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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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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Saturday, March 12, 2011

Osteopenia and Osteoporosis

I recently found out that I'm Osteopenic in my neck and right hip.  I had never heard of it before, until I received my bone density scan results in the mail.  Since those with RA are more prone to getting Osteopenia and Osteoporosis, I figured it was time to do a blog on both. 

If you don't already know, patients who have RA, are at risk for these because inflammation untreated and being on prednisone for a long time, can cause some bone loss.  I've been on and off prednisone for almost 23 years, and my rheumatologists have had a hard time controlling my JRA since I was 3.  Because of that, I've had inflammation many times and each time I was put on prednisone since it's the only thing that works.  For those who don't know, prednisone is corticosteroid tablet that is used as a short-term medicine only, because of it's long term side effects, like bone loss.  Let's take a look at what Osteopenia and Osteoporiosis actually are, and how they affect us.

Osteopenia is diagnosed when the bone mineral density (BMD) is lower than normal, but not low enough to be Osteporosis.  Bone mineral density is a measurement of the level of minerals in the bones, which indicates how dense and strong they are.   If your BMD is low, compared with others, than you are considered osteopenic and are are a greater risk, as time goes on, of developing osteoporosis.   As you get older, your bones naturally become thinner because existing bones cells are absorbed into the body faster than new bone is being made.  When this occurs, the bone loses mass, structure, and minerals, making them weaker and more prone to breaking or fracturing.   Bone loss beings at age 30, when your bones have reached their peak BMD.  The stronger your bones are by the time you're 30, the less likely you are to develop osteopenia or osteoporosis. 

Osteopenia is more common in women, than men because, women have lower BMD and bone loss speeds up when hormonal changes take place, like menopause.  In both men and women different factors can contribute to osteopenia, such as: Eating disorders, or metabolism troubles that don't allow the body to absorb or take in vitamins and minerals. Chemotherapy, or medicines like steroids used to treat certain conditions like Rheumatoid Arthritis.  Exposure to radiation.  Other conditions such as family history, being Caucasian or Asian, limited exercise, smoking, drinks lots of soda and alcohol. 

Osteopenia is treated by taking action to help prevent it from turning into osteoporosis.  Treatment includes change in diet, like adding more calcium enriched foods. Foods that are rich in calcium include cheese, ice cream, leafy green vegetables (spinach is my favorite), low-fat milk, Salmon, Sardines (with bone), Tofu and yogurt.   Your doctor may also recommend you go on a Vitamin D supplement, since vitamin D helps your body absorb calcium into the bones.  It's important to get at least 1,200 milligrams per day of calcium and 800 - 1,000 international units of vitamin D3. Weight bearing exercises, and sometimes medicine, like Boniva, is used especially if the risk of getting osteoporosis is high.

Osteoporosis, is severe thinning of the bone tissue and bone mineral density over time.  It's estimated that 1 in 5 American women over the age of 50 are diagnosed with Osteoporosis.  "Calcium and phosphate are two minerals that are essential for normal bone formation. Throughout youth, your body uses these minerals to produce bones. If you do not get enough calcium, or if your body does not absorb enough calcium from the diet, bone production and bone tissues may suffer." (Med Health)   This happens over time, and since Osteoporosis has no symptoms, it's usually not detected until one falls and fractures a bone.  This is why early testing is very important, as well as early treatment, even diet changes, can help huge in the long run.

Osteoporosis is treated in similar ways as Osteopenia, and the main goal of both is to slow down or even stop the progression of bone loss.  Change in diet is also used to treat Osteoporosis, as you can see above.  Bisphosphonates are the most common used medications given.   These medications are taken in pill form and they include alendronate (Fosamax), ibandronate (Boniva), and risedronate (Actonel). Most are taken by mouth, usually once a week or once a month.  Bisphosphonates can also being given intravenously, but that is rarely the case.   There are many other medications used as well like nasal sprays and hormone replacement therapy, but are less common.

Exercise is another very much recommended mode of treatment, it helps prevent fractures.  Weight-bearing exercises such as jogging, playing tennis or dancing; Resistance exercises like free weights and stretch bands; Balance exercises like yoga or tai-chi; riding a stationary bike or using rowing machines. These help strengthen the bones and muscles to prevent fractures.  It's important to know that if you are at risk, don't do any exercise that you are at risk of falling, you could end up hurting yourself worse.

