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! 

Actemra

A while ago I did a series of medicine blogs, all of which were medicines that I had tried in the past.  I've seen a few people asking about information about other medicines, and are having trouble finding information on search engines.  So, I've decided to do a few more medicine blogs about those I have left out.  Hope these help you all who have had some trouble finding information! 

Medicine Blog #7: Actemra

As I said, I've never taken Actemra before so I have no personal information about it.  I have done extensive research and compiled all that I could find here for you, to hopefully help those who are wondering about it.  There isn't a lot of information out there, because Actemra is a very new medicine on the market.  It was approved by the FDA on January 11, 2010 and on April 15, 2011 it was approved by the FDA to be taken in combination with Methotrexate. 

First, What is Acetmra, and how exactly does it work?  This was taken directly from Acetmra's website: ACTEMRA works by being specifically designed to block the action of the IL-6 messenger cytokine, and is the only medicine to do so. Cytokines send signals to white blood cells to fight germs and viruses. Unfortunately, people with RA have too many cytokines in their body, including IL-6. The white blood cells then work too hard and attack the body, resulting in the signs and symptoms of RA.

So Actemra works by getting rid of the extra cytokines, unlike Enbrel and Humira which block TNF (tumor-necrosis factor - the substance that creates inflammation) or Methotrexate which blocks white blood cells from growing too quickly (please view my other medicine blogs for more information).  It is usually given after any of these, or other medications have not worked. 

A study was done with patients who suffer from severe Rheumatoid Arthritis.  Some were given 8mg/kg and others were given 4mg/kg every 4 weeks.  59% of those who took the 8mg/kg and 48% of those who took the 4mg/kg showed 20% improvement in a number of swollen and tender joints and the CRP number was lowered after 24 weeks.  Another study was done on patients who took Actemra in combination with Methotrexate.  Those results showed that patients who were on 8mg/kg of Actemra plus Methotrexate: 56% showed 20% improvement, 36% showed 50% improvement and 20% showed 70% improvement after 52 weeks (1 year). 

How is Actemra given?  It is given intravenously (IV) by a nurse or doctor in a medical office or hospital.  The medicine takes about 1 hour to receive, and is usually given once every 4 weeks. The doasge is either 4mg/kg or 8mg/kg, depending on the severity and what other medications the patients are on.   

It is important to discuss all current medications (including supplements) with your doctor before starting Actemra, as some medications may interact with it.  Some of those medications include: blood thinners, aspirin or other NSAIDs (ibuprofen like Advil or Motrin), naproxen, some cholesterol-lowering medications, and oral contraceptives.  This isn't an entire listing, so please make sure you have a full list if everything you are currently taking for medications!

What side effects can occur with Actemra?  Side effects may include, but are not limited to:  headaches, runny nose and/or sneezing that don't go away, hives, itching, swelling of the eyes, face, lips, tongue, throat, arms, hands, feet, ankles, or lower legs, difficulty breathing or swallowing, dizziness or fainting, change in bowl movements/habits, unusual bleeding or bruising. 
As I said, these are not all possible side effects, and it is important to contact your doctor with any sign of something going on. 

Bitterness....

Feeling a bit bitter about my illnesses today...I'm just so sick of being stressed out all the time about what medications I have to take, what foods to eat, and which foods to avoid... Also, I see others complain about small, mundane stresses in their life. To them it's a big deal, and a lot of stress on them, to me it's small in comparison to what me, and others like me, have to deal with on a daily basis. I WISH I only had to stress and worry about "normal" things.... So let's step into the mind of what it feels like everyday to live with chronic illnesses....

