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Hi, my name is Amélie, and I’m also the person that Kati was referring to in her post here.
I chose to start another thread so it could be put in the Mast Cell Disorders/Mastocytosis section – since I’m giving more information regarding what MCAS can look like, at least in my case, and not just addressing my specific treatment! I hope you guys don’t mind!
Basically, I was diagnosed with ME/CFS and fibromyalgia back in 2009.
However, in late 2015, I was seen by an internist in clinical immunology and allergology here in Montreal who (following a few tests, his clinical observations, the description of my symptoms and list of usual triggers, seeing a few pictures of skin lesions I’d brought him, as well as my current response to treatment) finally diagnosed me with Mast Cell Activation Syndrome (MCAS) in April this year.
I also have multiple associated environmental and food allergies (so I had very elevated IgE antibody levels on top of MCAS), and am allergic to Benadryl (Diphenhydramine), Aspirin (ASA), and Dilaudid (Hydromorphone).
As a child, I used to suffer from asthma and recurrent pneumonia (last crisis was when I was 12 y.o.), but didn’t suffer from any known allergies. Then, I developed eczema, an allergy to cats, and a pollen-food (or oral allergy) syndrome later in my teens.
Things remained fairly stable until 2004, a little before I turned 23, when I had a bout of shingles.
From there, I started suffering from recurrent URTI, fatigue, headaches, night terrors…
Then, in 2006, now aged 25, I had a mononucleosis. I did partially recover and was able to return to work, but I kept falling ill on and off with either URTI or a few mysterious, unspecified, “viral infections” (at least, that’s how the doctors diagnosed them. Basically, it just looked like I’d caught “some bug”, but they had no clue which one. Lol!).
I also began experiencing more and more health issues, such as:
- Crushing and persisting fatigue with post-exertional malaise and muscle weakness;
- Sleep disorders (sleep paralysis with lucid hypgnogogic and hypnapagogic hallucinations, idiopathic hypersomnia with morning drunkenness...);
- Skin lesions that came and went (little tender nodes on both ankles, small itching and bald patches on my scalp, red plaques on my chest when I take a bath, “rosacea” on my cheeks, small ulcers in my nose, etc.);
- Lower body oedema;
- Stiffness and aches, especially in the joints (causing more discomfort than real pain though – a bit like when you have the flu);
- Dysphagia;
- Gastrointestinal issues (nausea, cramps, vomiting, diarrhea alternating with constipation, abdominal bloating…);
- Frequent earaches and sore throats (but with no other sign of upper respiratory tract infections);
- Headaches;
- Swollen glands;
- More severe dysmenorrhea;
- Tremors;
- Palpitations;
- Excessive sweating, especially at night;
- Hyperventilation;
- Vertigo;
- Strong working memory issues, inability to concentrate, intense « brain fog »;
- Nosebleeds;
- Rectal bleeding;
- Occasional tinnitus;
- Sensory overload phenomenon. Inability to tolerate intense and/or multiple stimuli: especially noise, movement, lights, vibrations (ex: of the car), etc.;
- Body temperature regulation issues (often feels too cold or too warm);
- Bluish / pales extremities (feet especially, hands can get pale, but not white nor bluish); that can later become warm and a little red;
- Gradual emergence of new multiple food and/or environmental allergies and intolerances;
- When tired, especially, I often felt like the skin of my face was on fire, and it was indeed very warm to the touch (as if I was running a fever), but it didn’t really “flush” per say (i.e. didn’t become red);
- And so forth!
My family doctor back then gave me a diagnosis of ME/CFS, and I was evaluated just a few months later with a rheumatologist who gave me a fibromyalgia diagnosis.
In March 2012, Dr. Byron Hyde took over my medical investigations.
In November the same year, I made a short trip to Ithaca College (New York) to be evaluated by Dr. Betsy Keller (2 days CPET test protocol developed by Stacy Stevens).
Like most people diagnosed with ME/CFS, the results were that I had a very low anaerobic threshold (2.1 METS, roughly the effort needed to wash your hands), and my VO2Max dropped from 6.2 METS to 5.7 METS if asked to perform the same effort at a 24 hours’ interval.
While this should have convinced me that I was, indeed, a ME/CFS patient, I still felt the need to continue digging (and thankfully, Dr. Hyde was all too happy to oblige! Lol!), because I really needed to do all I humanly could to understand why this was happening to me.
