It’s only been a month – but what a month it has been for Liz. Liz hasn’t had the easiest time of it health-wise. A longtime migraineur and fibromyalgia patient, Liz has had to endure a bucketload of mostly immune health problems that have probably stemmed from a systemic autoimmune disease. They’ve included gastroparesis (age 25), psoriasis (age 27), rheumatoid arthritis (age 29), fibromyalgia (age 36), etc., and then to top it all off, she had breast cancer at 42.
Migraines, though, were her first debilitating condition. They showed up when she was 17 (she’s now 45). For the first 20 years, the ocular migraines – with aura and only a little pain – weren’t so bad. She could take a Tylenol and close her eyes for 20 minutes and be okay.
Around the age of 35, though, she began to have full-fledged migraines – light sensitivity, excruciating pain, nausea, vomiting, etc. – and developed fibromyalgia at the same time to boot.
Over the past nine years, both the migraines and her fibromyalgia have gotten progressively worse and made her life a living hell. As time went on, more and more things could trigger a fibromyalgia flare or migraine. Cleaning (especially utilizing her arms a lot, like folding laundry, washing dishes and vacuuming), most exercise, shopping (carrying heavy bags, going through racks of clothes, and especially the process of shoe shopping), walking in the wrong shoes (she wears tennis shoes most days), sitting in the wrong chair (she has a recliner and that is pretty much the only place in her house she can sit for any length of time – and she would still get a migraine from sitting too long), certain foods, alcohol, smells, light, and the list goes on.
Often her fibromyalgia symptoms would start first – the wide-spread pain and tenderness, usually in her upper back, upper arms, shoulders and neck, her skin that felt tender to the touch and sometimes on fire. Then it would move into her head. It felt like she could feel the inflammation, blood vessel dilation, and finally the irritation of her trigeminal nerve progress to a migraine.
She’s thrown everything she could at them: cold packs, heat packs, a Cefaly device (tens unit for the forehead), Advil, Tylenol, cold sprays, antidepressants, topamax, gabapentin, mild muscle relaxers, clonazapam, massage, acupuncture, chiropractics, trigger point injections with lidocaine (the latter four, unfortunately, turned out to be triggers for her Fibro).
Both Liz’s migraine and her fibromyalgia symptoms have diminished dramatically while on the new migraine drug
(She found out during her cancer that she has a genetic mutation (on the P450 CYP2D6 pathway) that prevents her from metabolizing many of these medications, which could well explain why the other preventative medications haven’t worked for her.)
Her only relief during the last 8 of 9 years was a triptan drug called Relpax which she could only take twice a week or risk rebound headaches – and her insurance didn’t even cover enough pills for that. Over time as Relpax began to lose its efficacy, the migraines began lasting longer and longer.
She’d reached her wits end. Even her neurologist had given up on her. This year, after switching neurologists, though, her new doctor suggested one of the new CGRP inhibiting drugs – Ajovy (Aimovig or Emgality are also available and another new one will be out soon).
In the 39 days since starting Ajovy, she’s had but a single slight migraine and, get this, no fibro flares since then. Her triggers: shopping, cleaning (a LOT of cleaning), alcohol (!) – are not triggering. She has more energy, her sleep has improved, she has less brain fog and cognitive dysfunction and more mental clarity. She hoped the drug would work for her migraines but got an extra bonus when her fibromyalgia symptoms subsided as well. She said,
“I feel like I have my miracle! 9 years of chronic migraines and Fibro with nothing working – during such an important time in my kids’ lives. I felt like a horrible mother and wife. I had a hard time cooking and cleaning. My husband would have to pick up the slack when my kids were still little. I’d have to go hole up in a dark room and hope to sleep it off. I can’t tell you how close I was to just giving up. The pain just made me bitter, grumpy, and I felt useless. It affected every aspect of my life, and my husband and kids were resentful (as if I could help it – the cancer was like adding insult to injury).”
