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!

Tuesday, June 28, 2011

A breath of Remicade

Medication blog #4: Remicade

Trying to remember the dates of all the medications I've taken is tough, so I apologize if I can't remember correctly! 23 years of medications is way too many, haha!  I took Remicade after Enbrel, so if I remember correctly that was about 2004ish.  Remicade is given intravenously (IV) over the course of a few hours.  I was still a patient at Children's Hospital in Boston at the time, so the medication was given there in this special room where other children also received IV medications.  I took the Remicade without problem for a few months, I can't remember exactly how long (I want to say about 4 or so).  After the few months, I was sitting in the chair with the Remicade in me for a little while, when I felt my face get real hot and tight... my throat was closing and I couldn't breath.  I turned to my mom, who was with me, and she had a look of horror on her face and ran to the nurse.  I started to black out a bit with about 4 or 5 nurses around me doing everything they could to help me.  Come to find out, I had went into anaphalytic shock.  Probably one of the most scary moments of my life.  They paged my doctor and he came down to check on me.  He said it was odd that I'd have a reaction now after so many months, so he asked if I wanted to wait an hour to calm down and then try again.  I agreed.  He stayed with me, and we tried again.  Same thing happened!  He asked if maybe we could wait a week and try again (silly as it sounds, we were trying to be sure it wasn't an anxiety attack or anything else).  So again, I agreed.  The next time they gave me Tylenol and Benadryl; the Benadryl was given through IV, to calm me down.  Low and be-hold, it happened again.  So, it is definitely true that I am allergic to Remicade.  It may sound crazy for me to have tried two more times, but it is so difficult to find a medication for me that works, we exhaust all possible avenues before completely stopping one and moving on to another.  This is a very rare side effect, so don't be discouraged if this medication is a possibility for you -- I've know many RAers who are on Remicade and have had wonderful success with it.  Now, let's discuss what Remicade is, and other possibly side effects.

Remicade is in a category of medications known as a biologic, which is when products in the medication is derived from living sources such as humans and animals.  It is in a sub-class known as tumor necrosis factor-alpha (TNF-alpha) inhibitors. It works by blocking the action of TNF-alpha, a substance in the body that causes inflammation.  It is used to treat a number of auto-immune diseases such as Rheumatoid Arhtitis, Crohn's disease, ulcerative colitis, psoriasis, and more.  Remicade is used to control symptoms, it is not a cure for any of these diseases. 
Remicade can cause various side effects, and can occur up to 2 hours after you received your medication.  Usually where your IV is administered, the nurse or doctor will keep you for a little longer after the medication is given to watch for any side effects that may occur.  Common side effects are stomach pain, nausea, heartburn, headache, runny nose, back pain, white patches in the mouth, vaginal itching, burning, and pain or other signs of a yeast infection.   Serious side effects include any type of rash, including a rash on the cheeks or arms that gets worse in the sun, chest pain, swelling of the feet, ankles, stomach, or lower legs, sudden weight gain, shortness of breath, blurred vision or vision changes, weakness in arms or legs, muscle or joint pain, numbness or tingling in any part of the body, seizures, yellowing of the skin or eyes, dark colored urine, loss of appetite, pain in the upper right part of the stomach, unusual bruising or bleeding, blood in stool, pale skin, red, scaly patches or pus-filled bumps on the skin.  *As with all medications, this is not a complete list.  If you experience any kind of side effect either while at the hospital or at home, it is important to contact your doctor as soon as possible in case of a serious allergic reaction.*

Remicade can also lower your ability to fight off infection, as with every other auto-immune treatment. It's important that if you do get sick, to speak to your doctor right away.  Some infections require you to skip your infusion until the infection goes away. 

Remicade didn't work for me, unfortunately I had that rare reactions which seems to happen a lot to me.  Always discuss different options of medications with your doctor, there are so many options out there!  Stay tuned for more medicine blogs coming up as I continue the medicine blogs series.  As always, thanks for reading and for those who don't know, you can now "Like" my blog on Facebook!! Here is the direct link: https://www.facebook.com/pages/JRA-Journal-of-a-Rheumatoid-Arthritis-Chick/123301637755084

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Tuesday, June 21, 2011

The study of Enbrel

Medication Blog #3: Enbrel

When I was a sophomore in high school, back in 2000, I was asked by my rheumatologist to try out a study for a new medication for my JRA and Uveitis.  Rheumatologists and scientists try to find one medication that will work for both, since many eye drops don't work as well as medications like TNF blockers.  Uveitis is a rare eye disease, and as I was one of the few patients he had who had both, I agreed.  The study was held at the National Institutes of Health in Bethesda, Maryland.  NIH paid for the hotel and airfare, so it was a great opportunity and I was happy to it try out.  The study lasted about 2 years, and had an impact on my life in many ways.  I was getting onto a plane on 9/11/2001 to go to one of my appointments, while that's a whole another story, it still was a major part of what impacted my life.  I met so many children with many different ailments who were so worse off than me, it made me feel grateful for what I have.  I made some great friends, one whom him and I stayed pen-pals for years and even still talk through facebook to this day.  Of course, the study was also a great opportunity to try out a new medication and see if it works.  I had to mointer everyday of how I felt and any side effects that came up. Let's discuss Enbrel and I will share my experience with it.