First, I've been on and off a steroid known as prednisone for about 22 years. While it works great in lowering inflammation, it has caused me so many other problems! First it caused glaucoma and cataract in my left eye when I was 8 (I already had Uveitis when I was 3). The cataract has since been removed, but the medicines used to treat the Glaucoma, make the Uveitis flare, and the medicines used for the Uveitis make the pressure in my eye go up from the Glaucoma! They both counteract each other and I have to constantly be seen by an eye doctor to make sure it's well controlled. I've had 5 glaucoma surgeries over the years because the Uveitis flared and I had to increase the medication. Every time I get even a headache in my eye, I have to be seen by my doctor to make sure it's not the Glaucoma or else my vision will go away forever. My left eye already looks funky because of the vision loss I've had, and makes me so self conscious, I'm constantly worrying about how it looks. It makes me feel ugly, and I hate it.

Then the prednisone caused bone loss in my neck and hip, known as Osteopenia. I have to make sure I am taking Calcium with Vitamin D supplements twice a day, and making sure I am eating foods that contain those supplements (milk, yogurt, broccoli, etc). However, I also have Irritable Bowl Syndrome and have to watch what I eat or else I will end up in severe pain. Foods I am told to avoid are caffeine, fiber and what else, but dairy! Again two things that counteract each other! So do I eat the dairy so my bones don't loose anymore density and I end up brittle? And in doing so end up hurting my stomach? Or vice versa?! Something I have to think about every time I go eat something.

Then, the medications that I've taken over the years for my Rheumatoid Arthritis are known as immunosuppressants, which lower my overactive immune system. Because I've been on so many of them since I was 3, my antibodies known as IgA are completely wiped out and I can never get them back. My body has actually built up a resistance to them, so if I ever needed a blood transfusion and the IgAs were in it, I'd go into anaphaltic shock (medical alert bracelet is worn for this!) So now I have to give myself an IV of some antibodies known as IgG and have to be extremely careful with germs. I can't be around people who are sick, and when going out in public, I have to constantly watch what I touch and wash my hands all the time! If and when I do get sick, I have to immediately contact my Immunologist so I can be put on a special antibiotic and be monitored by him. If I am sick too long, I have to switch to another antibiotic, and other possible means of treatment may be needed.

I'm also on a chemotherapy drug known as Methotrexate. Yes, it is CHEMO, but not as high a dose as cancer patients need. It still makes my hair fall out, and I have to take a vitamin weekly to help decrease the loss. If I forget to take it (since it's only 1x a week, and has to be taken 12 hours after the methotrexate, I do sometimes forget), my hair falls out so bad, that after one shower, my drain is covered in hair. My hair is thinned from it, and again makes me feel self-conscious about the way I look, and am constantly worried about wearing my hair certain ways.

To be normally healthy, you're supposed to eat right, drink lots of water and exercise. Which I try to do all three. However certain healthy foods like fruit and vegetables, I have to be careful of eating too much because fiber can upset my stomach. Exercise I can't do if my RA is flaring, and when I do exercise, I'm always in so much pain afterwards I have to pace myself and wait days between or I'll put myself into a flare! Exercise also completely exhausts me, fatigue is another symptom from my illnesses. I would like to be able to work out and look and feel good about myself, but how am I supposed to with all this crap?! I try as often as I can, believe me I do try.

There is obviously more, I didn't even cover all of my illnesses, but these are my daily worries. These are things I have to constantly think about, and take over my life. Sorry to have just rambled on, but apparently I needed to get it off my chest. Add to it me being out of work, and having to worry about normal, everyday things like paying bills, buying food and medicines, family drama, my looks, worrying about the people I care about, Christmas shopping!, etc. It's enough to make you want to rip your hair out! Yes, I have my days where I want to scream WHY ME?! But I don't, because I know things could be a lot worse off, and everyone should stop and think about that as well. Stop stressing and worrying over the stupidest things, and be thankful for what you DO have. Sometimes it is hard to see it that way, but try as often as you can. Otherwise, you'll be a miserable old grump forever.

Let's add some moisture to the air!