Other significant diagnosis I’ve received since 2009 (not already named) include:
- Attention deficit / hyperactivity disorder (ADHD), predominantly inattentive type*;
- Dysautonomia;
- Hyperinsulinism with insulin resistance;
- Irritable bowel syndrome;
- Dermographism.
*Note: I’ve had ADHD since I was a child, but it had simply never been diagnosed since I was a bit of an overachiever at school, and very quiet in class (the kind of kid that doesn’t listen to what the teacher is saying, is unable to prepare for an exam in advance, but will somehow manage to study the night right before the exam in a panic and still get the top grades of her class!). At home, my parents compensated for most of my deficits – my mother, especially, who was a bit overinvolved in every aspect of my life. Plus, I’d developed a few personal coping strategies that involved doing everything at the very last minute when under a good rush of stress and adrenaline to be able to focus on the task (needless to say that being a nurse is probably one of the very best jobs for someone with ADHD given the high level of accountability and stress!). Obviously, the sudden lack of high energy reserves took all those instinctive coping strategies away since I could no longer rely on my ability to do everything all at once like I used to. ADHD + pacing and planning things in advance, and then especially EXECUTING said planning, doesn’t quite match! Lol!
The MCAS diagnosis obviously came as a great relief (and explained so much!!!), and was a source of hope since my doctor assured me that, although MCAS can be very difficult to treat, a few of his patients did manage to reach a very decent level of recovery, and were able to reintroduce some of the activities they loved into their lives!
Before my current treatment, I was virtually homebound (except for when I needed to go out for medical appointments). Otherwise, I could manage going to the movie theater about 4 times a year on a really “good day”, and/or the occasional family dinner with my partner’s family (thankfully, they are EXTREMELY respectful and understanding towards my illness, made special meals that wouldn’t trigger my symptoms, and allowed me to go rest in a quiet bedroom for as long as I needed during and/or after any family event).
I usually stayed strictly inside the house with very opaque curtains, because direct and/or indirect sunlight is one of my very worst triggers (this, combined with some of my skin lesions, made us think that I might have lupus at some point. However, my adverse response to sunlight is systemic rather than cutaneous, and I didn’t meet enough criteria for the diagnosis). Sunlight made me feel dizzy, nauseated, shaky… Actually, the best comparison would probably be that I felt as if I was highly inebriated or intoxicated each time I was exposed to just a bit of sun.
I could wash myself and walk a bit around the house on my own most days, but my partner needed to take care of all other tasks. He’s the one who took care of all the cooking at home (he prepared full meals for me in advance, that I only needed to heat in the microwave for lunch… Actually, he still does that! Lol!).
Like Kati was explaining, in January this year, I began receiving Xolair (Omalizumab) injections, 300mg every 4 weeks.
Xolair is an anti-IgE antibody from the monoclonal antibodies family (same family as Rituxan (Rituximab), Remicade (Infliximab), etc.). However, it seems that MCAS patients have been responding positively to it regardless of whether they had elevated IgE levels pre-treatment or not! So the exact reason why it seems effective with some MCAS patients when MCAS itself (except secondary MCAS) is not supposed to be IgE dependant is not quite well understood.
It is given subcutaneously by nurses (you can't bring the medication back home and give it to yourself, or have a family member do it for you), in a medical clinic where there is at least one doctor present in case of an adverse reaction. For the first 3 injections, you must remain under supervision for 2 hours following the injection in order to make sure it is well tolerated.
But, afterwards, the appointments take roughly 15 minutes, since you can leave right after receiving it.
It can also take a few doses (3 to 4) before you start noticing its effect. Personally, the medication really started to make an important difference for me after the 3rd injection in March.
A small correction to Kati’s initial post: I am not the one who suffered from headaches as a side effect of the medication, but a few other MCAS patients I had the chance to speak with.
I do feel SLIGHTLY more tired on the day I receive the injections, but otherwise I’m perfectly fine! Xolair is extremely well tolerated in my case.
My doctor initially wished for me to receive 375mg every 2 weeks, but my insurance company refused. He’s now trying to push for 450mg every 4 weeks, with the hopes of being able to increase the dose to 600mg every 4 weeks. But there again, my insurance company has been pretty firm on the fact that they will only agree to pay for 300mg every 4 weeks.
In Canada, Xolair is only recognized for two clinical applications: allergic asthma and urticaria.
