I Am Shocked, Need Help On Systemic-onset Juvenile Idiopathic Arthritis Aka Still's Disease

[TreasureVibe]

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.

"...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?

 

[tara]

Idiopathic I think means they don't know what causes it - it's just a name for a collection of symptoms. And in this case those symptoms involve the immune system and a lot of inflammation.

I don't know a lot about either of these.
I do assume that whatever the specifics, healing - rebuilding well-functioning structures - generally requires basic needs to met, including nutrition, sunlight, breathing, meaningful connections with other living beings, preferably humans, etc, and paying attention to how particular things affect you personally.

In this situation, I'm guessing finding safe measures to address inflammation would also be important.
Identifying and avoiding things you personally are allergic or intolerant to may make a difference in systemic inflammation.

If you post your diet somewhere, I expect you would get more ideas. Have you tried using cronometer or similar? Some people post screen shots.

 

[TreasureVibe]

Idiopathic I think means they don't know what causes it - it's just a name for a collection of symptoms. And in this case those symptoms involve the immune system and a lot of inflammation.

I don't know a lot about either of these.
I do assume that whatever the specifics, healing - rebuilding well-functioning structures - generally requires basic needs to met, including nutrition, sunlight, breathing, meaningful connections with other living beings, preferably humans, etc, and paying attention to how particular things affect you personally.

In this situation, I'm guessing finding safe measures to address inflammation would also be important.
Identifying and avoiding things you personally are allergic or intolerant to may make a difference in systemic inflammation.

If you post your diet somewhere, I expect you would get more ideas. Have you tried using cronometer or similar? Some people post screen shots.

What are good anti-inflammatory herbs/supplements in a disease like this? I think it has to do with pathogens in the body/blood also activating the disease. Also a deficiency of natural killer T-cells is what I have, what could help boost those? I need immune boosting supplements I think.

Thnx!!

Edit: Also found this:

Hopefully you Hveragerthi ore someone here can help. My friends daughter Lisa has Juvenile Idiopathic Arthritis JIA and is only six years old. She has been operated several times, have to eat a lot of medicine like cortisone, Losec etc and is getting worse not only with the inflammation but also in blood values. She has also had a hart problem and has been operated for that to.

This is very common for autoimmune diseases to get worse with pharmaceutical treatment. The problem stems from the misguided belief that autoimmune disorders result from an overactive immune system. So they give immune suppressing drugs to basically wipe out the immune system. Problem is that autoimmune disorders result in large part from an UNDERACTIVE component of the immune system.

I underlined "component" for an emphasis because the immune system is not a singular thing. Instead it is a compilation of things such as various white blood cells, various cytokine, peroxides, the thymus, adrenals, lymphatic system, acids, beneficial bacteria, etc. In autoimmune disorders the adrenals are not working properly and the loss of immune modulating corticosteroids leads to an over production of low affinity (nonspecific) antibodies. See http://mountainmistbotanicals.com/info/Auto_Immunity.htm for a more detailed explanation. The rest of the immune system is doing its job just like it is designed to do. So there really is NO overactivity of the immune system.

Secondly, most autoimmune disorders have been linked to pathogens, usually bacteria and viruses. The underactivity of the immune system allows these pathogens to take hold. Therefore, taking immune suppressants like steroids, methotrexate, cyclosporin, etc. simply aggravate the condition by further suppressing the adrenals and by allowing the triggering pathogens to take hold even more. In addition, the suppression of the adrenal glands increases inflammation in the body due to the lowered level of anti-inflammatory adrenal steroids.

To make matters worse they have her on Losec, which is a proton pump inhibitor. Basically this is going to inhibit the release of stomach acid, which opens up a whole new set of problems. Among these are inhibiting the absorption of essential nutrients including those that play a role in inflammation reduction, and increased immune reactions from the undigested proteins that can now enter the blood stream. This puts even more stress on the adrenals. Here is an old post on the benefits of stomach acid:

http://curezone.org/forums/fm.asp?i=1581539#i

I´m just trying to help out the only way I know - by finding the right food and avoiding the wrong. After reading it seems like it sometimes can be a connection between Coeliac disease and JIA and that she should avoid gluten, glutamate etc. What do you say about that?

I think people are reading way too much in to that. To start with true Celiac is an inherited disorder. It is not the same thing as a gluten intolerance or allergies. Gluten intolerances are autoimmune though, but this does not make it a factor for rheumatoid arthritis. Instead it is not that uncommon for a person with one autoimmune disorder to develop other autoimmune disorders, especially when the immune system and adrenal function are being further suppressed by the treatments. And some of the pathogens that help trigger the autoimmune disorders have been implicated in other autoimmune disorders. For example, Chlamydia pneumoniae has been implicated in both rheumatoid arthritis and Crohn's disease, both autoimmune disorders. Clostridium has been linked as a potential trigger for gluten sensitivities, autoimmune hemolytic anemia and Reiter's syndrome.