It's important to follow your doctors orders if you are diagnosed with either of these bone loss disorders.  If left untreated, you could end up with a compression fracture of the spine, disability caused by severely weakened bones, hip and wrist fractures, and the loss of the ability to walk due to a hip fracture.   Call your doctor if you have any of these symptoms.


There are steps to take to prevent either Osteoporosis or Osteopenia from occurring, even if you are at risk.   Eating a diet that is rich in Vitamin D and calcium is one sure way to prevent it.  If you're not sure you're getting enough, talk to your doctor about taking Vitamin D and Calcium supplements.  Other ways to prevent bone loss is avoiding drinking access alcohol, don't smoke and get regular exercise.  Following these simple steps can help you lead a healthy life.

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Monday, March 7, 2011

Low fevers and RA

Thank you Brenna for suggesting this as a topic for my blog!  Have any of you noticed that you have a low fever?  Even when I'm sick, I don't tend to run fevers.  I thought it was odd, and found out from talking to fellow RA sufferers, they are the same.  I wanted to take the time to do some research into this matter, and of course, share it with all of my readers!

 I did a poll among friends, and fellow RA sufferers to see what temperature they normally run.  I was curious with the results and wanted to start off by sharing them with you.  Me: 97.6°, Melanie: 96.7°-97.1°, Marie: 97°, Hannah: 99°, Brenna: 97.6°-98.1°.  Most of us seem to run on the lower side.

First off, a fever of about 99°F or higher usually means there is an infection in the body.  As soon as the cause of the fever is found, and treated, the fever should go away.

An autoimmune disease is when the body’s immune system goes wacko and attacks itself, destroying normal tissues as if it were a foreign substance, basically like a virus.  When this happens, the body reacts as it normally would during a virus, including a fever.  A chronic fever, even low-grade, is very common among those who have an autoimmune disease.   Patients with rheumatoid arthritis often experience a low-grade fever when there is inflammation and pain present.   A true high fever, one ranging 100.4° F or higher, is not normal for RA, this usually indicates an infection is present.  Patients with RA are at an increased risk of infection, so when you have a high fever, you know something is wrong.  If you are running a fever of 101°F or higher, it is advisable to call your doctor right away.   
Typically, we experience fevers, even low ones, when there is a flare present.  It varies by person, some run low, some run high, but there is more to it than that.  After reading through some articles, I found out that not only having RA can cause low-grade fevers, but NSAIDs as well can be the culprit!  Think about it, when you aren’t feeling well most people take Tylenol® or Advil ®, which are used to lower one’s fever.  NSAIDs are used as treatment for rheumatoid arthritis, and while reading through side effects of medications like aspirin, and prednisone, low fever was one of them!  It was advised that if you are running a low fever, to avoid these medications , because having a low fever is actually not good for you.
Having a low fever may attribute to some of our symptoms and daily lives.  Having a low body temperature can cause things like: Fatigue, headaches, migraines, PMS, easy weight gain, depression, irritability, fluid retention, anxiety and panic attacks, hair loss, poor memory, poor concentration, low sex drive, unhealthy nails, dry skin and hair, cold intolerance, heat intolerance, low motivation, low ambition, insomnia, allergies, acne, carpal tunnel syndrome, asthma, odd swallowing sensations, constipation, irritable bowel syndrome, muscle and joint aches, slow healing, sweating abnormalities, Raynaud's Phenomenon, itchiness, irregular periods, easy bruising, ringing of the ears, flushing, bad breath, dry eyes/blurred vision, and more. 
Our body depends on certain enzymes to keep it running properly.  When our temperatures run high, or low, the enzymes go along with it.  In order to maintain normal function, or body temperatures must remain in the normal range, otherwise they cause symptoms like the ones listed above.
Unfortunately, there wasn’t too much information about those with RA and low fevers.  It seems that having a flare, and/or some of our medications seem to be the cause of it.  I’d advise that if you seem to run really low, bring it up to your doctor and see what he or she has to say about it.  Maybe it’s your medication, or maybe it’s a sign your medication isn’t working, or maybe it’s just normal for us to have low fevers.  Hopefully in the future, there will be more research into this.