She will be taking one shot every four weeks. She has had several other friends who have had success on this medication, or others in this class, and they still have a couple of migraines a month. For some the drug doesn’t work at all, for others – about half – it cuts their migraines in half, for some it cuts them by 75% or more. With her almost total reduction of migraines and fibro-flares, she appears to be something of a super-responder.
She stated, “I really do hope this line of immunology drugs are the answer for so many with chronic pain conditions, like migraine, FM, ME/CFS, Trigeminal Neuralgia, MS, etc.”
She has reason to be optimistic regarding the power of this line of next-generation immunological drugs. Liz had a form of breast cancer called HER2 positive, which was treated (in addition to surgery and chemo) with monoclonal antibody drugs called Herceptin and Perjeta.
Those new drugs may have saved her life. Survival rates for HER2 positive breast cancer prior to the introduction of the new monoclonal antibody drugs was just over 50%. Now it’s up to 95%.
Noting that, “these new migraine meds are also made from monoclonal antibodies,” this is her second big success with a monoclonal antibody drug. Just as the Herceptin blocked the HER2, the new migraine drugs block the CGRP receptors. She said, “It truly fascinated me that these meds can manipulate these antibodies to target specific proteins! It’s wonderful that another immunology drug made from monoclonal antibodies is saving my life once again because I truly felt that migraine disease and fibromyalgia were even worse than my cancer!”
A Fibromyalgia Connection?
Perhaps the best question to ask about the drug’s success with Liz’s fibromyalgia is not why it happened but why would it not? The two diseases, after all, seem to be inextricably linked and the protein the drug is targeting may be key to hypersensitive pain states.
One large study (n=1700) found that no less than 56% of fibromyalgia patients met the criteria for migraine, and that the “penalty” for having both conditions was steep indeed. Women with FM and migraines were more prone to having a variety of other ailments including hypertension (p<.004), asthma (p<.01), irritable bowel syndrome (p<.02), depression (p<.0002), anxiety ( p<.001), PTSD (p<.005) and finally (and most of all) chronic fatigue syndrome (p<.0001).
In fact, the whole constellation of diseases associated with ME/CFS and FM (GWI, postural orthostatic tachycardia syndrome (POTS), IBS) appear to share an increased prevalence of migraine. Migraine, ME/CFS, FM and irritable bowel syndrome are among the eight pain conditions a 2015 NIH report proposed “share common underlying disease mechanisms”.
The new migraine drugs target a protein called Calcitonin Gene-Related Peptide (CGRP) found in nerves and blood vessels which appears to play a key factor in the development of both peripheral and central sensitization as well as inflammatory and neuropathic pain.
In migraine, ME/CFS and FM, exertion and exposure to stimuli often must be curtailed dramatically. Whether in the midst of an ME/CFS crash, fibro flare or migraine attack, hypersensitivity to lights, sounds and odors are common. The following description of a migraineur’s brain sounds very much like an FM, ME/CFS, or multiple chemical sensitivity patient’s brain.
“A migraineur’s brain is like a car with a heightened alarm system that ‘goes off simply because you walked close to it.’ In the end, the brain reaches what Sigal describes as a ‘permissive’ state, in which normal light becomes very bright, normal sounds very loud, ‘and you can smell a perfume two blocks away from Bloomingdale’s.’ CGRP-binding antibodies help turn down the volume in the trigeminal nerve, by ‘mopping up’ excess peptide or preventing it from binding to and activating cells…” Underwood -ScienceMag
Baraniuk and Rayhan have even suggested that a migraine-like model may apply to ME/CFS. They propose that the more short-lived cortical spreading depression (CSD) found in migraine – which results in hypoxic conditions and an emphasis on anaerobic metabolism – may have become chronic in ME/CFS.
The anti-CGRP drugs inhibit the sensory neurons in the trigeminal system from releasing CGRP. The trigeminal nerve, the largest and most complex in the head, regulates sensations in the head, neck, sinuses and jaw. Nerve activation in the trigeminal vascular system – which, interestingly, originates in the brain stem – can result in CGRP release, vasodilation (blood vessel swelling) and mast cell degranulation (inflammation)…and migraines.