When winter hits, do you regret turning your heat on because it's so drying you get chapped lips, and itchy dry skin?! This blog will be a little different, I won't be discussing medicines or illnesses, but ways to add moisture back into the air of your house/apartment.  Dry heat is awful, and my apartment heating system is the worst! I always have very chapped lips and dry itchy skin.  My eczema doesn't help matters, but I was sick of freezing my buns off to avoid using the heat.  Humidifiers are obviously the best way to add moisture, but they're so expensive and since I don't have the extra cash, I did some research into ways I could save myself some money.  Here are some helpful tips to add moisture back to the air, naturally!

Fill a crock pot with water, and keep on, with the lid off, for the day!  To add something fun, I add spices to make it a potpourri as well.  I sometimes add nutmeg, cinnamon sticks, and vanilla.  Also orange or apple peels.  It doubles as adding moisture to your house and makes it smell good!! :)  You can also do this with a pot on the stove, but the water tends to boil away real fast. 

When it's real dry, I'll put bowls around the house, and boil water and fill them up.  The steam makes the water evaporate faster and get the air nice a humid.  Some people use clear bowls, and buy candles or decorative flowers to make them more appealing to guests. 

If you wide enough radiators or base boards, you can always place a bowl or pot of water on top, so when the water heats up, the water will evaporate into the air. Water doesn't need to be boiled to evaporate!

Drying your clothes indoors can help.  Hang wet clothes or towels, especially some items that can't be dried, around your house!  Hang them on coat hangers on doorways, shower curtain rods, or on the back of chairs.  If you'd like, dry all your clothes this way and save money on electricity by not using the dryer.

Houseplants are an excellent way to fight dry heat!  Plants naturally add moisture to the air themselves, so keeping them well watered will especially help.  The more plants you have, the more moisture! So buy some nice greens! :)

When you cook on the stove, leave the lids off! 

Leave a pot full of water on the stove (burners off), while baking something in the oven.  The top of the oven tends to warm up enough to heat the pot.

Take a shower with the door open! Not only will this help spread the moisture through the house, but it can also help prevent mold and mildew.

If you own, or ever wanted to own, a fish tank, that is an excellent and decorative way to beat the dry heat!

When it rains, leave the windows open a crack.

Open your dishwasher to dry dishes. The steam from the dishwasher will be released into the air improving the percentage of humidity in your house

It's always important to monitor the level of moisture you're putting into the air.  Too much can cause mold and mildew to form.  It's best to not try ALL of these methods at once, but maybe one or two, so you can balance the levels evenly.

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.

Medical Update

For the past year or so, I've been experiencing severe upper back pain.  I ignored it for so long because I am so sick of new symptoms and illnesses popping up, and seeing so many doctors.  My fiance, Adam kept suggesting that I call, he was concerned because no matter how much he massaged by back, the pain just kept getting worse. It was getting to the point where my actual bones were so sore, I was woken up during the night from the pain being so bad, I was in tears.  I finally took Adam's advice, and called a chiropractor.

After doing research, I found one within walking distance from my apartment (about 1/4 a mile), and he received all 5 star reviews from his patients! I didn't see a single review below 5 stars, so I knew this would be the one I should call.  I called this past Tuesday, and was able to get in and be seen THAT afternoon! Wow!  He did a physical exam, asked a lot of questions and then sent me for X-rays so he could see what was going on in there.  I was able to go back yesterday (Thursday) to get the results!  I found out that I have mild scoliosis in my mid and lower back.  He said this could also be causing my severe menstrual cramps I've been having, since my back is out of alignment, it could be causing strain on the pelvic muscles that cause cramping. 

We then discussed treatment options, including exercise, diet and treatments performed in the office.  He will be giving me adjustments, and have to use something called The Spinalator table, which is a table I lie down on my back on, that contains chiropractic rollers that go up and down my entire spine.  According to Access Equipment Corp, “the rollers lift and separate each segment of the spine. The rollers also elevate to increase the level of pressure applied to the back. The rollers are then moved up and down the spine by a travel system."  He did both that day, and said I'd need to come in three (3) times a week for treatment.  Normal, healthy people take about 4-8 weeks to fully heal, but with my illnesses and immuno-suppressant medicines, I could take as long as 8-12 weeks. 