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Friday, March 4, 2011

Carpal Tunnel Syndrome

As if having one disease is bad enough, most RA sufferers also have to worry about other illnesses they have as well.  Personally, I suffer from at least 7 different ailments.  A few people very close to me suffer from Carpal Tunnel Syndrome, I know a little bit about it, but not too much. So, since I'd like to know about what my family and friends suffer from, I figured it'd be a great topic for my next blog post.

First off, the carpal tunnel is a passageway in the wrist through which nerves and the flexor muscles of the hands pass (see the photo to the left).  The tunnel consists of bones and connective tissue. Several tendons and a nerve pass through it.   The canal is narrow and when any of the nine long flexor tendons passing through it swells or degenerates, the narrowing of the canal often results in the median nerve getting entrapped or compressed, a medical condition known as carpal tunnel syndrome.

The median nerve controls the feelings of sensation on the palm side of the fingers and thumb, but not the pinky finger.  As well, it controls impulses to some small muscles in the hand that allow the fingers and thumb to move. The carpal tunnel, a narrow, rigid passageway of ligament and bones at the base of the hand, houses the median nerve and tendons. Sometimes, thickening from irritated tendons or other swelling narrows the tunnel and causes the median nerve to be compressed. The result may be pain, weakness, or numbness in the hand and wrist, radiating up the arm.

Symptoms of carpal tunnel include frequent burning, tingling, or itching numbness that occurs in the palm of the hand and fingers, especially the thumb, index and middle fingers.  These feelings start slowly, and gradually increase with time.  Some carpal tunnel sufferers say their fingers feel useless and swollen, even though little or no swelling is apparent.  It usually starts at night, in one or both hands, since most people sleep with flexed hands.  Usually the person wakes up with the need to "shake out" the hand or wrist.  As the symptoms worsen, people will feel the tingling during the day as well.  This syndrome can also cause a decreased strength in grip, which will make it difficult to form a fist, grasp small objects and even perform normal tasks.  In chronic, and untreated cases, the muscles at the base of the thumb may waste away.

Carpal Tunnel Syndrome is caused by a combination of factors that increase pressure on the median nerve and tendons in the carpal tunnel, rather than a problem with the nerve itself (see photo to the right).  In most cases the disorder is due to the fact that the carpal tunnel is simply smaller in some people than in others.  Other contributing factors include trauma or injury to the wrist that cause swelling, such as sprain or fracture; over activity of the pituitary gland; hypothyroidism; rheumatoid arthritis; mechanical problems in the wrist joint; work stress; repeated use of vibrating hand tools; fluid retention during pregnancy or menopause; or the development of a cyst or tumor in the canal. In some cases no cause can be identified.

Who is at risk for developing Carpal Tunnel Syndrome? Women are three times more likely than men to develop carpal tunnel syndrome, perhaps because the carpal tunnel itself may be smaller in women than in men. The dominant hand is usually affected first and produces the most severe pain. People with diabetes or other metabolic disorders that directly affect the body's nerves and make them more susceptible to compression are also at high risk. Carpal tunnel syndrome usually occurs only in adults.

How is Carpal Tunnel Syndrome diagnosed? First a physical examination of the hands and wrist are done to rule out any other underlying causes.  The wrist is examined for tenderness, swelling, warmth, and discoloration. Each finger should be tested for sensation, and the muscles at the base of the hand should be examined for strength and signs of atrophy. Routine laboratory tests and X-rays can reveal diabetes, arthritis, and fractures.   I also found this from a Carpal Tunnel website: "Physicians can use specific tests to try to produce the symptoms of carpal tunnel syndrome. In the Tinel test, the doctor taps on or presses on the median nerve in the patients wrist. The test is positive when tingling in the fingers or a resultant shock-like sensation occurs. The Phalen, or wrist-flexion, test involves having the patient hold his or her forearms upright by pointing the fingers down and pressing the backs of the hands together. The presence of carpal tunnel syndrome is suggested if one or more symptoms, such as tingling or increasing numbness, is felt in the fingers within 1 minute. Doctors may also ask patients to try to make a movement that brings on symptoms."