Since CGRP is also found in other areas of the brain and spine known to be affected in FM, one wonders if the new drugs could affect those areas.
The new drugs may not be easy to get. Insurance companies will probably require the failure of two less expensive migraine drugs before they will cover the $7,000 a year or so the new drugs cost. Whether or not the new migraine drugs will work in FM, their introduction has buoyed researchers attempting to understand and treat chronic pain. Hopefully, studies will begin assessing CGRP levels in fibromyalgia.
Michael Moskowitz MD of Harvard believes that a successful run of anti-CGRP drugs will cause drug companies to ramp up their efforts to deliver treatments for diseases like fibromyalgia. They may very well do so in conjunction with the HEAL Initiative – an NIH funded public-private enterprise which aims to bring new pain-relieving drugs to the fore.
Note that migraine is greatly underdiagnosed and you could be experiencing migraines without knowing it – and possibly missing out on a new generation of drugs which may help relieve your pain.
Find out more about headaches and migraine in ME/CFS and FM.
My migraine also disappeared when I started monthly injections with Amovig. It’s been a life saver. I haven’t had the alleviation of my Fibromyalgia symptoms like Liz, but I’m so happy that it’s worked for her!
That’s great to hear and thanks for passing that on.
I am a super responder to Aimovig- I go months w/o migraines. But I have lost more hair than ever-lost half of my hair. I use no products or appliances, just wear it straight. I do still get some silent migraines each month that make me stay home. I feel impaired so I don’t drive on these days-dizzy like. But not Menieres. Any of you losing large amounts of hair?
Lorraine – I’m glad that it has at least alleviated your migraine symptoms. I’m sorry it has helped with your Fibro symptoms. As I understand it, Aimovig works slightly differently (bonding the CGRP to itself vs binding the CGRP from attaching on the cell surface, as Ajovy and Emgality do). I don’t know if that makes a big difference, but I have had friends fail Aimovig and thrive on one of the other two). Just know that you have these other meds in your back pocket, if you ever wanted to see if they would work on both the migraines and Fibro.
I’m so excited that they are working for many. Nothing else has worked as a preventative for me.
“CGRP-binding antibodies help turn down the volume in the trigeminal nerve, by “mopping up” excess peptide or preventing it from binding to and activating cells…” Underwood -ScienceMag
THIS ?! I totally feel like the Ajovy has “turned down the volume in the trigeminal nerve!” Even if I don’t continue to get a perfect result, it has made such a huge difference because that nerve is not transmitting magnified/excessively amplified pain signals everywhere anymore. It has been dampened.
Thanks for sharing my story, Cort. I hope someone finds this information and is able to just try these meds and see if they can finally get some relief! And I hope that the research continues to see if they could be utilized for pain conditions other than just migraine disease.
Your story is so encouraging Liz and such a validation of so many people’s ‘invisible’ suffering.
Thank you, Tracey!
Does anyone know or comment on if ty CGRP can worsen gastroparesis? Ajovy has been a lifesaver for me with my chronic daily migraines but I wonder if it has worsened my stomach motility?
Migraines were the worst symptom I have had, by far, since I was diagnosed in 1985. In the early days, my doctor was treating me with a pill form of heparin. When I got a really bad migraine, a shot of heparin at his office would knock it out. But, the migraines continued several times a month for years, until I tried a protocol that included alternating nasal sprays of colloidal silver with EDTA. The headaches disappeared and, thankfully, have never come back. I was trying to figure out why this may have worked when I found some research that said EDTA, a chelation agent, also has anticoagulant properties. Maybe putting it directly in the nasal passages worked better than taking pills.
Would you please let me know this protocol?
Moonnikkiastro@gmail.com
I am a migraine sufferer and member in many migraine groups on FB. The CGRP groups are full of complaints and adverse reactions, the kind of adverse effects that chill me to my bones.