Both the adjustment and table didn't hurt, and felt really great.  I go again tomorrow, and hope this is able to help my pains.  I am also going to look into starting some yoga, as I know this will help not only my back, but my RA as well.  I found a DVD that is called "Yoga for Arthritis", and is gentle on my joints, as normal yoga I can not do, it hurts too much.  It may be a long while before I feel some relief, but I feel better now that I have some answers and a plan of action!

Cold weather and stiff joints

Brrrr!!! Winter is coming, the technical first day is December 22nd this year.  Some people enjoy winter, and find it almost romantic.  Cuddling under blankets, sitting in front of a roaring fire while sipping on some hot chocolate.  While this may sound nice to some people, others especially those with arthritis, think otherwise.

Winter is a pain for those of us who suffer from RA -- literally! I can feel the cold weather in my joints though, some people find this expression so crazy but it's very true. Especially when I wake up in the morning on cold days, my joints feel extra stiff and achy.  The cold weather makes it tougher for us to get up in the morning, taking longer than usual.   I believe this happens, because when we're cold, we tend to curl up, especially at night, in the morning resulting is us being stiff and in pain.  I searched around the Internet to see if there was any research as to why this may happen, there was hardly anything, but I'll share with you what I found.

This statement, taken from a research study done at the National Institutes of Health (NIH) explains why us RAers may be able to feel a change in weather. "As the weather changes, so can the pressure in your joints. If you think of the tissues surrounding the joint as a balloon, Gourley explains, the balloon around the joint will expand a little when air pressure is low. The expanding tissues put pressure on the joint. People can actually feel changes in air pressure in their joints, which is why some people say they can predict the weather by the pain in their joints." 

To help prevent us curling up, and getting stiff joints, it's important to stay warm.  When going out, dress in layers, warm your car up before getting into it, and at night use an electric blanket or warm clothes and blankets in a dryer before using them.  Drinking warm liquids, and keep your joints moving can also help prevent them from getting stiff.  During the day, I'll get up and just walk around my apartment, and keep repositioning myself on the couch so I'm never in the same position too long. 

The cold temperature associated with winter can not only affect Rhuematoid Arthritis, but many other illnesses as well.  Raynaud’s disease is a condition in which the blood vessels quickly narrow, reducing the flow of blood and causing the skin on the fingers, toes and even the nose to temporarily turn white, then bluish.  It's important for those with Raynaud's to wear warm socks, and warm mittens instead of gloves, keeping your extremities warm.  Sjögren’s syndrome is another illness affected.  With Sjögren’s the immune system  attacks the body’s moisture-producing glands, leading to dryness of the eyes, mouth and other tissues. Cool, dry weather can exacerbate the situation. Those with this condition, need to add moisture back to the air and body to help.  Using a humidifier to raise the humidity level in your home and use lotions after bathing to keep skin moist. Use artificial tears for dry eyes and keep a water bottle on hand to sip to relieve dry mouth. Be careful about using mouthwashes with alcohol or over-the-counter cold remedies, either of which can worsen dryness.  Breathing problems such as Asthma, can also cause difficulty with breathing.


It's important that if you experience any symptoms to discuss them with your doctor.  Keep warm keep moving and be very careful when walking on icy grounds.  Wishing all  a warm, pain-free winter!

Thankful for...

Did you know that the first U.S. Thanksgiving holiday was held in 1621 at Plymouth in present-day Massachusetts?
I live in Mass, about 40 minutes away from Plymouth.  It first began as a celebration for a good harvest, and was celebrated on all different days each year.  It wasn't until 1863 when Abraham Lincoln was president, did he decide that Thanksgiving be celebrated on the last Thursday of November each year.  In 1941, president Franklin D. Roosevelt changed Thanksgiving to occur on the fourth (not always the final) day of November, and signed a bill with Congress, making it a national holiday. 

