Health Boards
Tue-24-07-2018, 18:02 PM
Hi, I'm Moxie. I've just joined, in part, to contribute and to document my oh-so-fresh Cosentyx "journey"
Background: Diagnosed at age 18 with psoriasis; age 36 for PsA;
I also have Autoimmune Metaplastic Atrophic Gastritis (AMAG) and related Pernicious Anemia (PA), as well as Iron Deficiency Anemia (IDA) of Chronic Disease (as well as from monthly blood loss on account of having autoimmune related endometriosis)
A recent test that revealed I have a heterozygous MTHFR genetic polymorphism, lending evidence to my observations that I do not absorb nutrients properly from food or supplements, which makes sense, considering that I have AMAG, which means that the stomach does not manufacture enough acid to properly break down food, among other things, such as antibodies to the parietal cells, which are vital to conversion of intrinsic factor/B12
In addition to those awesome things, I have a weird form of either IBD or Crohn's that mainly affects the jejunem (which, incidentally, cannot be gotten to by endo/colon scopes) and the presentation is atypical. Recent endoscope showed lesions on my duodenum, basically, in layman's terms: my entire digestive tract is inflamed. This is pretty typical of Psoriatic Disease, from what I understand.
I also have Hashimoto's, Ankylosing Spondylitis, and some other stuff but I'm already boring myself.
I'm Native American & European (German) from my mother's side, her parents are both first Generation of their ethnicity/region. The Native side of my family is not afflicted by the autoimmune disease, but the German side, i.e., my grandmother and my more genetically European aunt & her children, as well as one of my brothers - the one who favours the Euro-side - is absolutely plagued by it. At last count, there were 20-something separate AI disorders between 6 of us. I am the only one with Psoriatic Disease, though the others have a form of arthritis that resembles the Rheumatoid variety.
When tested, I am RF negative, typically have a high ANA titer, which is speckled and homogenous, as well as positive Anti-DS dna. I think it's fascinating that I have literal antibodies to my own DNA and consider the genetic links as well as epigenetic, psychosocial and environmental factors which have all have led up to this.
Strangely, I rarely have a very high CRP or SED rate, even though I suffer tremendously from the inflammation of my enthesis (where your tendons/ligaments attach to bones - like the achilles tendon, for instance), joints, bursa, skin and other different organ systems. When untreated with prednisone or biologic drugs, I typically run a fever all the time and feel tired and emotionally labile. It's not very fun to be inflamed and there is definitely a brain fog which accompanies all this, unsurprisingly.
I have been researching my disease for a long time and experimenting on myself through diet and observations. I would have never lived this long, had I not been triaging myself to doctors during the many crises or requesting specific bloodwork, etc. It has helped me to become extremely nerdy, impatient with doctors who are not up on the current research or open to the myriad factors affecting AI disease, and fairly isolated, as I also seem to register fairly high on the Asperger's scale.
I was untreated and reliant upon diet and lifestyle, and -of course- self-blame and denial for decades. I suffered, ignored, periodically binged on alchohol, and listened to U.S. doctors who told me I was mentally ill, drug seeking, etc. That was traumatic. Finally, 6 years ago, I immigrated to Canada and gained access to uninterrupted health care after becoming a resident. What a difference that has made. I see 7 different specialists and spent one year in a multi-modality rehab centre which focused on my arthritis, addressing every aspect of my life, methodically and with purpose. I put myself through 3 years of intensive psychological therapy with trauma specialists who used CBT and EMDR, among other approaches. Every step of the way, I think I have believed that if only I worked harder on myself, had a cleaner diet, had a clearer conscience, was more lovable or meditative or whatever, that this illness wouldn't be happening. Yet, as it's said to do, it has progressed. Despite my efforts to address my Being and so-called mortal error. My executive function has taken a real hit from all the things, that's maybe the most difficult thing of all to endure - knowing that you're simply not capable of high-level functioning, either physically, mentally or energetically. What a shit show!
In 2014, I began treatment with Stelara. It worked like a dream for about 18 months with standard side-effects. Then, poof. Nothing. Developed antibodies.