Thankfully, I do have urticaria, so he’s allowed to prescribe it. But the maximum dose officially recognized by Health Canada in order to treat urticaria here is 300mg every 4 weeks, so my insurance company won’t accept to cover for anything more than that (at least, thus far).
Still, given the current results, I do feel rather fortunate to be able to receive it at all!
Because I have been responding rather amazingly well to that treatment (in my humble opinion! Lol!).
Last Friday, for example, I was able to walk 0.5 mile (800m) from my home to a local restaurant to enjoy a wonderful meal outside in the sun on the terrace with my boyfriend! I was able to drink a nice glass of wine, too, without any issues!
My legs were aching (but I believe it is more from lack of use over those 7 years), but the fatigue I felt when getting there (and later coming back home) was overall “normal”, I think, and not accompanied by any other specific discomfort.
From what I can tell, it was just the overall feeling of having provided a significant physical effort that my body is no longer quite used to provide, that was then relieved by sitting down and enjoying our meal.
I was also able to start reintroducing a few foods (even those that cause true allergic reactions as opposed to an intolerance) in my diet. Alcohol (in very small quantities), chocolate, poultry, SOY (One of the most annoying allergies to have! There’s soy virtually everywhere! You can’t escape it!)… All things I can safely eat again!
The foods I’m most allergic to will be reintroduced a little later, once (or if) I’ve continued to improve.
And later today, I plan on going to have lunch at the food court of our local mall, and doing a tiny bit of shopping.
I’m still highly deconditioned, and have good bouts of brain fog every now and then, but it’s much less severe than it used to be!
I can try to slowly push back my limits without fear of “crashing” the next day (or the day after) and making my illness worse!
If I’ve been pushing myself too hard, a day or two of “taking it easy” will be enough to make me return to my previous level of functioning.
Please note that not all the people I’ve spoken with (on a MCAS forum on Facebook) had positive results with Xolair. Like most medications, having a matching diagnosis does not guarantee that two patients will respond the exact same way to treatment.
But I still wanted to share my own experience so that you guys know that this treatment option exists (and is occasionally used for MCAS patients) somewhere out there!
Not sure if I should put disclaimers, but beyond being a patient that receives the treatment I have no personal affiliations with the company that produces Xolair. Lol! I've just been extremely lucky that it's been helping me get parts of my life back thus far...
I chose to start another thread so it could be put in the Mast Cell Disorders/Mastocytosis section – since I’m giving more information regarding what MCAS can look like, at least in my case, and not just addressing my specific treatment! I hope you guys don’t mind!
Basically, I was diagnosed with ME/CFS and fibromyalgia back in 2009.
However, in late 2015, I was seen by an internist in clinical immunology and allergology here in Montreal who (following a few tests, his clinical observations, the description of my symptoms and list of usual triggers, seeing a few pictures of skin lesions I’d brought him, as well as my current response to treatment) finally diagnosed me with Mast Cell Activation Syndrome (MCAS) in April this year.
I also have multiple associated environmental and food allergies (so I had very elevated IgE antibody levels on top of MCAS), and am allergic to Benadryl (Diphenhydramine), Aspirin (ASA), and Dilaudid (Hydromorphone).
As a child, I used to suffer from asthma and recurrent pneumonia (last crisis was when I was 12 y.o.), but didn’t suffer from any known allergies. Then, I developed eczema, an allergy to cats, and a pollen-food (or oral allergy) syndrome later in my teens.
Things remained fairly stable until 2004, a little before I turned 23, when I had a bout of shingles.
From there, I started suffering from recurrent URTI, fatigue, headaches, night terrors…
Then, in 2006, now aged 25, I had a mononucleosis. I did partially recover and was able to return to work, but I kept falling ill on and off with either URTI or a few mysterious, unspecified, “viral infections” (at least, that’s how the doctors diagnosed them. Basically, it just looked like I’d caught “some bug”, but they had no clue which one. Lol!).
