TreasureVibe
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- Jul 3, 2016
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Hi all. I am kind of shocked and need your help. In my childhood I have suffered from Systemic-onset Juvenile idiopathic arthritis. This is also known as Still's Disease. All of my life my parents vaguely told me I had "rheuma" which is short for basically rheumatoid arthritis. When I asked them what it exactly was they always told me it was a disease of the joints getting inflamed. I received methotrexate injections as a child for this disease, till the age of 12. My parents also always vaguely referred that what I have is Still's Disease.
Now, as I am 23, I finally decided to read on Wikipedia what exactly is Still's Disease and I am shocked that it is a rare genetic-like autoimmune disorder, which apparently according to the description is much more than just inflammation of the joints. See the following description from Wikipedia:
Systemic-onset juvenile idiopathic arthritis
Systemic-onset juvenile idiopathic arthritis (also known as systemic juvenile idiopathic arthritis (sJIA) or the juvenile onset form of Still's disease[1]) is a type of juvenile idiopathic arthritis (JIA) with extra-articular manifestations like fever and rash apart from arthritis. It was originally called systemic-onset juvenile rheumatoid arthritis or Still's disease.
Predominantly extra-articular manifestations like high fevers, rheumatic rash, enlargement of the liver and spleen, enlargement of the lymph nodes, and anemia. Others manifestations include inflammation of the pleura, inflammation of the pericardium, inflammation of the heart's muscular tissue, and inflammation of the peritoneum are also seen.[citation needed]
It is sometimes called "juvenile-onset Still's disease", to distinguish it from adult-onset Still's disease. However, there is some evidence that the two conditions are closely related.[2]
Presentation
Systemic JIA is characterized by arthritis, fever, which typically is higher than the low-grade fever associated with polyarticular and a salmon pink rash. It accounts for 10-20% of JIA and affects males and females equally, unlike the other two subtypes of JIA, and affects adolescents. It generally involves both large and small joints. Systemic JIA can be challenging to diagnose because the fever and rash come and go. Fever can occur at the same time every day or twice a day (often in late afternoon or evening) with a spontaneous rapid return to baseline (vs. septic arthritis of continuous fever). The rash often occurs with fever. It is a discrete, salmon-pink macules of different sizes. It migrates to different locations on skin, rarely persisting in one location more than one hour. The rash is commonly seen on trunk and proximal extremities or over pressure areas.
Arthritis is often absent in the first weeks or even 6–8 months into the illness.
Systemic JIA may have internal organ involvement such as hepatosplenomegaly, lymphadenopathy, serositis, hepatitis, or tenosynovitis.[citation needed]
A polymorphism in macrophage migration inhibitory factor has been associated with this condition.[3]
Cause
The cause is unknown but it's thought to be related to environmental, genetic, and hormonal factors.
- I've had the salmon-pink rash as a child which my doctors also described, looked for and saw!
Adult-onset Still's disease
Specialty Rheumatology
Adult-onset Still's disease (AOSD) is a form of Still's disease, a rare systemic autoinflammatory disease characterized by the classic triad of persistent high spiking fevers, joint pain, and a distinctive salmon-colored bumpy rash. The disease is considered a diagnosis of exclusion.[1] Levels of the iron-binding protein ferritin may be elevated with this disorder. AOSD may present in a similar manner to other inflammatory diseases and to autoimmune diseases, which must be ruled out before making the diagnosis.
Prognosis is usually favorable but manifestations of the disease affecting the lungs, heart, or kidneys may occasionally cause severe life-threatening complications.[2] It is treated first with steroids such as prednisone. Drugs that block the action of interleukin-1, such as anakinra, can be effective treatments when standard steroid treatments are insufficient.[3]
Sources:
Systemic-onset juvenile idiopathic arthritis - Wikipedia
Adult-onset Still's disease - Wikipedia
I am shocked to see that this is a very dangerous and rare systemic autoinflammatory/autoimmune disorder and some of the symptoms and presentations described like inflammation of the pleura is something I have experienced too and even experience today!
I really want to become healthy from this disease and I plan on e-mailing Dr. Ray Peat too to ask what he knows about this disease.
Does any of you know anything about this disease and what can be done and used, (supplements etc) to help it, perhaps in Peat style?
Now that I know this, I am making an appointment with a rheumatologist ASAP!
If only I've had known earlier..
Thanks alot!
CC: @haidut
I also found this:
Increased IL-1β signaling also underlies a group of autoinflammatory syndromes, many of which respond clinically to IL-1β blockade.(37, 38) These include monogenic conditions such as cryopyrin associated periodic syndrome, as well as genetically complex diseases such as systemic juvenile idiopathic rheumatoid arthritis and Still's disease.
In this topic: https://raypeatforum.com/community/...in-antagonists-and-anti-inflammatories.20984/
From this study: Selective modulation of autophagy, innate immunity and adaptive immunity by small molecules
A good information source: http://www.stillsdisease.org/index.php/treatment/
I think Methylene Blue can help since according to the sources above, Anakinra is successful in treating symptoms in alot of Still's disease patients.