Enbrel (etanercept) is a type of medication called tumor-necrosis factor (TNF) inhibitors. It works by blocking the activity of TNF, a substance in the body that causes inflammation.  It is used to treat symptoms for a number of autoimmune diseases, such as Rheumatoid Arthritis, Psoriatic Arthritis, Juvenile Rheumatoid Arthritis (or known today as JIA), Crohn's disease, and more.  Enbrel is an injection that comes as a solution (liquid) in a prefilled syringe, an automatic injection device, and as a powder to be mixed with a provided liquid.  It is injected subcutaneously (under the skin) and usually given once or twice a week.   Usually the first dose is given by a nurse in your doctor's office, then if all goes well, you do the injections yourself at home.

One major side effect of Enbrel is that it lowers your ability to fight off infections, as does any TNF blocker medications, so when your sick it is important to contact your doctor who prescribed Enrbel.  Sometimes it is required for you to skip some doses of your medications until you're better.  Other side effects include: redness, itching, pain, or swelling at the site of injection, headache, nausea, vomiting, heartburn, stomach pain, weakness, and/or cough.  Major side effects include: seizures, bruising, bleeding, pale skin, blistering skin, rash, hives, itching, swelling of the eyes, face, lips, tongue, throat, arms, hands, feet, ankles, or lower legs, difficulty breathing or swallowing, rash on the face and arms that worsens in the sun, numbness or tingling, vision problems, weakness in the arms or legs, and/or dizziness.  *It is important to contact your doctor immediately at first sign of ANY side effect.  This is not a full list of side effects, because everyone reacts differently to any medication.*

The study I was in for Enbrel was used to see if it worked for both my JRA and Uveitis (inflammation of the eye).  Enbrel seemed to work so well for my joints, I was able to walk around Washington D.C. all day with no complaints, it was the best I have ever felt while having this awful disease.  I was really hopeful that I had finally found a medication that worked.  Unfortunately, while it seemed to work excellent for my joints, it did nothing for my Uveitis so I had to stop the medication and find something new.  I know many others who are on Enbrel and love it, it has worked excellent for some people who don't have to worry about Uveitis. 

Tuesday, June 14, 2011

Oh, Prednisone!

Medication blog #2: Prednisone

This is the second in a series of what I'm calling medicine blogs.  Some new patients get overwhelmed with the amount of medication options, and it can get stressful trying to explain our treatment to family and friends.  I figured it'd be a good idea to do a bunch of blogs of different medicines that I am familiar with, so I can help those who'd like to, to understand them a bit better. I hope they help, and as always feel free to share my blog with friends and family! :)
Prednisone is in a category of medicines known as a corticosteroid. Corticosteroids are a class of steroid hormones that are produced in the adrenal cortex. Prednisone is very effective as an immunosuppressant drug, which means to inhibit or prevent the activity of the immune system.  It is used to treat: asthma, COPD, rheumatoid arthritis, allergic disorders, ulcerative colitis and Crohn’s disease, adrenocortical insufficiency, hypercalcemia due to cancer, thyroiditis, severe tuberculosis, lipid pneumonitis, multiple sclerosis, nephrotic syndrome, myasthenia gravis, and as part of a drug regime to prevent rejection post organ transplant.

I have been on and off Prednisone ever since I was diagnosed, that was almost 23 years ago.  Prednisone works great as a short-term medicine, but it can cause problems when used long-term because of the many adverse side effects.  I know some short-term side effects include: increased appetite, fluid retention resulting in weight gain, puffyness of the face (also known as moon face), high blood glucose levels,  insomnia, euphoria and, rarely, mania (in particular, in those suffering from Bipolar disorders I and II).   I know when I am on Prednisone, especially higher doses, I get increased appetite, moodiness and weight gain. 

Long-term side effects include:  Cushing's syndrome, truncal weight gain, osteoporosis, glaucoma and cataracts, type II diabetes mellitus, and depression upon dose reduction or cessation.  Of these long-term side effects, I have been diagnosed with glaucoma, a cataract and osteopenia. 