Thanksgiving being my favorite holiday, I was thinking of writing a blog for everyday of November something I'm thankful for, instead I'll just compile it into one blog.  I love Thanksgiving so much, because it isn't about presents or material things, like Christmas sadly seems to have become for most people.  It's day we can be thankful for all we have, and spend the day with love ones fill with good food, love an laughter. 

30 Things I am Thankful for:

#1:  I am thankful for my wonderful fiance, Adam.  Who I'm not sure I would be where I am today, without him.  He's the most loving, caring and understanding person I've met, especially through all my health endeavors.  I love him with all of my heart, and more.

Adam & I

#2: I am thankful for one of my dearest friends, Diana.  She's another caring, kind person who I can totally be my dorky self around.  We have a connection that I don't share with others, and I think it's what makes our friendship stronger.  I love her very much!  (Mischief Managed)

#3: I am thankful for my other dearest friend, Brenna. Her and I met through having RA together, and share health stories.  Her and I can totally, 100% understand each other, and be able to comfort one another in ways others can't.  I love her and happy to have met her (if only we had met sooner! socks!)

#4:  I am thankful for my two cats, Harley and Mrs. Nesbitt.  While some may find this silly, they are great companions when I'm feeling sick.  I swear they know when I'm feeling down, they'll cuddle with me or do something that totally makes me laugh.  They just know how to make me feel better without even trying.

#5: I am thankful for my health.  While my health is pretty crappy, and I am constantly having something go wrong, it's made me the strong person I am today.  I know I'd be a completely different person if I hadn't been dealing with this all my life, and I'm not sure I'd like the person I was without it.  Also, things could be way worse off than they are, and I am VERY thankful for that. 

#6: I am thankful for my Dad.  He passed away last year, and am incredibly sad that he's gone, and miss him very much.  I am thankful for the time I was able to spend with him, and know he is with me, always.

My dad & I

#7: I am thankful for my family.  I have such a large family, and they're so fun to be around!  It's sad we only get together on holidays because of every one's busy lives, but it is still wonderful to be able to have that time together.

#8: I am thankful for being able to go forth with my photography.  While I'm still new, and learning things everyday with it, I'm lucky to be able to use my creative eye in ways that make me happy!

#9: This may sound ridiculous, but I'm thankful for books.  Whenever I am feeling down, I love to get lost in a book, getting wrapped up in a story, crying and laughing with the characters.  It helps to get lost in a world and let my imagination run wild, it helps me forget the things I worry about.

#10: I am thankful for Modern Medicine.  Without it, I'd be stuck in a wheelchair not being able to move, with my body fastly deteriorating, or I'd probably be dead.  A lot of the medicines I am on, or have tried in the past are indeed harsh, they still have helped me have a [hopefully] longer life.

#11:  Humor!  Laughter is indeed the best medicine.  I am so thankful for people making me laugh (especially Adam, Diana, and Scott), and being able to make others laugh.  Most of my jokes are corny and I sometimes mess up movie lines, it's fun to laugh! Hahaha!

Brenna & I, being silly!

#12: I'm thankful for having a roof over my head, a place to call home.

#13: I'm thankful for the food I'm able to eat.  SO many are without food, I wish I had the means to help those in need.

#15: I'm thankful for my wonderful doctors, especially my Rheumatologist who not only goes out of his way to make sure I'm cared for, but actually listens to what I have to say and let the decisions be mine.  He doesn't tell me what to do, but rather give me options and his opinions. 

#16:  Thankful for the men and women who serve our country.  While I think the war is ridiculous, they still risk their lives everyday.

#17:  I'm thankful for the food I eat everyday.  So many have to go without food, it's sad.

Harry Potter Cupcakes I made

#18: Thankful for education, I was lucky to be able to go on to college and further it as well.

#19: Heat! Thankful to have an apartment with working heat.  Winters get cold, and some people can't afford the oil, or live in places with inadequate heat.