In 2017, I began treatment with Humira. It worked even better than Stelara, with fewer side-effects, except notable exhaustion. Then, again. Poof! Antibodies. I was only on the drug for about 8 months.
I take a lot of ibuprofen to resemble anything close to functional and Ativan to sleep at night because these diseases are HELL on sleep, which I simply can't tolerate anymore. I eat a (mostly) gluten free, healthy diet and use a vitamix to make smoothies. I take vitamins and probiotics (bifidobacterium longum) as well as prebiotic inulin in the form of Jerusalem Artichoke powder. I inject myself with intramuscular B12 shots regularly.
YESTERDAY, I had my first 300mg loading dose of Cosentyx. I chose the auto-injector pins. It burned slightly less than Humira, though, curiously, I had an allergic skin reaction to the bandaid/adhesive which made the area around the injection sites itch a great deal. Since I was already in an inflammatory crisis, after weaning myself off the prednisone I'd been taking for the last 6 months, off and on, it's hard to say whether I'm having any reaction to it today. I mean, I already feel like hell, LOL! It does seem to cause diarrhea, though, that would be a certainty, as I am not prone to that particular malady except under odd circumstances. Maybe a slight headache.
I took some photos today to document where I am with my skin and visibly affected joints and will try to figure out how to post them. My skin actually looks pretty great, despite the coverage, because I recently spent some time at the beach and try to take the sun every morning with my coffee, practically naked on the terrace, as sun is extremely beneficial for me... because Vitamin D is a master hormone?
Anyway, that's me. I'm Moxie.
This disease has been running my life for over 2 decades. I am the mama of 2 (mostly) healthy (mostly unvaccinated - one nearly died from a series of them at 15 months and she has always shown signs of susceptibility to AI disease) teenagers, a writer and script editor, as well as a former hula hoop artist, circus arts performer and amateur yogini. I am from Louisiana originally; my kids and I relocated from Austin to Montreal, where we are definitely seen as odd ducks, in the greatest sense, of course.
I wear shorts and short sleeves now because I am beautiful, even if the Prednisone has made me fat! To hell with the nasty social/disease mentality that told me I was broken and ugly for too long!
Background: Diagnosed at age 18 with psoriasis; age 36 for PsA;
I also have Autoimmune Metaplastic Atrophic Gastritis (AMAG) and related Pernicious Anemia (PA), as well as Iron Deficiency Anemia (IDA) of Chronic Disease (as well as from monthly blood loss on account of having autoimmune related endometriosis)
A recent test that revealed I have a heterozygous MTHFR genetic polymorphism, lending evidence to my observations that I do not absorb nutrients properly from food or supplements, which makes sense, considering that I have AMAG, which means that the stomach does not manufacture enough acid to properly break down food, among other things, such as antibodies to the parietal cells, which are vital to conversion of intrinsic factor/B12
In addition to those awesome things, I have a weird form of either IBD or Crohn's that mainly affects the jejunem (which, incidentally, cannot be gotten to by endo/colon scopes) and the presentation is atypical. Recent endoscope showed lesions on my duodenum, basically, in layman's terms: my entire digestive tract is inflamed. This is pretty typical of Psoriatic Disease, from what I understand.
I also have Hashimoto's, Ankylosing Spondylitis, and some other stuff but I'm already boring myself.
I'm Native American & European (German) from my mother's side, her parents are both first Generation of their ethnicity/region. The Native side of my family is not afflicted by the autoimmune disease, but the German side, i.e., my grandmother and my more genetically European aunt & her children, as well as one of my brothers - the one who favours the Euro-side - is absolutely plagued by it. At last count, there were 20-something separate AI disorders between 6 of us. I am the only one with Psoriatic Disease, though the others have a form of arthritis that resembles the Rheumatoid variety.
When tested, I am RF negative, typically have a high ANA titer, which is speckled and homogenous, as well as positive Anti-DS dna. I think it's fascinating that I have literal antibodies to my own DNA and consider the genetic links as well as epigenetic, psychosocial and environmental factors which have all have led up to this.
