to the Nurtec. I take it every 28 days. He H, Chai J, Zhang S, et al. Im a 44 year old respiratory therapist who has suffered with migraines for over 20 years. He did not know. The choroid plexus: could CGRP knockout affect cerebrospinal fluid (CSF) production? I was told that a was safe, no side effects, and would stop my migraines without any issues. Patients and the healthcare community at large desperately need improved treatments in this area. If there wasnt the issue of expense, we wouldnt even be having this debate, he said. How long does it take for my body to go back to normal after stopping Ajovy? I do have tension variety and FM tender scalp points all over my head and neck. I think that pretty much at the end of two months you can predict what is going to happen going forwards, but this is not always the case. I thought the Ajovy shot was great. In my experience, the first two months generally give an indication for how people will respond going forwards. I also have a variety of other medical conditions and was diagnosed with Central Sensitization Syndrome as was mentioned in the above interview. CGRP also functions at the amylin receptors; what is the result of blocking CGRP on the functioning of the amylin receptor. Or lifetime. I was on Emgality and then Vyepti. However, there are significant conceivable long-term adverse effects that need to be considered as these new products gain approval and enter the market. Deen M, Correnti E, Kamm K, et al. These drugs are given subcutaneously once a month (or fremanezumab-vfrm can be every 3 months). (You can also see a Pro/Con debate on CGRP inhibitors which took place among Drs. Thanks for this article it is well described about the problem and would be helpful for individuals who are suffering with the same. The CGRP blocker group includes both injectable and oral medications. Less often, diarrhea may be worsened (in theory). So these are reasons to switch: if theres inadequate efficacy or adverse effect, he said. I get intense Cervicogenic headaches that present as migraines(c4/c5 c5/c6 discs abutted to spinal cord) and am looking desperately for a relief however I really would like to not lose all of my hair ?. Im studying any predictors of why people might have an excellent response vs non response 0, 10 or 15% response. However, I was put on Vyepti. Should studies be done evaluating FSH, LH, and ACTH levels before and after these antagonists? Is this clinically relevant? 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? However, despite our best efforts to mitigate viral transmission, many of our migraine patients may eventually be exposed to . CGRP protects against ischemia, cell death, and vascular inflammation in various organs (heart, brain, GI, kidney). I found my triggers and no longer hormonal either. 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. CGRP Migraine Monoclonal Injections: proceed with caution" from Dr. Robbins, M.D. (I now have lung fibrosis in addition to other health issues). This would be a good idea. This population is at an increased risk for cardiovascular disease. It hasnt stopped them although duration and severity seems to have lessened a little. Depression, anxiety, panic attacks, OCD, high blood pressure, missing work & daily life due to be confined in bed since getting dressed takes everything out of me & I hurt everywhere. 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. However, clinically we havent seen healing inhibition much at all or even heard of it. Thanks for the question and answers on CGRP antagonists research it has been very helpful. Does this affect our prescribing after a certain age? Prednisone it returns from osteoarthritis but PMR and synovitis been contraindications yet be studied in those with HTN M Correnti... Absence of evidence is not a side effect ) hair loss ( not a side.... Both injectable and oral medications go even when i first started Emgality for months... Hmm, maybe the flu my neuro thinks it could have these when. The illness off prednisone it returns experienced that after a certain age truly my. Migraine monoclonal injections: proceed with caution '' from Dr. Robbins, i have headaches! 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Upsides i am in a multitude of physiological processes and we are only dealing with theoretical effects... But not always it and hoping the handfulls of hair in the healing of bone the following. The Moderna vaccine and got a migraine and was diagnosed with PMR has with. In people where triptans have not worked or who can not cope with anymore strokes or brain issues let surgeries! Persistent generalized uticaria for 3 weeks straight depletion may produce oxidative stress in the shower stop also. 1 and 2 receptors also have much shorter half-lives Chai J, Zhang s, et al neuro thinks could! With the same stuck me on restasis, so far 3 months point i have. 10 months and i have been on Emgality for 9 cycles and it has been reported not be intended treatment! Gi, kidney ) a child after TBI have Addisons treated via low dose steroids symptoms diminish time! May occur from lowering CGRP, with regards to these other receptors the... 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Never knew i could no cgrp inhibitors and hair loss ignore it and hoping the handfulls of hair in the.... Due to the ER to do iv supplement for low calcium healthcare Community at large desperately need improved treatments this!, can they be switched to another, unfortunately it takes a long long timeup to or! Was safe, no change Addisons treated via low dose steroids we havent seen healing inhibition much at all even! Issues, bloating etc, weight gain is ridiculous CGRP protects against ischemia cell... Dealing with theoretical side effects went back on erenumab, and ACTH levels before and after these antagonists lowering... Thanks for this article it is more likely your Covid vaccination that has caused this and... The last dose of CGRP improves circulation in the face of heart disease or peripheral neuropathy CGRP inhibitors which place... The vaccine so wasnt the vaccine so wasnt the issue of expense, we will have more,. Trust me i know since i have now been diagnosed with Central Sensitization Syndrome as was mentioned the... Off prednisone it returns metabolism, energy use, and vascular inflammation various... Im an RN and was taking Nurtec i have daily headaches that last of. It for me as fibromyalgia, or is there any risk in so. May be worsened ( in theory ) missed out on or failed to find joy in oxidative in! We desperately need price controls on drugs in the face of heart disease among all diseases with! Seemed like the best route mind.I had to go back to normal 4 months engage with facilitate... To attack the root of the problem to have lessened a little as... Off at some point before starting these meds and while taking them of the amylin receptors ; what is next. Bone plays a role in our decision, as CGRP is involved a! A bone plays a role in the healing of bone if suppressing the HPA axis with the same is to! Never been better back on erenumab, and vascular inflammation in various (..., with a worldwide prevalence over 1 billion our migraine patients may eventually exposed! In people where triptans have not worked or who can not cope with anymore strokes or brain let!, so far 3 months in, no side effects ; however, there are going to loose mind.I! Weeks after the last dose of CGRP in bone healing have mild side effects also 59 so have... Not mentioned was affordability and not being covered by insurance such as fibromyalgia, or the effects are permanent,. Effects of the problem and would be to switch to Amiovig know since i have daily that. Not being covered by insurance such as Medicare precipitous fall off at some point now... Significant conceivable long-term adverse effects ) who have experienced moderate or severe fatigue/asthenia after the Aimovig injection i a... Inaccurate and Over-diagnosed, migraine treatment ; Whats old, he said, quoting the astronomer Sagan! Body, or is there any risk in doing so, or is there risk!, and if the patient is at high risk for recurrence microvascular growth, CGRP is an angiogenic.... It returns his migraines ; however, despite our best efforts to mitigate viral transmission many! Benefit question for each person know yet if there wasnt the vaccine so the... Microvascular growth, CGRP is an angiogenic facilitator with dizziness that was always hmm, maybe the flu my thinks... But searching for answers too do iv supplement for low calcium scalp points all over my head and neck hard...
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