Emily has been diagnosed with: (All Rheumatic in nature)
Mixed Connective Tissue Disease (sister to Lupus). Mixed Connective Tissue Disease is a disease of the connective tissues. This is an AutoImmune Arthritis disease. Autoimmune is when the body attacks itself, thinking that it is an enemy invader. A disease falls under the arthritis umbrella if it's primary symptom is arthritis. MCTD is a mixture of: Lupus, Rheuamtoid Arthritis, and Polymyositis. Emily had some myositis with her MCTD, but she also developed Dermatomyositis as its own condition. MCTD is a systemic disease, meaning it can affect the organs. She is susceptible to Pulminary Hypertension, pericarditis and pleurisy, among other diseases and conditions.
Mixed Connective Tissue Disease (sister to Lupus). Mixed Connective Tissue Disease is a disease of the connective tissues. This is an AutoImmune Arthritis disease. Autoimmune is when the body attacks itself, thinking that it is an enemy invader. A disease falls under the arthritis umbrella if it's primary symptom is arthritis. MCTD is a mixture of: Lupus, Rheuamtoid Arthritis, and Polymyositis. Emily had some myositis with her MCTD, but she also developed Dermatomyositis as its own condition. MCTD is a systemic disease, meaning it can affect the organs. She is susceptible to Pulminary Hypertension, pericarditis and pleurisy, among other diseases and conditions.
http://emedicine.medscape.com/article/335815-overview
http://www.cincinnatichildrens.org/health/m/mctd/
Juvenile Dermatomyositis- Skin/ Muscle Inflammation and Weakness. Untreated the patient will be wheelchair bound, and most likely unable to brush their own hair or teeth. The muscles don't just become weak; the muscle tissues are actually destroyed and need to be rebuilt. JM is also a systemic disease.
http://www.curejm.com/info/jm.htm
Juvenile Rheumatoid Arthritis- (AKA- Juvenile Idiopathic Arthritis) Emily is positive for the Rheumatoid Factor in the blood stream making her disease closer to the adult version. Juvenile Arthritis can stay to joints or can affect organs! Emily has poly JA (more than 5 joints), but some children have the systemic form. (Stills Disease) Untreated this can be terminal. Poly will still cause significant disability and disfigurement if untreated.
http://www.cincinnatichildrens.org/health/m/mctd/
Juvenile Dermatomyositis- Skin/ Muscle Inflammation and Weakness. Untreated the patient will be wheelchair bound, and most likely unable to brush their own hair or teeth. The muscles don't just become weak; the muscle tissues are actually destroyed and need to be rebuilt. JM is also a systemic disease.
http://www.curejm.com/info/jm.htm
Juvenile Rheumatoid Arthritis- (AKA- Juvenile Idiopathic Arthritis) Emily is positive for the Rheumatoid Factor in the blood stream making her disease closer to the adult version. Juvenile Arthritis can stay to joints or can affect organs! Emily has poly JA (more than 5 joints), but some children have the systemic form. (Stills Disease) Untreated this can be terminal. Poly will still cause significant disability and disfigurement if untreated.
Emily's arthritis affects almost every joint. She has every finger and toe involved, her ankles, knees, wrists, hips, shoulders, neck, back, and very occasionally her ribs. (Costochondritis)
http://www.arthritis.org/ja-fact-sheet.php
Scleroderma- The translation is "Stone Skin". This can toughen or harden the skin, leading to disfigurement and disability. Scleroderma is also a systemic disease. Yes- your organs can start to turn hard! This can also cause problems with the esophagus. It starts to close, hampering the ability to swallow. Doctors refer to this tissue as "patulous", or spreading. They also say that the esophagus is dilating, but by that they apparently mean closing. Severe cases require surgery to re-open the throat.