Source: https://raypeatforum.com/community/...ry-with-possibly-the-broadest-spectrum.22156/
Maybe this article could explain why IP6, an iron chelator, made me feel so good!
The Hyperferritinemic Syndrome: macrophage activation syndrome, Still’s disease, septic shock and catastrophic antiphospholipid syndrome
Still's disease is also described as a ''polygenic autoinflammatory disorder'' what would a Peat take on that be?
The complex pathophysiology of polygenic or multifactorial autoinflammatory diseases
Examples of polygenic or multifactorial autoinflammatory diseases in addition to PFAPA are chronic nonbacterial osteomyelitis, systemic‐onset juvenile idiopathic arthritis and adult onset Still's disease.
Review of autoinflammatory diseases, with a special focus on periodic fever, aphthous stomatitis, pharyngitis and cervical adenitis syndrome
Adult onset Still’s disease (AOSD)
AOSD is a systemic inflammatory disorder with unknown etiology, but it is hypothesized that it may be a reactive syndrome where various infectious agents may act as disease triggers in a genetically predisposed host [65].
Heightened soluble IL-2 receptor levels, a marker of T cell activation, were also reported in two distinct studies of AOSD patients, serving as a potential marker of disease activity [66, 67]. Furthermore, reactive hemophagocytic syndrome is not uncommon in AOSD [3, 40]. Recent studies revealed a pivotal role of several pro-inflammatory cytokines on AOSD, such as IL-1, IL-6, IL-8, TNF-α and IL-18 in disease pathogenesis. There are controversial statements concerning the importance of IL-18 in distinguishing AOSD from other diagnoses [68, 69]. NK T cells are numerically and functionally deficient in AOSD, similar to those observed in SLE, RA and MAS [60].
https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-185
Also thinking of using Artemisinin/Wormwood/Artemisia.
I have a deficiency in Natural Killer T-cells, what is the best Peat method and Peat supplements to raise this?
Now, as I am 23, I finally decided to read on Wikipedia what exactly is Still's Disease and I am shocked that it is a rare genetic-like autoimmune disorder, which apparently according to the description is much more than just inflammation of the joints. See the following description from Wikipedia:
Systemic-onset juvenile idiopathic arthritis
Systemic-onset juvenile idiopathic arthritis (also known as systemic juvenile idiopathic arthritis (sJIA) or the juvenile onset form of Still's disease[1]) is a type of juvenile idiopathic arthritis (JIA) with extra-articular manifestations like fever and rash apart from arthritis. It was originally called systemic-onset juvenile rheumatoid arthritis or Still's disease.
Predominantly extra-articular manifestations like high fevers, rheumatic rash, enlargement of the liver and spleen, enlargement of the lymph nodes, and anemia. Others manifestations include inflammation of the pleura, inflammation of the pericardium, inflammation of the heart's muscular tissue, and inflammation of the peritoneum are also seen.[citation needed]
It is sometimes called "juvenile-onset Still's disease", to distinguish it from adult-onset Still's disease. However, there is some evidence that the two conditions are closely related.[2]
Presentation
Systemic JIA is characterized by arthritis, fever, which typically is higher than the low-grade fever associated with polyarticular and a salmon pink rash. It accounts for 10-20% of JIA and affects males and females equally, unlike the other two subtypes of JIA, and affects adolescents. It generally involves both large and small joints. Systemic JIA can be challenging to diagnose because the fever and rash come and go. Fever can occur at the same time every day or twice a day (often in late afternoon or evening) with a spontaneous rapid return to baseline (vs. septic arthritis of continuous fever). The rash often occurs with fever. It is a discrete, salmon-pink macules of different sizes. It migrates to different locations on skin, rarely persisting in one location more than one hour. The rash is commonly seen on trunk and proximal extremities or over pressure areas.
Arthritis is often absent in the first weeks or even 6–8 months into the illness.
Systemic JIA may have internal organ involvement such as hepatosplenomegaly, lymphadenopathy, serositis, hepatitis, or tenosynovitis.[citation needed]
A polymorphism in macrophage migration inhibitory factor has been associated with this condition.[3]
Cause
The cause is unknown but it's thought to be related to environmental, genetic, and hormonal factors.
- I've had the salmon-pink rash as a child which my doctors also described, looked for and saw!
Adult-onset Still's disease
Specialty Rheumatology
Adult-onset Still's disease (AOSD) is a form of Still's disease, a rare systemic autoinflammatory disease characterized by the classic triad of persistent high spiking fevers, joint pain, and a distinctive salmon-colored bumpy rash. The disease is considered a diagnosis of exclusion.[1] Levels of the iron-binding protein ferritin may be elevated with this disorder. AOSD may present in a similar manner to other inflammatory diseases and to autoimmune diseases, which must be ruled out before making the diagnosis.