Some typical adverse effects: Constipation the size that needs hospitalization, bronchitis, pneumonia, hair loss, weight loss/gain, nonstop migraines for 2-3 months from 1 shot, fever, hypertension requiring beta blocker with the CGRP, major inflammation requiring Prednisone at the time of the CGRP each month, etc.,
As a researcher and a migraineur, I have worked to find the cause of migraines. Migraine is a channelopathy, requiring more salt than a regular brain. Migraine is preventable by reducing carbs and increasing salt in a special way. Thousands of migraineurs heal using the Stanton Migraine Protocol. Fibromyalgia & CFS respond to the same protocol.
Thanks for passing your protocol on. Reducing carbs and increasing salt certainly is a common practice in ME/CFS. Interesting…:)
Strange that your group would report so many side effects. In pretty much all of the studies, the side effects from CGRP inhibitors appear to be no different than those of placebo. The long-term effects are still unknown, but in terms of short-term effects, the studies really haven’t shown major side effects. I’m not denying or arguing with anyone else’s experience, that’s just what the research shows. I hope the folks in your Facebook groups are able to find some relief!
When Aimovig first became available, I looked into it. The FDA report mentions two sudden deaths, one miscarriage, one attempted suicide, and more out of 2499 patients.
https://www.accessdata.fda.gov/drugsatfda_docs/nda/2018/761077Orig1s000MedR.pdf
People with any other medical problem in addition to migraine were excluded from the studies. And there were only a few studies done before it was approved. In other words, if you have an autoimmune disease, CFS, Lyme, heart issues, ANYTHING, and you take an anti-CGRP med, you are a guinea pig. The side-effects that people are reporting are legit. Have a look at the reviews on drugs.com.
“The long-term effects are still unknown…”
Ahhh…the devil seems to be always in the details. So many drugs are put on the market without the benefit of long term studies, until we realize the side effects of those drugs are making us sicker.
One example is MRI contrast which contains the heavy metal toxin, gadolinium. After 30 years of use, still no long term studies, but many sickened people. Btw, gadolinium retention has no antidote. Check out gadolinium toxicity.
Thank you for raising the issue of side effects Doctor. I did not research Aimovig after I left the neurologist’s office with the “free sample”, feeling fortunate to have this “miracle drug”. Little did I know that the side effects would be so severe. The migraines are now back in full force with a healthy dose of constipation.
Hoping the detox will feel better as the time goes on, so far not so much.
See Ryan’s comment for another perspective
Migraine is also seen in Eagle Syndrome. I also heard lots of time Rheumatoid Arthritis is Not Chronic Fatigue Syndrome so I question her diagnosis
I have to wonder how many of these sufferers have had an MRI with contrast. Please check out the toxic side effects of MRI contrast containing the heavy metal, gadolinium. It is retained in the body for years, even with normal kidney function.
https://gadoliniumtoxicity.com/
Angela – Your opinion is valid. I was concerned about possible side effects, but nothing, including changing my diet, was working and I was willing to take the risk. I had failed all of the other preventative meds because I don’t metabolize them well due to a genetic mutation. I have had NO side effects on Ajovy whatsoever. In trials, every single symptom has to be logged, so many of these may not even be related to the medication.
Your salt theory is interesting. I also have autonomic issues and tend to salt load a bit to keep my blood pressure up. It would not surprise me at all if these issues, my autonomic issues and my migraine disease, were related and share mechanisms. Low carb alone certainly didn’t help me and because of how I was eating, I was also probably eating more sodium than usual, as well.
Anyway, I appreciate the alternative choices that people make, foregoing medications, but I was desperate, as many are, and it gave me my LIFE back! I’m alive again! I missed out on so much during that 9-10 years! And I know several people who have also had a life altering experience. It does not work for all – maybe only half or less, but it works for many. We need all of the new options we can find for those of us that have failed other protocols, be they diet or medication.