How is it treated?  Immediate treatment includes immobilizing the wrist for at least two weeks.  Avoiding activities that may further injure the wrist, and wearing a splint helps keep the wrist from moving and twisting.  Also, applying ice helps alleviate any swelling.  There is also some medications that are used to treat CTS in severe cases.  Nonsteroidal anti-inflammatory drugs, such as aspirin, ibuprofen, and other nonprescription pain relievers, may ease symptoms that have been present for a short time.  Corticosteroids (such as prednisone) or the drug lidocaine can be injected directly into the wrist or taken by mouth (in the case of prednisone) to relieve pressure on the median nerve and provide immediate, temporary relief to persons with mild or intermittent symptoms.  Additionally, some studies show that vitamin B6 supplements may ease the symptoms of carpal tunnel syndrome. 

In serious cases, surgery may be required to treat the Carpal Tunnel Syndrome.  There are a couple different types of surgery.  Open release surgery, the traditional procedure used to correct carpal tunnel syndrome, consists of making an incision up to 2 inches in the wrist and then cutting the carpal ligament to enlarge the carpal tunnel. The procedure is generally done under local anesthesia on an outpatient basis, unless there are unusual medical considerations. Endoscopic surgery may allow faster functional recovery and less postoperative discomfort than traditional open release surgery. The surgeon makes two incisions (about ½" each) in the wrist and palm, inserts a camera attached to a tube, observes the tissue on a screen, and cuts the carpal ligament (the tissue that holds joints together). This two-portal endoscopic surgery, generally performed under local anesthesia, is effective and minimizes scarring and scar tenderness, if any. Single portal endoscopic surgery for carpal tunnel syndrome is also available and can result in less post-operative pain and a minimal scar.  It generally allows individuals to resume some normal activities in a short period of time.

Surgery may relieve most symptoms right away, but a full recovery from carpal tunnel surgery can take months. Since it is surgery, an open wound, normal complications after surgery could be infection, nerve damage, stiffness, and pain at the scar. Since the carpal tunnel ligament is cut, some patients may lose their strength in that wrist. Physical therapy after surgery is a must, to help restore that wrist's strength. Some patients may need to adjust job duties or even change jobs after recovery from surgery. Recurrence of carpal tunnel syndrome following treatment is rare. The majority of patients recover completely.

Since Carpal Tunnel Syndrome is a serious and debilitating disease, especially if left untreated, you should see a doctor right away if you have any symptoms of it.  I know a few people who suffer from this disease, and it has affected their lives very much so.  A friend of mine had to have surgery for her Carpal Tunnel Syndrome in both of her hands, back in 2009.  She also has RA, so to have both at such a young age, must be tough.  She is a tough cookie though, she works and is in her first year of college.  A lot to go through, but she manages well.  The key to any illness is to stay strong, and always get treatment at the first sign of any symptoms.

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Wednesday, February 2, 2011

Why a Gluten-free diet?

"I'd like to see more on the connection (or lack of) between wheat/gluten and RA. I've read the theories on why gluten and casein (dairy) can influence RA and it makes sense. I'm still completely new to all this." -- Callie.  Thank you for asking this Callie, I too have wondered this same question.  I don't really know much about gluten free diets at all, but I see so many chicks discussing that they are on it and it's been so great for them.  First, let's take a look at what "gluten free" actually means.

A gluten-free diet is a diet completely free of gluten. Gluten is a protein found in wheat (including kamut and spelt), barley, rye, malts and triticale. Gluten is also used as a food additive in the form of a flavoring, stabilizing or thickening agent, often hidden under "maltodextrine", "dextrine", and "dextrose". A gluten-free diet is the only medically accepted treatment for celiac disease, the related condition dermatitis herpetiformis, and wheat allergy. Additionally, a gluten-free diet may exclude oats, however medical practitioners are divided on whether oats are an allergen to celiac disease sufferers or if they are cross-contaminated in milling facilities by other allergens.