Prognosis is usually favorable but manifestations of the disease affecting the lungs, heart, or kidneys may occasionally cause severe life-threatening complications.[2] It is treated first with steroids such as prednisone. Drugs that block the action of interleukin-1, such as anakinra, can be effective treatments when standard steroid treatments are insufficient.[3]
Sources:
Systemic-onset juvenile idiopathic arthritis - Wikipedia
Adult-onset Still's disease - Wikipedia
I am shocked to see that this is a very dangerous and rare systemic autoinflammatory/autoimmune disorder and some of the symptoms and presentations described like inflammation of the pleura is something I have experienced too and even experience today!
I really want to become healthy from this disease and I plan on e-mailing Dr. Ray Peat too to ask what he knows about this disease.
Does any of you know anything about this disease and what can be done and used, (supplements etc) to help it, perhaps in Peat style?
Now that I know this, I am making an appointment with a rheumatologist ASAP!
If only I've had known earlier..
Thanks alot!
CC: @haidut
I also found this:
Increased IL-1β signaling also underlies a group of autoinflammatory syndromes, many of which respond clinically to IL-1β blockade.(37, 38) These include monogenic conditions such as cryopyrin associated periodic syndrome, as well as genetically complex diseases such as systemic juvenile idiopathic rheumatoid arthritis and Still's disease.
In this topic: https://raypeatforum.com/community/...in-antagonists-and-anti-inflammatories.20984/
From this study: Selective modulation of autophagy, innate immunity and adaptive immunity by small molecules
A good information source: http://www.stillsdisease.org/index.php/treatment/
I think Methylene Blue can help since according to the sources above, Anakinra is successful in treating symptoms in alot of Still's disease patients.
"...Inflammasome dysregulation has been implicated in neurologic disorders and metabolic diseases, neither of which are traditionally considered to be inflammatory diseases but which are increasingly recognized as having an inflammatory component that significantly contributes to the disease process and drives many forms of cancer in humans5 . Therefore, researchers have become interested in the regulation of inflammasome activation. So far, several reagents such as recombinant IL-1 receptor antagonist (anakinra), neutralizing IL-1β antibody (canakinumab), soluble decoy IL-1 receptor (rilonacept), IL-18–binding protein, soluble IL-18 receptors, and anti–IL-18 receptor monoclonal antibodies have been developed and applied to control inflammasome-mediated diseases5 . These reagents only control events downstream of inflammasome activation such as blockage of IL-1β/-18 signaling. However, we have attempted to screen natural compounds that selectively control events upstream of inflammasome activation32–38. Based on our finding, MB has the most wide range of anti-inflammasome agents and controls several events upstream of inflammasome activation. Specifically, MB blocks the NLRP3, NLRC4, and AIM2 inflammasomes as well as non-canonical inflammasome. In addition, MB attenuates crystal phagocytosis, the priming step of inflammasome activation, Asc speck formation, and caspse-1 activation."
Source: https://raypeatforum.com/community/...ry-with-possibly-the-broadest-spectrum.22156/
Maybe this article could explain why IP6, an iron chelator, made me feel so good!
The Hyperferritinemic Syndrome: macrophage activation syndrome, Still’s disease, septic shock and catastrophic antiphospholipid syndrome
Still's disease is also described as a ''polygenic autoinflammatory disorder'' what would a Peat take on that be?
The complex pathophysiology of polygenic or multifactorial autoinflammatory diseases
Examples of polygenic or multifactorial autoinflammatory diseases in addition to PFAPA are chronic nonbacterial osteomyelitis, systemic‐onset juvenile idiopathic arthritis and adult onset Still's disease.
Review of autoinflammatory diseases, with a special focus on periodic fever, aphthous stomatitis, pharyngitis and cervical adenitis syndrome
Adult onset Still’s disease (AOSD)
AOSD is a systemic inflammatory disorder with unknown etiology, but it is hypothesized that it may be a reactive syndrome where various infectious agents may act as disease triggers in a genetically predisposed host [65].
Heightened soluble IL-2 receptor levels, a marker of T cell activation, were also reported in two distinct studies of AOSD patients, serving as a potential marker of disease activity [66, 67]. Furthermore, reactive hemophagocytic syndrome is not uncommon in AOSD [3, 40]. Recent studies revealed a pivotal role of several pro-inflammatory cytokines on AOSD, such as IL-1, IL-6, IL-8, TNF-α and IL-18 in disease pathogenesis. There are controversial statements concerning the importance of IL-18 in distinguishing AOSD from other diagnoses [68, 69]. NK T cells are numerically and functionally deficient in AOSD, similar to those observed in SLE, RA and MAS [60].
https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-185
Also thinking of using Artemisinin/Wormwood/Artemisia.
I have a deficiency in Natural Killer T-cells, what is the best Peat method and Peat supplements to raise this?
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