Scleroderma- The translation is "Stone Skin". This can toughen or harden the skin, leading to disfigurement and disability. Scleroderma is also a systemic disease. Yes- your organs can start to turn hard! This can also cause problems with the esophagus. It starts to close, hampering the ability to swallow. Doctors refer to this tissue as "patulous", or spreading. They also say that the esophagus is dilating, but by that they apparently mean closing. Severe cases require surgery to re-open the throat.
http://www.scleroderma.org/medical/newly-diagnosed/newly-diagnosed.shtm
Secondary Raynaud's Phenomenon- Raynaud's can be a primary disease, occurring on it's own and related to no other condition. It is actually more severe as a secondary condition. This is where the body overreacts to cold. True Raynaud's has three phases- When the affected area gets cold it turns white as the blood stops flowing, then purple, then red as the blood rushes back in. White is the worst. Raynaud's sufferers can have hands, feet, ears, nose and tongue affected, and can suffer an attack at any time in any temperature. Emily has gotten frost bite at school while inside of her cafeteria! When a flare happens, she says that it feels tingly and very painful, like your hands have been in the snow and then placed under hot water. A report that I saw shows that her Raynaud's is "Significant". And that was without seeing a flare!
http://www.nhlbi.nih.gov/health/dci/Diseases/raynaud/ray_what.html
Zachary has: Psoriatic Arthritis (Psoriasis + Juvenile Arthritis) Psoriasis is another autoimmune disease. The body attacks the skin. Psoriasis sufferers reproduce skin cells at a much faster rate than non-sufferers. Large patches of skin cells accumulate, looking like sores. It is different from eczema. Eczema is not autoimmune, and generally only affects places like elbows, knees and hands. Psoriasis appears under the arms, around the groin and buttocks, around the ears and scalp, and pretty much anywhere else. Psoriasis can even appear on the eyelids and inside of the ear! Zach's psoriasis only affects his jaw and fingers at present time. I am left to wonder if, without our current treatment, the arthritis would begin to affect all of the joints that the psoriasis is currently covering. I suspect so. Once again, we are blessed to have Enbrel in our lives. <3
Current Meds for Emily are:
Remicade- IV Infusion that targets the "T" cells in the immune system.
Rituxan- IV Infusion that kills the "B" cells in the immune system
CellCept- Actually a medicine used for organ transplant in larger doses. Used for many rheumatic diseases.
Prednisone- The oral steroid. Steroids control inflammation.
Prilosec- for Reflux/Stomach distress. In Emily's case it is used to help her throat muscles, as well as to protect her stomach from the steroids.
Procardia- a Calcium Channel Blocker used to open up the blood vessels to help control the Raynaud's symptoms. Also to lower her blood pressure which has been high from the mass amounts of steroids.
Zyrtec- Currently used as a preventative med so she doesn't get sick.
Symbacort- Used to prevent and treat asthma symptoms
Singulair- For asthma symptoms
IVIg- Only used monthly or occasionally, this IV treatment takes antibodies from the blood of 2,000 donors. It is then purified to be free from diseases and viruses, frozen, then given via IV to help confuse the patient's body. With Rheumatic diseases, the body is attacking itself. This treatment is also used to help patients with Autism, Multiple Sclerosis, Muscular Dystrophy, some types of Leukemia & many more diseases....
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Zachary is on:
Enbrel- Similar to Remicade, Enbrel is an Anti-TNF blocker, one of the older drugs in a new class called Biologics. They are disease modifiers, and can actually reverse some damage.
Methotrexate- A medicine more associated as a chemo med, this is also widely used for many different rheumatic conditions.
Leuvocorin- Used to help prevent side effects from her other medicines, especially mouth sores, fatigue and nausea associated with MTX.