Alright, so what foods are gluten-free? Which foods can I and can I not eat? Grains are used in the processing of many ingredients, so it will be necessary to seek out hidden gluten.  The following terms found in food labels may mean that there is gluten in the product.
  • Hydrolyzed Vegetable Protein (HVP), unless made from soy or corn
  • Flour or Cereal products, unless made with pure rice flour, corn flour, potato flour or soy flour
  • Vegetable Protein, unless made from soy or corn
  • Malt or Malt Flavoring, unless derived from corn
  • Modified Starch or Modified Food Starch, unless arrowroot, corn, potato, tapioca, waxy maize or maize is used
  • Vegetable Gum, unless made from carob bean, locust bean, cellulose, guar, gum arabic, gum aracia, gum tragacanth, xantham or vegetable starch
  • Soy Sauce or Soy Sauce Solids, unless you know they do not contain wheat
Foods that are gluten-free include: fresh meat, cheese, milk, fresh herbs, fruit, eggs, corn tacos, Jell-O, Wine Vinegar, jam, honey, almonds, popcorn and more.  You can see a whole list of foods that are safe for gluten-free diets at the gluten-free chef.  You can read more: HERE

There is now ample information in the medical literature to indicate that a prebiotic rich diet leads to demonstrable health benefits.  These include:
  • Increased calcium absorption
  • Stronger bones and bone density
  • Enhanced immunity
  • Reduced allergies and asthma in infants and children
  • A lower blood triglyceride level
  • Appetite and weight control
  • Lower cancer factors in the gut
  • Other benefits, including an increased sense of well being

So, how and why is gluten-free good for those of us with RA? There have been some reports that gluten-free can help lower inflammation, and help reduce further damage on the joints.  According to John Hopkins Medicine "Following a gluten-free vegan diet appears to be an effective way of reducing the risk of heart disease and stroke in people with rheumatoid arthritis".  A study was done to determine how this works.  The study took patients with RA and spilt them into two groups, one that went gluten-free and no meant, the other was a control group.  The patients stuck with the diet for a year, and afterwards the results showed that they had lost an average of 9lbs, reduced their BMI, lowered their cholesterol, and had a higher level of a certain antibody that helps protect the the buildup of plaque in the arteries.  You can read the entire study HERE   I also found this great blog that has more info on gluten-free and RA, and some yummy recipes that are gluten-free.  You can read more about it HERE

It seems that overtime, gluten-free can be beneficial to those with RA.  It's mostly used to treat Celiac disease, and it was found that 26% of those with RA, also have Celiac disease.  One study claimed that if Celiac is in your family, or your have RA, you could go gluten-free to prevent that from happening.  I'm still debating on whether or not to go gluten-free.  I know it has worked very well for many people, so it could be a great consideration.  If you are considering starting ANY diet, always talk with your doctor about it first, some diets could interfere with medications or health problems.

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Sunday, January 30, 2011

How do Lung nodules form from RA?


Thanks Peggy for asking this question!  I was curious myself as to if RA could affect our lungs, and how. I figured I'd make this blog on RA in the lungs, and all the complications it could possibly cause, not just nodules.  I read that although RA primarily affects our joints, it can also affect our lungs.  There are four common complications to lungs, due to RA.  They include:






- Painful breathing. Rheumatoid arthritis can cause inflammation of the lining of the lungs (pleurisy). The inflammation can cause sharp pain while breathing.

- Shortness of breath. Fluid due to inflammation of the lining of the lungs may accumulate around the lungs (pleural effusion). This accumulation can cause shortness of breath.

- Lung nodules. Small lumps may form in the lungs (rheumatoid nodules), as well as in other parts of the body. Lung nodules usually cause no signs or symptoms, and they don't pose a risk of lung cancer. In some cases, however, a nodule can rupture and cause a collapsed lung.

- Scarring of the lungs. Rheumatoid arthritis can lead to scarring within the lungs. Signs and symptoms may include shortness of breath, chronic dry cough, fatigue, weakness and loss of appetite.

Now let's take a look at each complication. In the last blog I wrote about rib pain and RA and I explained pleurisy, so instead of repeating myself, I will skip that one.  If you'd like to read more about pleurisy, please look back at the previous blog "Can you get RA in your Ribs?!"  It includes an email from my Rheumatologist explaining this very question, and information about pleurisy as well as Costochondritis.


A Pleural effusion is an accumulation of fluid between the layers of tissue that line the lungs and chest cavity.  Your body produces pleural fluid in small amounts to lubricate the surfaces of the pleura, the thin tissue that lines the chest cavity and surrounds the lungs. A pleural effusion is an abnormal, excessive collection of this fluid.  Transudative pleural effusions are caused by fluid leaking into the pleural space. This is caused by elevated pressure in, or low protein content in, the blood vessels. Congestive heart failure is the most common cause.   Exudative effusions usually result from leaky blood vessels caused by inflammation (irritation and swelling) of the pleura. This is often caused by lung disease. Examples include lung cancer, lung infections such as tuberculosis and pneumonia, drug reactions, and asbestosis.  Symptoms include sharp chest pain that is usually worse with a cough or deep breaths, cough, fever, hiccups, rapid breathing, shortness of breath and sometimes there are no symptoms at all.  Call your health care provider if you have symptoms of pleural effusion.