Hello
I have migraine and fibromyalgia and I have taken Ajovy since two weeks ago. I wonder how long (weeks and days) did it take for you Liz before you started to feel the effect and reduced symptoms of migraine and fibromyalgia?
Dear Angela,
I am interested in hearing more about your protocol. However, as a non-Facebook user, I feel rather excluded. I notice it is made freely available on FB, but is there a chance I could obtain a copy another way?
How might one go about accessing these medications? How expensive are they and wouldn’t accessing them require getting seen by a doctor? How does one know whether they are available at ant given time and where?
Yes, they will definitely require a prescription. Without insurance covering them one site said they would cost about $7000/yr.
The effect of CGRP antagonists makes sense. TRPM3 is implicated in FM and it may/likely be the target of the IGg auto-antibodies. Activation of TRPM3 is also associated with CGRP – both of which lower thresholds of the Adelta a C fiber nociceptors. Hence the strong connection of FM with Migraine. (The TRPM3 agonist CIM0216 elicits the release of calcitonin gene-related peptide (CGRP) from sensory nerve terminals and insulin from isolated pancreatic islets in a TRPM3-dependent manner*)
* Held, K. et al
Activation of TRPM3 by a potent ligand reveals a role in peptide release
Proc Natl Acad Sci U S A. 2015 Mar 17;112(11):E1363-72
CGRP mediates neurogenic inflammation and CGRP released from the trigeminovascular network of neurons is currently recognized as a main contributing mechanism of migraine attack.
This is more associated with TRPA1 and agonists of TRPA1 are also known migraine initiators.** However it must be remembered that TRPA1 activation is often linked to activation of TRPM3.
** Benemei, S. et al.
TRPA1 and other TRP channels in migraine.
J Headache Pain. 2013; 14(1): 71.
This is more associated with TRPA1 and agonists of TRPA1 are also known migraine initiators. However it must be remembered that TRPA1 activation is often linked to activation of TRPM3.
There are many variants of the TRPM family, TRPM3 has 6 known variants. Some channels have splicing variants that modulate many channel and cell functions. Some TRPM3 gene polymorphisms are associated with systemic sclerosis. (I say this only to exemplify the broad effects of TRPM3 SNPs and variants. – they are not just the base channels of nociceptors).
I strongly believe that the IGg auto-antibodies to the Melastatin family of ion-channels underlies FM, ME/CS and MCS. The melastatin ion-channels are strongly implicated in all sensitivities: heat, shear-strain, sensory modulation (DRG), and fatigue.
Hi Liz, by any chance would you have become a lot more “zen”? Like in a lot less anxious, calmer, less emotional swings, easier sleep, less easy to get angry, almost like being in a sort of small meditation or yoga state compared to what it was before… as a side effect too?
Dejurgen – The first month definitely felt that way. I just attributed it to the fact that for the first time in 9-10 years, I didn’t have pain on a daily basis and felt clearer headed and I was sleeping better. I still have some anxiety – I am the mom of two teenagers ?. I think the first shot was better than the second (I think these meds can be a little fragile, having to be refrigerated and not shaken). I have heard that for those that respond, it can get even better with time. I’ve just have a good experience. I know that not everyone will, but that’s the case with many meds (I failed ALL of the other preventative drugs marketed toward migraines and diet protocols, so the fact that this worked for me was a miracle! It gives me hope for so many.
Seems worth mentioning that the next anti-CGRP drug (slated for a November release) is actually a short acting oral med. It’s a migraine abortive, not a preventative. It will be the first migraine abortive that will not have limits on how many you can take per month.
It’s part of a new class of medications called Gepants.
Ryan – That sounds great! So many are afraid to try the CGRP inhibitors because they fear that if they cause an adverse reaction it would last a long time because of an extended half life, so that soundsike a good way to test if you are a responder. I would have been very happy just having something that wasn’t limited in the number I could take, but I’d much rather have a preventative and never have to worry about triggering a migraine in the first place. I had so many triggers and was so limited in what I could do on a daily basis without triggering one (I couldn’t properly take care of my family). I would probably be taking this new abortive med daily. I know I had a friend who was doing that with Relpax. She is now on Ajovy and virtually migraine free. She is the reason I gave it a try because we were so similar.