#20:  I'm thankful for the wonderful friends I've met online from RA support groups.  They make dealing with this dreadful disease so much easier! Thank you all!!!

#21: Thankful for the Internet and the ability to write this blog! I'm able to connect with others and reach out and help spread awareness of RA and other illnesses.

#22: Memories, yes I'm thankful for the good and the bad.  Without them, I don't think I'd be able to make some decisions in life. 

#23: Love.  Thankful for the ability to love and be loved.  It's such a wonderful feeling!

#24: Thankful for the wonderful change of seasons I am able to experience.  Even though some interfere with my health, I love seeing the changes in the earth, how beautiful it all appears. 

Fall tree, I took this!

#25:  Thankful for chocolate, boy is it yummy and makes me happy!

#26: Water, so thankful for that! Water is so important to keep our bodies hydrated and healthy.

#27: Baking!! I absolutely love to bake, and having the ability and means is awesome.  I love baking food for others to try, food makes everyone happy! ;)

#28: So thankful for music! Music is so soothing, calming and a great stress reliever.  Having a fiance who plays guitar, definitely helps in that aspect.  Music makes the soul happy.

#29: Thankful for my friends, who just make my life better by being in them.

#30:  And finally, I'm thankful for being able to just wake up everyday and enjoy life the best that I can.

Secret to beautiful skin?

Winter is approaching, faster than I'd like to admit.  Here in New England, we had a snowstorm already! Many were without power for days, luckily I live close to the water so I barely got any snow.

The reason I bring up winter, is the icky dry skin!  The cold weather doesn't dry the skin out, it's the dry heat that does.  When I was younger, I had really great skin.  I never really suffered from acne, and could use any lotion and body wash out there.  A few years ago, my body decided to change all that and give me a hard time.  I was diagnosed with severe eczema, and started getting some acne on my T-zone.  I had to stop using all lotions, body washes, perfumes and laundry detergents, and had to use all "fragrance free"  materials instead.  Ever since, I still have trouble getting my skin right.  I still have smooth skin, but every once in a while I get breakouts of my eczema.  My skin becomes unbearably itchy and dry. I'm on a prescription, that is as thick as Vaseline and since it's a steroid, I can't use it that often.  I started to do research into more natural things I could to do to help me lessen the eczema flares.

A few things kept popping up over and over again, mostly the number one answer to beautiful smooth skin, was drink more water.  Okay, I already drink my 8+ glasses a day, I'm constantly running to the bathroom to pee, so I know I don't need anymore.  Then I kept seeing something else pop up... something for a while I just ignored thinking it sounded ridiculous, because it stated that could help clear dry skin and acne.  Until I had one of the worst eczema flares recently.

It was a Friday night, I was sitting at home and my scalp (which is one of the spots my eczema seems to affect me the worse), started itching like crazy.  I couldn't stop itching, it was getting to the point where I was making myself bleed.  I started freaking out, of course I checked my scalp for any signs of lice, just in case, but nothing.  So I went online and found that same thing that kept popping up and figured it probably wouldn't hurt to try. 

Olive Oil.

Yup.  Where it definitely seems it would help dry skin, but acne also?  I figured I'd try it.  First I warmed it up a little in the microwave, so when I put it on it would help open my pores and seem in.  I smothered it throughout my scalp then wrapped it in a towel.  I then dabbed a very thin layer on my face, and set a timer for 30 minutes.  After the time was up, I washed my hair in the shower, and rinsed my face.  The scalp was instantly cured of any itching, and my face felt smooth.  Normally throughout the day, my T-zone on my face gets oily... but after using the olive oil, my face felt smooth and oil-free all day.  I even woke up the next day to my skin still feeling not oily! I was amazed, especially because I didn't seem to get any reaction to it. I decided to try it out for a week and see what happens.