Lung nodules are small round growth on the lung that should be considered serious because it could be a type of early stage cancer. As precaution, every doctor will observe these growths as malignant (cancerous), until they have sufficient proof that it is benign (not cancerous).  People will usually not experience any specific symptoms that suggest that a lung nodule might be present. The majority of cases are discovered by chance during chest x-rays or CT scans.  Lung nodules can form from:

-Hamartomas (the abnormal formation of normal tissue is the most common – 75% of benign nodule cases). 
-Bacterial infections (Tuberculosis, round pneumonia, atypical mycobacteria). 
-Fungal infection (coccidioidomycosis known as Valley fever, histoplasmosis known as darling’s disease)
-Anthracosilicosis (Accumulation of carbon and silica in the lungs from inhaled coal dust)
-Fibrosing alveolitis ( a chronic, progressive form of lung disease characterized by fibrosis of the supporting framework (interstitium) of the lungs)
-Rheumatoid arthritis
-Bronchogenic cysts (rare) (Bronchogenic cysts are small, solitary cysts or sinuses, most typically located in the region of the suprasternal notch or over the manubrium)
-Hemangiomas of the lung (benign tumour)
-Lymph node hyperplasia (Known as Castleman’s disease - rare benign tumour)
-Wegener’s granulomatosis (rare)
-Parasitic infection (prevalent in temperate, tropical and subtropical regions of the world)

Since this is an RA blog, and it's the question that Peggy asked, let's take a further look into how RA can cause lung nodules.  Roughly one percent of RA patients show signs of pulmonary rheumatoid nodules in conventional X-rays, according to the Johns Hopkins Arthritis Center. However, high resolution computed tomography (CT) scans reveal signs of nodules in roughly 22 to 28 percent of patients.  Rheumatoid lung nodules appear most frequently in men with active RA who also have high blood levels of the autoimmune antibody called rheumatoid factor, Johns Hopkins reports. Women and individuals with low blood levels of rheumatoid factor may also be affected. Smoking may be a risk factor for these nodules. Typically, rheumatoid lung nodules do not cause symptoms and do not develop into lung cancer, the Mayo Clinic reports. Potential complications include erosion of a nodule through the lung, infection and pneumothorax (collapsed lung).  Additional potential effects of rheumatoid lung disease include pulmonary fibrosis (lung scarring), pulmonary hypertension (localized high blood pressure) and pleural effusion (fluid buildup inside the chest). Nodules are usually found in patients who have been suffering from RA for quite some time. Cigarette smoking in patients who have RA increases the chance that nodules will form. Methotrexate, a medication used to manage the symptoms of RA, has been found to increase chances that nodules will form.


Scarring of the lungs Chronic inflammation can lead to scarring of lung tissue, swelling of the tissue lining the lungs, constriction of arteries that feed blood to the lungs, airway restriction and pulmonary fluid buildup. Though some of these effects are treatable, others can cause irreversible damage.  Rheumatoid arthritis can lead to scarring of lung tissue and a group of conditions referred to as interstitial lung disease (ILD) that make breathing difficult and prevent sufficient oxygen from reaching the bloodstream. It's estimated that clinical significant ILD occurs in about 3 percent to 5 percent of RA patients. Interstitial lung disease can cause dyspnea (breathlessness), dry cough, wheezing, chest pain and clubbed fingernails (nails that curl over the ends of the fingers). Scarring is usually irreversible, and symptoms are typically progressive. Scarring can also occur in the connective tissue of the alveoli (air sacs) of the lungs, causing a condition called pulmonary fibrosis. Pulmonary fibrosis leads to symptoms such as chronic dry cough, shortness of breath, fatigue, weakness, loss of appetite and rapid weight loss.  Some arthritis medications can also lead to scarring of the small airways in the lungs, leading to shortness of breath or other breathing problems.