Strangely, I rarely have a very high CRP or SED rate, even though I suffer tremendously from the inflammation of my enthesis (where your tendons/ligaments attach to bones - like the achilles tendon, for instance), joints, bursa, skin and other different organ systems. When untreated with prednisone or biologic drugs, I typically run a fever all the time and feel tired and emotionally labile. It's not very fun to be inflamed and there is definitely a brain fog which accompanies all this, unsurprisingly.
I have been researching my disease for a long time and experimenting on myself through diet and observations. I would have never lived this long, had I not been triaging myself to doctors during the many crises or requesting specific bloodwork, etc. It has helped me to become extremely nerdy, impatient with doctors who are not up on the current research or open to the myriad factors affecting AI disease, and fairly isolated, as I also seem to register fairly high on the Asperger's scale.
I was untreated and reliant upon diet and lifestyle, and -of course- self-blame and denial for decades. I suffered, ignored, periodically binged on alchohol, and listened to U.S. doctors who told me I was mentally ill, drug seeking, etc. That was traumatic. Finally, 6 years ago, I immigrated to Canada and gained access to uninterrupted health care after becoming a resident. What a difference that has made. I see 7 different specialists and spent one year in a multi-modality rehab centre which focused on my arthritis, addressing every aspect of my life, methodically and with purpose. I put myself through 3 years of intensive psychological therapy with trauma specialists who used CBT and EMDR, among other approaches. Every step of the way, I think I have believed that if only I worked harder on myself, had a cleaner diet, had a clearer conscience, was more lovable or meditative or whatever, that this illness wouldn't be happening. Yet, as it's said to do, it has progressed. Despite my efforts to address my Being and so-called mortal error. My executive function has taken a real hit from all the things, that's maybe the most difficult thing of all to endure - knowing that you're simply not capable of high-level functioning, either physically, mentally or energetically. What a shit show!
In 2014, I began treatment with Stelara. It worked like a dream for about 18 months with standard side-effects. Then, poof. Nothing. Developed antibodies.
In 2017, I began treatment with Humira. It worked even better than Stelara, with fewer side-effects, except notable exhaustion. Then, again. Poof! Antibodies. I was only on the drug for about 8 months.
I take a lot of ibuprofen to resemble anything close to functional and Ativan to sleep at night because these diseases are HELL on sleep, which I simply can't tolerate anymore. I eat a (mostly) gluten free, healthy diet and use a vitamix to make smoothies. I take vitamins and probiotics (bifidobacterium longum) as well as prebiotic inulin in the form of Jerusalem Artichoke powder. I inject myself with intramuscular B12 shots regularly.
YESTERDAY, I had my first 300mg loading dose of Cosentyx. I chose the auto-injector pins. It burned slightly less than Humira, though, curiously, I had an allergic skin reaction to the bandaid/adhesive which made the area around the injection sites itch a great deal. Since I was already in an inflammatory crisis, after weaning myself off the prednisone I'd been taking for the last 6 months, off and on, it's hard to say whether I'm having any reaction to it today. I mean, I already feel like hell, LOL! It does seem to cause diarrhea, though, that would be a certainty, as I am not prone to that particular malady except under odd circumstances. Maybe a slight headache.
I took some photos today to document where I am with my skin and visibly affected joints and will try to figure out how to post them. My skin actually looks pretty great, despite the coverage, because I recently spent some time at the beach and try to take the sun every morning with my coffee, practically naked on the terrace, as sun is extremely beneficial for me... because Vitamin D is a master hormone?
Anyway, that's me. I'm Moxie.
This disease has been running my life for over 2 decades. I am the mama of 2 (mostly) healthy (mostly unvaccinated - one nearly died from a series of them at 15 months and she has always shown signs of susceptibility to AI disease) teenagers, a writer and script editor, as well as a former hula hoop artist, circus arts performer and amateur yogini. I am from Louisiana originally; my kids and I relocated from Austin to Montreal, where we are definitely seen as odd ducks, in the greatest sense, of course. I wear shorts and short sleeves now because I am beautiful, even if the Prednisone has made me fat! To hell with the nasty social/disease mentality that told me I was broken and ugly for too long!
to Psoriasis Club. 
who knows there is so much research at the moment that it's hopefully just a matter of time before a universal effective treatment is found 