Food that can triggers an inflammatory reaction should be avoided of course and I have recommended them to make an inolerence test like IMUPRO300 to start with but they have to wait until after her next operation because she is on so much medication. In my own book the most common triggers for pain is after gluten milk and dairy products, red meat and night shades vegetables. What more should she avoid - sugar, processed food, tap water ???

In general those would be good suggestions. But as long as she is on drugs suppressing her stomach acid and her adrenals the inflammation is going to keep going up. And there are things that can help with the inflammation naturally such as fish oil, but without knowing what drugs she is on it is hard to make recommendations. Primarily the problem is that you said she had heart surgery. Depending on what they did this means she could be on anything from blood thinners like Warfarin (coumadin) to immune suppressants like cyclosporin, both of which can have serious adverse reactions with herbs, supplements and even many foods.

And then - how can a six year old get rid of the toxin that probarbly is in her system and how can she improve her immunesystem?

My last statement applies here as well.

Please help -my friend is getting desperate because all she gets from the doctors here in Sweden is more medicine. Maybe there is a place they can go for treatment?

I don't know of any places off hand, especially ones that understand the concept of autoimmunity being a problem of immune suppression, not overactive immunity.
Re: Juvenile Idiopathic Arthritis (The Truth in Medicine) 3/12/2011 1782900

Not condoning the fish oil though!

 

[tara]

What are good anti-inflammatory herbs/supplements in a disease like this? I think it has to do with pathogens in the body/blood also activating the disease. Also a deficiency of natural killer T-cells is what I have, what could help boost those? I need immune boosting supplements I think.

There may be others who can advise on useful herbs or supplements.
I still think that the basics are likely to importantly include:
- seeing if there are irritants that you are eating that are continuously aggravating the situation, that you can remove to good effect, and
- working to meet your nutritional and other needs now to give your body the materials and energy to rebuild itself more robustly

 

[tara]

I think if this were me, I'd also be taking a closer look at Terry Wahls' approach, without taking on the low carb aspect of it. She recovered from a crippling condition largely through a radical change in diet, as well as some physical training. Part of that was focussing on getting a lot of nutrition from the food she ate.

ETA: Wahls shares with Peat a focus on how important it is that the mitochondria produce energy effectively, and getting all the nutrition the cells need for this from food. She doesn't eat the same diet as Peat, though.

 

[tara]

Some here eat refined sugars, but I think from what you've said about your history that you may be severely depleted in micronutrients, and may not be able to afford that.

I haven't read her book, or found a complete spec, but I think the diet Wahl's used to recover herself included meat, fish, a lot of non-starchy veges, and no grains, legumes or dairy.

https://www.furtherfood.com/wheelchair-biking-dr-wahls-miracle-recovery-autoimmune-disease/
"DTW: In the genetically susceptible person, gluten and dairy markedly increase inflammation and may be contributing to the develop of a wide variety of chronic diseases. Therefore I suggest to patients in our clinic that they remove all grain and dairy for one month and assess how they feel without either. That is the best way to determine if those foods are a problem for the person."

 

[TreasureVibe]

Some here eat refined sugars, but I think from what you've said about your history that you may be severely depleted in micronutrients, and may not be able to afford that.

I haven't read her book, or found a complete spec, but I think the diet Wahl's used to recover herself included meat, fish, a lot of non-starchy veges, and no grains, legumes or dairy.

https://www.furtherfood.com/wheelchair-biking-dr-wahls-miracle-recovery-autoimmune-disease/
"DTW: In the genetically susceptible person, gluten and dairy markedly increase inflammation and may be contributing to the develop of a wide variety of chronic diseases. Therefore I suggest to patients in our clinic that they remove all grain and dairy for one month and assess how they feel without either. That is the best way to determine if those foods are a problem for the person."

Thank you Tara, this sounds very interesting and might just be what I need. Indeed the foods you name, meat and especially fish for some odd reason, are the foods I crave and always make me feel better. I will look more into it. Thanks alot!

 

[tara]

I haven't read her book, or found a complete spec, but I think the diet Wahl's used to recover herself included meat, fish, a lot of non-starchy veges, and no grains, legumes or dairy.

IIRC, she also bright coloured berries and roots.

Peat speaks highly of orange juice, and many here thrive on it. But there are some who react badly (inflammation) to all citrus, so it may be another one to assess for yourself.

 

[tara]

Remind us how you've assessed your basic metabolism? Body temps/ TSH/ maintenance calories?

I agree with the suggestion to add sunbathing to your practice - I think you are on the right side of the world for that this time of year.

 

[Waynish]

You seem to post a lot with a strange mix of surprise and confidence in view. I haven't gone over your old posts - so I don't really remember - but something seems off...

 

[TreasureVibe]

You seem to post a lot with a strange mix of surprise and confidence in view. I haven't gone over your old posts - so I don't really remember - but something seems off...

Ever since having found this forum I'm looking at health and health subjects in such a different way, and also re-examining alot of health subjects I once thought I understood. Also I am re-evaluating my own health and coming to realizations like this topic.

Hence the surprise, yet confidence. The confidence is because of all the new information I am learning which looks promising to actually utilize with success in my own health.