JRA.... Journal of a Radical Arthritis Chick

Here I give advice, speak of my experiences and give information to those who want to better understand Rheumatoid Arthritis. I am NOT a medical professional, and you should always seek advice from a doctor.

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Location: MA, United States

Hello everyone! I am 28 years old and was diagnosed with JRA (Juvenile Rheumatoid Arthritis) when I was just 3 years old. I've had my battles with this disease over the years, and have decided to create a blog. I want to share my stories and adivce with other RA chicks, or anyone interested, to raise awareness and get insight from others. Feel free to comment/question me about anything. Thanks, and I hope you enjoy!

Thursday, March 28, 2013

Actemra, Methotrexate and an Update

I haven't updated this blog in way too long.  I apologize for that.  I've had so many things going on in my life, both good and bad, I got caught up with things.  I figured it was about time to update you all, and possibly try to write blogs more often.

Last year, I was on weekly Humira and Methotrexate injections.  Sometime around June, my right knee developed fluid and was severely swollen, as you can see in the photo below.

After seeing my rheumatologist, he confirmed with an MRI, that I had a Baker's Cyst.  A what?! I had never heard of this before.  It's basically a fluid filled cyst, caused by the inflammation in my knee.  My doctor explained that sometimes, the fluid gets pushed to the back of the knee, causing the cyst.  It happens when there is so much fluid, it has nowhere to go.  My knee ended up more swollen after this photo too.  After 3 steroid injections, the cyst almost went away, but not completely.  After discussing things, we decided that after 8 years, it was time to say goodbye to Humira.  We decided that Actemra infusions were the next best thing for me, and to continue the Methotrexate injections along with it.  

Once a month, I go into Boston and have my Actemra.  Here is me at my first infusion! 

Since being on the Actemra infusions, and the Methotrexate, my joints have never felt better! I quickly got better, and noticed less and less morning stiffness.  Currently, I'm experiencing no pain, no inflammation and no morning stiffness.  My CRP level is almost down to normal! I am happy to say, that I am do very well.  While, it is still to early to tell if this is truly working, I have hope that things will get better for me.  I also am making sure I eat a healthy diet, rich in foods and supplements that help battle inflammation.  While every one's bodies are different, I have hope that those of you still suffering, will have a medicine that works for you as well. :) 

What would you like to see in the next blog post?! Comment below! 

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Tuesday, December 6, 2011

Benefits of Fish Oil

It's well known that fish oil is very healthy for us, and is recommended by so many doctors.  I try to eat fish once a week, and figured that was enough.  Nope, you should have fish oil everyday!  In fact most doctors recommend taking at least 3 fish oil pills a day!  I decided to buy some pills for myself, after discussing it with my doctor, and have started taking them three times a day as instructed.  So why is fish oil so good for us?

First off, fish oil is taken from the tissues of oily fish.  It is not taken from one particular organ either, but taken from several and a fish oil capsule may contain oils from several different types of fish.  Fish oil contains something known as Omega-3 fatty acids -GOOD fat, yup you read that correctly.  It has well known health benefits, including reducing inflammation.  The type of fish include: mackerel, rainbow trout, lake trout, halibut, herring, sea bass, sardines, swordfish, oysters, albacore tuna, blue fin tuna, yellow fin tuna, turbot, pilchards, anchovies and salmon.  What's interesting is, fish don't actually produce Omega-3 fatty acids, but it is in the foods they eat, like other fish, or sea plants. 

What are the benefits of taking fish oil?

Heart Health: The American Heart Association has done several studies, and has proven that fish oil can help decrease the incidence of cardiovascular disease.  It works well to decrease bad cholesterol, and also helps increase the good cholesterol!  Fish oil also works well to help prevent clogged arteries, which in turn helps prevents heart attacks and strokes.

Weight Loss: Research has shown that with a healthy diet and regular exercise along with fish oil, it can help you loose weight faster, than those two alone. 

Immunity:  Research has also shown that fish oil, taken over time, can help build up your immune system and help prevent more colds and flu's from occurring.  It is also very beneficial to patients suffering from lupus and aid in reducing the pain and inflammation that may occur in joints, eyes, kidney, heart, blood vessels, lungs, nerves, etc.