I also began experiencing more and more health issues, such as:
- Crushing and persisting fatigue with post-exertional malaise and muscle weakness;
- Sleep disorders (sleep paralysis with lucid hypgnogogic and hypnapagogic hallucinations, idiopathic hypersomnia with morning drunkenness...);
- Skin lesions that came and went (little tender nodes on both ankles, small itching and bald patches on my scalp, red plaques on my chest when I take a bath, “rosacea” on my cheeks, small ulcers in my nose, etc.);
- Lower body oedema;
- Stiffness and aches, especially in the joints (causing more discomfort than real pain though – a bit like when you have the flu);
- Dysphagia;
- Gastrointestinal issues (nausea, cramps, vomiting, diarrhea alternating with constipation, abdominal bloating…);
- Frequent earaches and sore throats (but with no other sign of upper respiratory tract infections);
- Headaches;
- Swollen glands;
- More severe dysmenorrhea;
- Tremors;
- Palpitations;
- Excessive sweating, especially at night;
- Hyperventilation;
- Vertigo;
- Strong working memory issues, inability to concentrate, intense « brain fog »;
- Nosebleeds;
- Rectal bleeding;
- Occasional tinnitus;
- Sensory overload phenomenon. Inability to tolerate intense and/or multiple stimuli: especially noise, movement, lights, vibrations (ex: of the car), etc.;
- Body temperature regulation issues (often feels too cold or too warm);
- Bluish / pales extremities (feet especially, hands can get pale, but not white nor bluish); that can later become warm and a little red;
- Gradual emergence of new multiple food and/or environmental allergies and intolerances;
- When tired, especially, I often felt like the skin of my face was on fire, and it was indeed very warm to the touch (as if I was running a fever), but it didn’t really “flush” per say (i.e. didn’t become red);
- And so forth!
My family doctor back then gave me a diagnosis of ME/CFS, and I was evaluated just a few months later with a rheumatologist who gave me a fibromyalgia diagnosis.
In March 2012, Dr. Byron Hyde took over my medical investigations.
In November the same year, I made a short trip to Ithaca College (New York) to be evaluated by Dr. Betsy Keller (2 days CPET test protocol developed by Stacy Stevens).
Like most people diagnosed with ME/CFS, the results were that I had a very low anaerobic threshold (2.1 METS, roughly the effort needed to wash your hands), and my VO2Max dropped from 6.2 METS to 5.7 METS if asked to perform the same effort at a 24 hours’ interval.
While this should have convinced me that I was, indeed, a ME/CFS patient, I still felt the need to continue digging (and thankfully, Dr. Hyde was all too happy to oblige! Lol!), because I really needed to do all I humanly could to understand why this was happening to me.
Other significant diagnosis I’ve received since 2009 (not already named) include:
- Attention deficit / hyperactivity disorder (ADHD), predominantly inattentive type*;
- Dysautonomia;
- Hyperinsulinism with insulin resistance;
- Irritable bowel syndrome;
- Dermographism.
*Note: I’ve had ADHD since I was a child, but it had simply never been diagnosed since I was a bit of an overachiever at school, and very quiet in class (the kind of kid that doesn’t listen to what the teacher is saying, is unable to prepare for an exam in advance, but will somehow manage to study the night right before the exam in a panic and still get the top grades of her class!). At home, my parents compensated for most of my deficits – my mother, especially, who was a bit overinvolved in every aspect of my life. Plus, I’d developed a few personal coping strategies that involved doing everything at the very last minute when under a good rush of stress and adrenaline to be able to focus on the task (needless to say that being a nurse is probably one of the very best jobs for someone with ADHD given the high level of accountability and stress!). Obviously, the sudden lack of high energy reserves took all those instinctive coping strategies away since I could no longer rely on my ability to do everything all at once like I used to. ADHD + pacing and planning things in advance, and then especially EXECUTING said planning, doesn’t quite match! Lol!
The MCAS diagnosis obviously came as a great relief (and explained so much!!!), and was a source of hope since my doctor assured me that, although MCAS can be very difficult to treat, a few of his patients did manage to reach a very decent level of recovery, and were able to reintroduce some of the activities they loved into their lives!
Before my current treatment, I was virtually homebound (except for when I needed to go out for medical appointments). Otherwise, I could manage going to the movie theater about 4 times a year on a really “good day”, and/or the occasional family dinner with my partner’s family (thankfully, they are EXTREMELY respectful and understanding towards my illness, made special meals that wouldn’t trigger my symptoms, and allowed me to go rest in a quiet bedroom for as long as I needed during and/or after any family event).
I usually stayed strictly inside the house with very opaque curtains, because direct and/or indirect sunlight is one of my very worst triggers (this, combined with some of my skin lesions, made us think that I might have lupus at some point. However, my adverse response to sunlight is systemic rather than cutaneous, and I didn’t meet enough criteria for the diagnosis). Sunlight made me feel dizzy, nauseated, shaky… Actually, the best comparison would probably be that I felt as if I was highly inebriated or intoxicated each time I was exposed to just a bit of sun.