Very glad that it worked out for you. I’ve had bad reactions to all sorts of medications, so I understand trepidation. However, I’m encouraged by the currently available research: side-effects appear similar to placebo. Hoping long-term use doesn’t become problematic.
Botox is just beginning to have an impact on me, so I may not end up taking CGRP inhibitors as preventatives. We’ll see…
So, I don’t know how often folks go back and read comments on earlier posts, but I ran across this in my EDS forum about fibromyalgia and thought it very, very interesting. People with Ehlers-Danlos often have neuropathic pain (and myopathic too) which sometimes gets classified as fibromyalgia.
In the following link, researchers have discovered that almost half of those diagnosed with fibromyalgia (and not just people who have been diagnosed with Ehlers-Danlos!) actually have small fiber neuropathy and of those about (if I remember correctly) one third have identifiable causes and helpful treatments.
For those who have been summarily dumped in the ‘fibro bucket’ listen up! https://www.ncbi.nlm.nih.gov/pubmed/31498378 You may actually have something else–and it may be treatable.
Yes, indeed – check out the blogs in our small fiber neuropathy resource center
https://www.healthrising.org/small-fiber-neuropathy-resource-page-fibromyalgia/
Just a 3 month check in! That one mild migraine I had 4 weeks in to to taking CGRP inhibitor was my last to date! So, no migraines in the last 2 months!
I have gained some weight. I don’t think this is a usual side effect, but I have read that migraneurs often lose their appetite just before, during and after a migraine, so maybe I just have more of an appetite because I feel AWESOME! I did also go a little crazy with the alcohol the last few months (not overdoing it, but much more often than usual) because I haven’t been able to drink without getting a migraine for so long, so that could have also contributed to the weight gain ?!
I really do feel like a new person. Still hoping that this new line of meds translates to pain relief for multiple conditions. The lack of chronic pain I now feel – or don’t feel – is crazy (I had it for so long that I didn’t even know how bad it was – I actually got carded for alcohol at the grocery store because the lack of pain has caused my constant furrowed brow to go flat again – it’s the little things ?).
Anyway, that’s my update. Hoping people who find this thread find ways to alleviate their pain!
It has now been a year, so I wanted to do an update.
I still feel like Ajovy has changed my life. I have experienced more migraines this year than last. I believe that I had to go through allergy season (a big trigger for me) and being stuck at home for Covid has made me less active (another trigger for me is sitting too much). Overall, I still don’t have the Fibro symptoms I lived with for a decade and I usually only get migraines from alcohol, though other things will still trigger one. I can still take my rescue meds when I need them and I never worry about running out, as I did before. The CGRP inhibitors are simply the best preventive migraine med to come out with the least amount of side effects (that we know of thus far, anyway). I realize they only work for half of migraineurs, but they are certainly worth a try! I’m so thankful!
Hello Liz
I have migraine and fibromyalgia and I have taken Ajovy since two weeks ago. I wonder how long (weeks and days) did it take for you Liz before you started to feel the effect and reduced symptoms of migraine and fibromyalgia?
I have lichen sclerosus (auto immune) which started in February as severe continuous vulvar itching and went on for 3 months. It disappeared completely, overnight, for 3 months then came back overnight and I’ve been suffering since August despite continuous strong steroid creams. I took Ajovy for 3 months this year. I recently realised that the 3 month remission coincided almost to the day that my Ajovy side effects started, and the itch came back a day or two after the Ajovy side effects wore off. From what I understand, CGRP causes an increase in cytokines, leukocytes and prostaglandins. I think Ajovy may have lowered the cytokines which cause the inflammation, and lowered the leukocytes and prostaglandins which cause the itch. I can’t find anything about this anywhere but it needs researching as lichen sclerosus is horrific.