Inflammation:  Fish oil has been proven to help reduce inflammation all over the body, including our  joints and lungs.  It is great for inflammation diseases such as Rheumatoid Arthritis, Asthma, and Crohn's disease! This is a well known supplement suggested to be taken by every rheumatologist I've encountered.

Depression and Anxiety: It is good for relieving depression, sadness, anxiety, restlessness, mental fatigue, stress, decreased sexual desire, suicidal tendencies and other nervous disorders. There has also been successful research that fish oil is great for helping treat bipolar disorders.

Alzheimer’s Disease: The Alzheimer's association recommends fish containing higher content of omega three fatty acids to patients as it acts as a protective diet during Alzheimer disease and dementia.  Fish oil is usually prescribed in aiding with the treatment of this disease.

ADHD or ADD:  Studies have been conducted that when children suffering from ADHD were given doses of fish oil and evening primrose capsules for 15 weeks, they showed significant improvement. Since our brain consists of about 60% of fats, especially essential fatty acids such as omega 3 and omega 6, fish oil helps in improving the functioning of the brain  It is also believed that fish oil is useful in the normal development of the brain.  Fish oil has also been proven that when pregnant women are given regular doses of this, the children show better hand eye coordination. 

Skin Care: Fish oil can help with those who suffer from dry skin and skin disorders such as eczema and psoriasis.  It is known to help reduce the loss of moisture from you skin, and also give you a soft glow to your skin.   It has also been shown that fish oil can help decrease acne!

Hair Care:  Want more healthy looking shiny hair?  Fish oil can help make your hair more healthy, and helps prevent hair loss.  It also can aid in helping your hair grow faster.

These are just some of the benefits of taking fish oil!  Amazing how it can help us in so many ways.  Are there risks in taking fish oil pills?  Of course!  So what are the risks? The risks below are usually an indicator of taking too much fish oil.  If you're a fish eater, decrease the amount of pills you take the day you're eating the fish to help prevent any side affects from occurring. This isn't a list of all possible risk, but just the most common.
 

- Thinning of the blood and reduced ability of the blood to clot, increased risk of hemorrhagic stroke.
Warning: Fish oil shouldn't be taken with blood thinning medication - warfarin or aspirin for example. It shouldn't be taken by anyone with bleeding disorders or uncontrolled hypertension. If you are taking any medication please check with your doctor before supplementing your diet with fish oil.
- Increased cholesterol in people with combined hyperlipidemia.
- Large doses* may suppress the immune system
- Large doses* can increase glucose levels in people with diabetes.
- Increased bleeding, nosebleeds, easy bruising.
- Upset stomach or intestines, nausea, diarrhoea, belching.
- Fishy odour.

*Large dose is 3000 mg of Omega-3 per day.  This is NOT 3000mg of Fish Oil, but of the Omega-3. Recommended dose of Fish Oil is is 3-4 capsules per day. Anything over this amount, is considered too much. 
As always I am NOT a medical professional, and starting ANY kind of medication, even a natural supplement should be discussed with a doctor before starting.  It is suggested to start off slow with the capsules, taking 1 a day for a few days, then increasing as time goes on.  This may help prevent any side effects from occurring.

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Monday, March 14, 2011

IgA-Deficiency

I always got sick as a kid, always had bad infections and it took more than one course of antibiotics to treat them.  As I got older, the infections started to get worse, and harder to control.  I had sinus infections twice a month, I had double ear infections for 5 months straight (I almost had to have tubes as an adult).  Then, I ended up with double pneumonia for 6 months straight, I was put on every antibiotic known to man, and it seemed to just be getting worse.  Finally, after they found out what was wrong, I was able to recover.  I was seen by an immunologist, and he ran some tests on my immune system, because it obviously wasn't working correctly.  I found out I have an IgA-deficiency, an anti-antibody to immonoglobulin A and an IgG subclass 2 deficiency.  What the heck does all of that mean?  Well, I'll explain, and this is what my blog is on today.

First off, what exactly is an antibody?  Antibodies or immunoglobulins are proteins in the body that guard against invading organisms or substances.  Basically, they attack viruses and illnesses to help them go away, our very own antibiotics, so to speak.  There are five types (classes) of immunoglobulins or antibodies in the blood: IgG, IgA, IgM, IgD, and IgE. The immunoglobulin class present in the largest amount in blood is IgG, followed by IgM and IgA. IgD is much lower, and IgE is present in only minute amounts in the blood.  Out of these classes, it is primarily IgG and IgM that protect us from infection. 