In the future, I plan on writing a blog all about RA nodules, because that can form anywhere on the body.  It seems that RA can affect just about anything.  If you are having any complications with your lungs, please be sure to tell your Rheumatologist in case there is something going on.  Never be afraid to tell your doctor of any symptoms you are experiencing, even if you think it's something small.


 


 

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Friday, January 21, 2011

Rosacea - Does is coincide with RA/JRA?

Thank you Kristen Bryant from RA Chicks for asking this!  First, what is Rosacea? Personally, I don't know much about it, so for those like me, let's explain what it is.  Rosacea is a skin disease of adults (more often women) in which blood vessels of the face enlarge resulting in a flushed appearance.  It is a chronic and potentially life-disruptive disorder primarily of the facial skin, often characterized by flare-ups and remissions. There are four types of Rosacea:



  • Subtype 1 (erythematotelangiectatic rosacea), characterized by flushing and persistent redness, and may also include visible blood vessels.
  • Subtype 2 (papulopustular rosacea), characterized by persistent redness with transient bumps and pimples.
  • Subtype 3 (phymatous rosacea), characterized by skin thickening, often resulting in an enlargement of the nose from excess tissue.
  • Subtype 4 (ocular rosacea), characterized by ocular manifestations such as dry eye, tearing and burning, swollen eyelids, recurrent styes and potential vision loss from corneal damage.


Experts are not sure what causes rosacea. It tends to affect people who have fair skin or blush easily, and it seems to run in families. Rosacea is not caused by alcohol abuse, as people thought in the past. But in people who have rosacea, drinking alcohol may cause symptoms to get worse (flare).  Rosacea often flares when something causes the blood vessels in the face to expand, which causes redness. Things that cause a flare-up are called triggers. Common triggers are exercise, sun and wind exposure, hot weather, stress, spicy foods, alcohol, and hot baths. Swings in temperature from hot to cold or cold to hot can also cause a flare-up of Rosacea.

The question comes to play... does Rosacea coincide with RA/JRA?  I honestly had a realllly hard time trying to finding any information on this topic. I did find one study that was done on the drug Hydroxychloroquine sulfate (Plaquenil), which is used to treat Rosacea and RA.  The study was done with women aged 40-60+, who had Rosacea and how the drug helped.  The top condition that they also shared was RA.  You can read more about it HERE.  It seems there hasn't been much research done into this topic, but the two are treated with similar drugs and both go through flare-ups.  The one advantage I did find, is that they are treated with the same medications, so it will help eliminate taking a bunch of medications for different illnesses, and eliminating it down to one. 

I did a poll in RA Chicks and asked how many of them who's suffered from RA, also have Rosacea and do they seem to coincide with one another.  Out of the 9 ladies who responded who have Rosacea and RA, they were diagnosed separately and years apart.  Here are some of their claims:
One woman said: "I have Rosacea and RA. My rosacea is controlled..no flares..unlike my RA". 
Another woman said: "I have RA and Rosacea (pretty bad at the mo - more than just red patches). I think medications and some foods do not help the Rosacea but it also gets worse when I am stressed. Nothing seems to have worked for me of a topical nature and some days it looks worse than others". 
One more said: "I have had Rosacea for 15 years. Diagnosed with RA 3 years ago. I keep it under control with RX creams and Anti Biotics. Lots of stress will bring on a break out." 
They don't believe they coincide with one another, they claimed that when stressed they both seem to flare.  However, when the Rosacea flares on it's own the RA doesn't seem to be affected, and vice versa. 

I also looked into to see if Rosacea and Lupus are connected.   The answer to that, is also, NO.  Rosacea is not a symptom of lupus. Rosacea and lupus both can cause a red rash on the face, but the rashes are very different. The rosacea rash can be all over the face, while the lupus rash is normally seen in the butterfly pattern.

I apologize if this article wasn't more helpful, there just doesn't seem to be ANY research out there between Rosacea and Rheumatoid Arthritis.  I researched online for days, and tried asking around.  As of now, it doesn't seem like the two coincide with one another.  On a note, it does seem that once you're diagnosed with one auto-immune disease, it seems somewhere down the line, you will end up being diagnosed with more.  That is just my personally opinion, based on what I have seen in the past.  Hopefully in the future more can be done about this, so those who do suffer from both have some answers. 

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