Major side effects include: increased blood sugar for diabetics, difficulty controlling emotion, difficulty in maintaining train of thought, weight gain, facial swelling, depression, mania, psychosis, or other psychiatric symptoms, unusual fatigue or weakness, mental confusion / indecisiveness, blurred vision, abdominal pain, peptic ulcer, infections, painful hips or shoulders, steroid-induced osteoporosis, osteonecrosis, long-term migraines, insomnia, severe joint pain, cataracts or glaucoma, anxiety, black stool, stomach pain or bloating, severe swelling, mouth sores or dry mouth, avascular necrosis, hepatic steatosis. 

Minor side effects are: nervousness, acne, rash, increased appetite, hyperactivity, frequent urination, diarrhea, removes intestinal flora, leg pain/cramps, sensitive teeth.

*Obviously this isn't an entire list of possible side effect.  As with any medication, no matter how long you've been on it, you should contact your doctor with any changes you notice and side effects that may come up.

From being on prednisone for so long, I have had some long-term side effects develop over the years.  My growth has been stunted - I'm 26 and only 5 feet tall, I officially stopped growing when I was still in middle school.  My jaw and face are probably the most effected, I've had teeth pulled and have difficulty opening my mouth very far.  As I stated above, I also was diagnosed with glaucoma and a cataract only a few years after being on prednisone.  I also have recently been diagnosed with Osteopenia, even after being an avid milk drinker and dairy eater for years to prevent this from happening. 

While some of these side effects sound scary, prednisone is an excellent short-term medicine. It has helped me countless times feel so much better during an awful flare-up from my RA. Prednisone can be used to treat many things, but as always it's important to discuss treatment before-hand with your doctor, to make sure you're on the right treatment for you.

Tuesday, June 7, 2011

The love/hate relationship with Methotrexate

Medication Blog #1: Methotrexate

This is going to be the first in a series of medication blogs.  Patients with Rheumatoid Arthritis take many different medications, because everyones body responds differently.  I decided to do this blog on Methotrexate, because not only are a lot of my fellow RAers on it, I am as well.  I know many of our friends and families always ask about our medicines, so I figured if I did some medicine blogs, explaining all about the individual meds, maybe those who want to understand, can do so much better. 

I first took methotrexate about 15 years ago, everything seemed to be going well, until six months later.  I started having difficultly breathing, and my mom rushed me to Children's Hospital in Boston (where I was seeing my rheumatologist at the time).  There, they found out that the methotrexate was causing toxic lung poisoning, so it was stopped.  Now, 15 years later, we've run out of options for me because I either severely react to them, or they stop working.  Since my body has gone through so many changes since then, I agreed with my doctor to try it again.  I was on the pills from September 2010 - April 2011 (about 5 months), and it wasn't working too well so I started the injections on the highest dose given to patients with RA.  I also take Humira along with it, so far I've been feeling really good.  I know not to get my hopes up with this, so I will wait and see.  In the meantime, let's discuss Methotrexate, why it's given, the side effects, and much more.

First off, what is Methotrexate?  It is a medication known as a toxic antimetabolite, or chemotherapy.  It interferes with the growth of certain cells in the body that grow quickly, such as cancer cells, bone marrow and skin cells.  It is used to treat certain types of cancer, severe psoriasis and rheumatoid arthritis.  Methotrexate is usually given when other medications have not worked.   The way it works, is by "killing" or slowing down the progress of the bad cells and works a little differently with each prognosis.  In cancer, it works by slowing the growth of cancer cells.  In the case of psoriasis, it works by slowing the growth of skin cells to stop scales from forming. And in rheumatoid arthritis, it works by decreasing the activity of the immune system.  In rare cases, Methotrexate is sometimes used to also treat Crohn's disease and multiple sclerosis. 

Methotrexate is given either in pill form, or injection and the dosage varies by condition and the severity of it.  It is very important to follow the instructions given by your doctor, since this is a very toxic drug, side effects are very serious.   Some side effects include, but are not limited to:  dizziness, drowsiness, headache, swollen tender gums, decreased appetite, reddened eyes, hair loss. Some more serious side effects include: blurred vision or sudden loss of vision, seizures, confusion,weakness or difficulty moving one or both sides of the body, loss of consciousness.  It is very important to contact your doctor with ANY side effects, even if they seem minor.  This is a TOXIC medication that has caused harmful effects to some people. 

There are many options and medications out there for patients with these illnesses.  It's important to discuss all treatments with your doctor and chose the one that works best for you.  As great as Methotrexate seems to work for some, it can't work for everyone and there are serious side effects. I wish everyone the best of luck with whatever medications you are taking.   If there are any medications you'd like to see in the medicaion blog series, please list them in a comment.