One of the most important jobs of protecting the body, is protecting the mucous membranes from the environment.  Mucous membranes are openings in our body that are easily exposed to the environment, they include: mouth, ears, sinuses and nose, throat, airways within the lung, gastrointestinal tract, eyes, and genitalia.  IgA is secreted to those areas, and it is the A antibodies job to protect those areas, other immunoglobulin classes are also found in these areas, but not in nearly the same amount as IgA.   If you were to take our A antibodies that are present and protective in these locations, they would equal one-and-a-half tennis courts.  So the importance of the IgA is very important.

A person with an IgA-deficiency, like me, has no immunoglobulin A to speak of.  In fact, in my case, my body has built up a resistance to A, known as an anti-A-antibody.  An antibody against another antibody, yes that's true, hopefully not too complicated to understand.  My body sees IgA as a foreign substance, if I were to get any, like in a blood transfusion, I'd go into anaphylactic shock.  There is no way to get these antibodies back, and leaves one immune system at risk.  Most doctors don't understand why this happens, there is no known cause.  My doctors believe it could be from years of being on immuno-suppressant medicines for my Rheumatoid Arthritis. 

What are symptoms of having an immune deficiency or how do you even know if you're immune system is missing some of it's important antibodies?  Most people don't experience any symptoms at all, and can go through life having no idea.  My doctors said that I could have had this deficiency for years, there's no way to pin-point when it occurred first.  Other than that,  the most common way to tell is recurrent infections or infections that seem to take more than one course of antibiotics to treat it, both of these happening very often.  The infections that may ocur often are: Bronchitis, recurrent diarrhea, conjunctivitis, mouth infection, ear infection, pneumonia, sinus infection, skin infections, or an upper respiratory infection.  Also, an IgA deficiency can be hereditary, so if it runs in the family, it's a good idea to get tested. 

How do you know if you have an immune deficiency?  If you are experiencing repeat infections, that never seem to go away, it's a good idea to talk to your doctor about it, especially if you're on immuno-suppressant medications.  To test for an immune deficiency is actually very, very simple.  The only way to test to see if a patient has an immune deficiency, is a blood test.  It's just normal blood tests that are taken, and they measure the levels of antibodies in your blood.  Next, they'll give you a vaccine like the flu or pneumonia vaccine and then re-test your blood in due time to see if your body responds to the vaccine as it would to a virus or foreign substance in your body.  If your body is working correctly, your anti-bodies will be elevated after the vaccine, to ward off the bacteria or virus present in the body.  That's how they tested mine, I found out vaccine's don't work on me, since my body doesn't have the antibodies to build up against a virus.  It's as simple as that!

How do you treat something like this? There is no specific treatment, it depends on the person and varies case by case.  Most people just have to go on extra courses of antibiotics when sick.  However if those with selective IgA deficiency who also have IgG subclass deficiencies (like myself) can benefit from immunoglobulin treatments.  My doctor has gone with two different courses of treatment.  I take the antibiotic Azithromycin 500mg, once a week and I also take something called Hizentra.  Hizentra (immune globulin) is a sterilized solution made from human plasma, that contain antibodies (but not A).  It is given subcutaneously, once a week.  As you can see in the photo, there are two needles that look like IVs in my tummy.  Yes, that's me, giving myself my Hizentra.

There is no cure, but some people who just have a low amount of a certain antibody, are able to get them back with medication, or time.  In rare cases, like mine, the body builds an immunity to those antibodies, making the immune system all the more vulnerable.  It puts your body at even more of a risk if you have to be on immuno-suppressant medications for illnesses like Rheumatoid Arthritis.  I have to be extra careful with germs, and have to be on the medicine regime of the Hizentra and antibiotics for life.  It makes going out into public, and seeing friends very difficult, but it's another lifestyle you just have to learn to adapt to.   This is something I had never heard of before being diagnosed.  I think it was important to do a blog on this topic, because you never know who could be experiencing this and have no idea that they could possibly get some help.  As always, I hope my blog was useful and can help others learn a bit more of rare or different things out there.

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