I also have Lichen Sclerosus – it was bad about 10 years ago when I “just” had migraines and before I had Small Fiber Neuropathy / POTs / probably ME/CFS. I had the same experience of symptoms disappearing when I went on Nortriptyline for migraine prevention. I went off the nortriptyline and it hasn’t come back other than occasional flare ups. I have pretty consistently been on a daily preventative migraine med of some kind or another since then. I’m sorry your’s has come back. It’s maddening.
Cort – I’m here to update after 2 years on Ajovy. Last year, I had a few more migraines during a really stressful time during Covid (still nothing like fighting them and fibromyalgia flares every day before starting Ajovy in August if 2019), but this year has been great! Honestly, I’m so thankful for this medication! It truly gave me my life back.
This morning I also had an epiphany. I have lived with varying degrees of Gastroparesis (slow digestion – can’t eat many things because they make me very ill) for the last 21 years and recently I have been able to eat more of the things I haven’t eaten in years (things with skins, high fiber things, etc). I realized that it coincides with starting this medication. I am not saying that this drug is a cure for Gastroparesis, but I did do some cursory research and saw that CGRP does localize in the gut and could be a party in slower gastric emptying by increasing smooth muscle relaxation and decreasing muscular contraction (future studies needed). All of these years, I was told my Gastroparesis was idiopathic or autoimmune related, but apparently, it is also common in migraineurs! Who knew? I didn’t. So, for those that have this as a side effect of your migraines (slow gastric emptying) the CGRP inhibitors have alleviated that for me, too. I feel like someone needs to study me ? (they are least need to do another gastric emptying scan – mine used to come back “severely impaired” – I wonder what they would show now, since I can ears these things and not get sick). Seriously, migraines, fibromyalgia and Gastroparesis all significantly improved by this one medication. I’ve always said so many of these issues really do run together. The same mechanism, elevated CGRP, can be a trigger in all 3 of these health issues.
Anyway, 2 years down and so much hope! I’m just praying that the long term side effects don’t win out in a bad way. Honestly, I was in so much pain all the time, I was at my wits end, so I’ll take what I can get now. I have to be able to take care of my kids.
Prayers for pain relief to you all ?!
Hi Liz thank you for all your input & Cort!
Liz could you pass along the contact for the dr that helped you out with the Ajovy infusions. If it’s more convenient yiu could email me at CLCHALBAUD@gmail.com
I would definitely like to have a word with them to see if I could be a candidate. I’m doing This 6 years …Antibiotics for Lyme/Bart and it’s really not budging.
I am high positive on the EpicGenetics FM/a Fibro test. So my immune is compromised based on their research.
Stem cells work for some time and the Covid vaccine (AstraZeneca) has lifted my symptoms by 85% on 2 occasions. So I know from all that I have trialed that by body is responds best to immune modulation modalities.
Thus Ajovy could be my answer!
Hi Carlos! My regular neurologist prescribed the Ajovy for my migraines. I would recommend going that route to start. I don’t know if any docs are filling Ajovy prescriptions off label for Fibro yet (but I’m sure some are). It has been amazing that the reduction in CGRP has alleviated my symptoms for migraine, Fibro and Gastroparesis. I don’t know what the long term side effects will be yet, but I don’t have any upfront side effects from the injections (not infusions – injections you do yourself at home every 4 weeks).
They are currently in phase II trials with Fremanezumab (Ajovy) for Fibromyalgia. I hope it is an option for you.
Hi Liz I just realized i did not tell you thanks for the reply.
I trust you are still feeling well, I am thinking of trying the drug soon as well.
Big thanks to you.
This life…
Carlos – Still feeling amazing after another year! I’m hoping that you find some relief with the CGRP inhibitors!
I have EDS and Pots, but was never diagnosed with Fibro. I was diagnosed with complex regional pain syndrome after hip surgery. I tried everything, I got some relief from aquatic therapy and taking mast cells stabilizers/ antihistamines. Three years post surgery, I still could not sleep on that side of my body, or be seated in a car or otherwise for longer than twenty minutes.