Zyrtec, and Symbacort, (see Emily's meds)
Secondary Raynaud's Phenomenon- Raynaud's can be a primary disease, occurring on it's own and related to no other condition. It is actually more severe as a secondary condition. This is where the body overreacts to cold. True Raynaud's has three phases- When the affected area gets cold it turns white as the blood stops flowing, then purple, then red as the blood rushes back in. White is the worst. Raynaud's sufferers can have hands, feet, ears, nose and tongue affected, and can suffer an attack at any time in any temperature. Emily has gotten frost bite at school while inside of her cafeteria! When a flare happens, she says that it feels tingly and very painful, like your hands have been in the snow and then placed under hot water. A report that I saw shows that her Raynaud's is "Significant". And that was without seeing a flare!
http://www.nhlbi.nih.gov/health/dci/Diseases/raynaud/ray_what.html
Zachary has: Psoriatic Arthritis (Psoriasis + Juvenile Arthritis) Psoriasis is another autoimmune disease. The body attacks the skin. Psoriasis sufferers reproduce skin cells at a much faster rate than non-sufferers. Large patches of skin cells accumulate, looking like sores. It is different from eczema. Eczema is not autoimmune, and generally only affects places like elbows, knees and hands. Psoriasis appears under the arms, around the groin and buttocks, around the ears and scalp, and pretty much anywhere else. Psoriasis can even appear on the eyelids and inside of the ear! Zach's psoriasis only affects his jaw and fingers at present time. I am left to wonder if, without our current treatment, the arthritis would begin to affect all of the joints that the psoriasis is currently covering. I suspect so. Once again, we are blessed to have Enbrel in our lives. <3
Current Meds for Emily are:
Remicade- IV Infusion that targets the "T" cells in the immune system.
Rituxan- IV Infusion that kills the "B" cells in the immune system
CellCept- Actually a medicine used for organ transplant in larger doses. Used for many rheumatic diseases.
Prednisone- The oral steroid. Steroids control inflammation.
Prilosec- for Reflux/Stomach distress. In Emily's case it is used to help her throat muscles, as well as to protect her stomach from the steroids.
Procardia- a Calcium Channel Blocker used to open up the blood vessels to help control the Raynaud's symptoms. Also to lower her blood pressure which has been high from the mass amounts of steroids.
Zyrtec- Currently used as a preventative med so she doesn't get sick.
Symbacort- Used to prevent and treat asthma symptoms
Singulair- For asthma symptoms
IVIg- Only used monthly or occasionally, this IV treatment takes antibodies from the blood of 2,000 donors. It is then purified to be free from diseases and viruses, frozen, then given via IV to help confuse the patient's body. With Rheumatic diseases, the body is attacking itself. This treatment is also used to help patients with Autism, Multiple Sclerosis, Muscular Dystrophy, some types of Leukemia & many more diseases....
--------------------------------------------------
Zachary is on:
Enbrel- Similar to Remicade, Enbrel is an Anti-TNF blocker, one of the older drugs in a new class called Biologics. They are disease modifiers, and can actually reverse some damage.
Methotrexate- A medicine more associated as a chemo med, this is also widely used for many different rheumatic conditions.
Leuvocorin- Used to help prevent side effects from her other medicines, especially mouth sores, fatigue and nausea associated with MTX.
Zyrtec, and Symbacort, (see Emily's meds)
Have you tried seeing a functional medicine or integrative doctor? Some chronic diseases are the interaction of genetic glitches and inflammatory triggers. Mainstream medicine is good at the genetic glitches. Functional/integrative medicine is good at the inflammatory triggers, which vary for each of us based on our immune system and genetic glitches. I learned this after 20+ years of fibromyalgia and a year of medical hell. I have met people who have recovered, in whole or part, or arrested progress, of a wide spectrum of neurological and autoimmune diseases who learned the triggers for them, ended exposures, and worked on mitigation. In my experience, mainstream medicine focuses on genetics to understand and Rx to manage symptoms, but not enough on identifying and removing triggers.
ReplyDeleteWe have not yet, for 2 reasons. The first is cost. My insurance won't cover it. It's ridiculous, but it won't, and our copays keep us broke enough as is. Second reason is that I don't know of any around me. They are probably around, but I hear of more about 2 hours away than anywhere close to me. I have been thinking about it more and more, and we are trying to find a way to make it happen. I will look into it a bit further. Thanks!
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