I could wash myself and walk a bit around the house on my own most days, but my partner needed to take care of all other tasks. He’s the one who took care of all the cooking at home (he prepared full meals for me in advance, that I only needed to heat in the microwave for lunch… Actually, he still does that! Lol!).
Like Kati was explaining, in January this year, I began receiving Xolair (Omalizumab) injections, 300mg every 4 weeks.
Xolair is an anti-IgE antibody from the monoclonal antibodies family (same family as Rituxan (Rituximab), Remicade (Infliximab), etc.). However, it seems that MCAS patients have been responding positively to it regardless of whether they had elevated IgE levels pre-treatment or not! So the exact reason why it seems effective with some MCAS patients when MCAS itself (except secondary MCAS) is not supposed to be IgE dependant is not quite well understood.
It is given subcutaneously by nurses (you can't bring the medication back home and give it to yourself, or have a family member do it for you), in a medical clinic where there is at least one doctor present in case of an adverse reaction. For the first 3 injections, you must remain under supervision for 2 hours following the injection in order to make sure it is well tolerated.
But, afterwards, the appointments take roughly 15 minutes, since you can leave right after receiving it.
It can also take a few doses (3 to 4) before you start noticing its effect. Personally, the medication really started to make an important difference for me after the 3rd injection in March.
A small correction to Kati’s initial post: I am not the one who suffered from headaches as a side effect of the medication, but a few other MCAS patients I had the chance to speak with.
I do feel SLIGHTLY more tired on the day I receive the injections, but otherwise I’m perfectly fine! Xolair is extremely well tolerated in my case.
My doctor initially wished for me to receive 375mg every 2 weeks, but my insurance company refused. He’s now trying to push for 450mg every 4 weeks, with the hopes of being able to increase the dose to 600mg every 4 weeks. But there again, my insurance company has been pretty firm on the fact that they will only agree to pay for 300mg every 4 weeks.
In Canada, Xolair is only recognized for two clinical applications: allergic asthma and urticaria.
Thankfully, I do have urticaria, so he’s allowed to prescribe it. But the maximum dose officially recognized by Health Canada in order to treat urticaria here is 300mg every 4 weeks, so my insurance company won’t accept to cover for anything more than that (at least, thus far).
Still, given the current results, I do feel rather fortunate to be able to receive it at all!
Because I have been responding rather amazingly well to that treatment (in my humble opinion! Lol!).
Last Friday, for example, I was able to walk 0.5 mile (800m) from my home to a local restaurant to enjoy a wonderful meal outside in the sun on the terrace with my boyfriend! I was able to drink a nice glass of wine, too, without any issues!
My legs were aching (but I believe it is more from lack of use over those 7 years), but the fatigue I felt when getting there (and later coming back home) was overall “normal”, I think, and not accompanied by any other specific discomfort.
From what I can tell, it was just the overall feeling of having provided a significant physical effort that my body is no longer quite used to provide, that was then relieved by sitting down and enjoying our meal.
I was also able to start reintroducing a few foods (even those that cause true allergic reactions as opposed to an intolerance) in my diet. Alcohol (in very small quantities), chocolate, poultry, SOY (One of the most annoying allergies to have! There’s soy virtually everywhere! You can’t escape it!)… All things I can safely eat again!
The foods I’m most allergic to will be reintroduced a little later, once (or if) I’ve continued to improve.
And later today, I plan on going to have lunch at the food court of our local mall, and doing a tiny bit of shopping.
I’m still highly deconditioned, and have good bouts of brain fog every now and then, but it’s much less severe than it used to be!
I can try to slowly push back my limits without fear of “crashing” the next day (or the day after) and making my illness worse!
If I’ve been pushing myself too hard, a day or two of “taking it easy” will be enough to make me return to my previous level of functioning.
Please note that not all the people I’ve spoken with (on a MCAS forum on Facebook) had positive results with Xolair. Like most medications, having a matching diagnosis does not guarantee that two patients will respond the exact same way to treatment.
But I still wanted to share my own experience so that you guys know that this treatment option exists (and is occasionally used for MCAS patients) somewhere out there!
Not sure if I should put disclaimers, but beyond being a patient that receives the treatment I have no personal affiliations with the company that produces Xolair. Lol! I've just been extremely lucky that it's been helping me get parts of my life back thus far...