I also developed migraines. My doctor prescribed Aimovig. That night, I was able to sleep on my side for the first time in years, and I was able to go on a two-hour car ride without pain. I was shocked. My doctor was also incredibly surprised. Over time, I stopped taking Aimovig (I had trouble self administering the shots) and my headaches seemed to have gone away.
Then I had terrible neck shoulder and arm pain that would cause total weakness and tingling in my hand, it would also trigger migraines. It was so bad I kept dropping things and really couldn’t use my right hand. I know I have a herniated disk in my neck, so I assumed, after dealing with these on and off bouts of extreme pain for over a year, that I probably needed surgery. My doctor prescribed Nurtec for the migraine. Low and behold, the intense localized pain in my neck/shoulder/arm is completely gone, along with the migraine. My chronic pain is at an all-time low.
I have not found any research or articles that ties Complex Regional Pain Syndrome to CGRP drugs, this article is the closest thing.
I am just so happy to have found relief, and also sort of in shock at how effective Nurtec at knocking out extreme chronic pain in places other than my head. I have tried most pain treatments on the market, I’m allergic to NSAIDS and opioids. This is the only thing that has worked for me, but it’s worked marvelously. I had practically given up on finding a pain treatment that also allowed me to stay clear-headed and without flue like side effects.
I really hope there is more research into the mechanism behind all of these overlapping and comorbid conditions and CGRP treatments.
That is amazing! Congratulations and thanks for sharing your story 🙂
IK – I truly believe that the CGRP inhibitors will revolutionize the treatment of chronic pain conditions! They are amazing! I take Ajovy for the migraines, but it also alleviated my Fibro symptoms, and I use Nurtec for a rescue med, if I still get a migraine (I still have some triggers, but the Nurtec works great).
Still crossing my fingers that it doesn’t cause other issues, but one can’t live life with constant pain and inflammation. It’s a quality of life now thing, for me.
I’m glad you’ve found them and had success!
If Liz is reading this:
May I ask if you prior to CGRP ever experienced getting a break from fibro pain when using triptans for your migraine?
Do you think it could be possible that some of the patients are misdiagnosed with fibro or ME, as pain, fatigue, brain fog, muscle weakness etc also can be related to chronic migraine?
Hi, Gigi! I did have temporary migraine relief with triptans (I took Relpax for years), but it was so short lived and you can only take them twice a week without getting rebound migraines and I never recall any help with the Fibro symptoms. I had IMMEDIATE and lasting relief with the Ajovy (both migraine and Fibro) and now if I do have a breakthrough migraine or Fibro symptoms (because I can still experience that if I do too much), I take Nurtec, which is also a CGRP inhibitor. I may have other mechanisms that trigger these disorders in me, but apparently, elevated CGRP must be a driving factor. It’s not for everyone, as these drugs only work in about half of the people who try them and to varying degrees. I am thankful, by hope that I don’t develop antibodies and have to stop taking it at some point. It has been my lifeline.
I can’t answer to whether some people are misdiagnosed. I was once told by my Neuro that any pain from the shoulders up in a migraineur was a migraine, but I don’t know. My Fibro pain was widely dispersed, but did stay in the area of my upper back, shoulders, neck and head and was a key contributor to the develop of my migraines. I do believe they are doing research to determine if the CGRP inhibitors can help with other pain conditions and I hope they can. It has been a miracle for me.
As an update, it is now January of 2024 and I have been taking Ajovy for 4.5 years and still have almost complete alleviation of my migraines and Fibro symptoms. If it is an option, I highly recommend trying Ajovy and Nurtec (I have no experience with the other CGRP inhibitors).
I do not get migraines but I have fibromyalgia and IBS. Will these new drugs help with my fibromyalgia pain?
Nobody knows but its possible. A couple of clinical trials in FM are underway.