Before I get to how it has worked for me, let me explain why olive oil is so good for our skin, especially those who have sensitive skin!   Apparently using extra virgin olive oil for skin and hair care dates back to ancient Greece.  The reason why using this oil alone works so well is the antioxidants and vitamins it carries.  Olive oil contains Vitamins A and E, which "help repair and renew skin that has been damaged from overexposure to sun, air pollution, and other modern-day environmental hazards – like cigarette smoke and fast food." (Source: oliveoilsource.com)  These vitamins have the ability to naturally stimulate our bodies cells, resulting in firmer, smoother and healthier skin.

What's great is research has shown that all natural extra virgin olive oil works better than some of the most expensive skin care products out on the market.  In fact, some products use olive oil in them but charge outrageous amounts of money for it!  A 25 oz bottle of extra virgin olive oil cost me only $6 at Walmart.  Don't worry about brand name either, olive oil is olive oil so I bought the Great Value Walmart brand and still got amazing results.

Here are some ways to use olive oil in your everyday skin and hair regime.  These methods use plain extra virgin olive oil (EVOO). Some other research online has different "recipes" using lemon juice, Castor oil, almond oil, etc with it.  I've only used it alone, and seem to get great results.

Use as a Skin Moisturizer:
When used a a moisturizer, olive oil penetrates deep in the skin to provide smooth skin.  It is suggested to use as a night cream, putting it on before bed, since it does take longer than normal cream to absorb.  This is what I do, I rub some all over my face about an hour or so before bed, and then in the morning rinse off my face with warm water in the shower. Others suggest also using it when you're fresh out of the shower, just dabbing your skin dry so it's a little damp and the pores are open to best penetrate.  You only need a thin layer, since it does get greasy.  Also, make sure the oil has time to dry since it can damage some clothing materials.  This is another reason why it is suggested to be used at night. This has worked wonders for my eczema.  I usually put some on after getting out of the shower as stated, just dab it on areas where my skin gets dry, my skin is so smooth!  You can also add a few tablespoons to your bath to get an all over body moisturizer! I do this once a week and my skin is remarkably smooth! Just be careful because the tub may get slippery, especially when getting out.  I use a bit of Dawn dish soap when I'm done, and wash down the tub.

Used as a Facial Wash
Warm a little olive oil in the microwave for about 30 seconds (you don't want it hot!).  Dab a thin layer over your face and let it sit for 30 minutes or so (you can do less if you don't have time).  Sometimes I'll turn the shower on and shut the door to get the steam in the bathroom to open my pores.  I'll hop in the shower and wash my body, avoiding my face to let the oil penetrate before I rinse it off.  Or, you can wash your face with warm water (no soap), pat dry. My acne has cleared up, and haven't seen anything new.  My T-zone is no longer oily or shiny.  My skin feels soft, smooth and healthy!

Used as Hair Conditioner:
I suffer from dandruff and extremely dry scalp, so again this has worked for me! There are two different ways to use olive oil for the hair, as a dandruff control and for deep conditioning.  Once a week I dab some olive oil throughout my scalp, wrap my hair in a towel and let it sit for 30 minutes, then hop in the shower and wash normally. For deep conditioning, massage a mixture of equal amounts of olive oil and water into your hair. Leave on for 5 minutes, then shampoo and rinse. Your scalp will benefit from healthy conditioning; your hair will respond with more shine and strength.

Pros and Cons of using olive oil?
Pros: smooth skin, cleared acne, soft beautiful hair, no itchy skin or scalp
Cons: tough to rinse out of hair if you use too much, is a little greasy, takes a little while to dry.

You definitely need time to be able to use this method, so using it as a night regime seems to work best for people with busy lives since you can dabble it on your skin before bed, and wash off in the morning.  Some people use soap when washing it off, but when I tried this it dried my skin too much.  Every one's body is different, so try different experiments.  Some people claimed adding a little lemon juice to the facial wash helps clear up stubborn acne a lot.  If you do research, all different recipes of olive oil treatments pop up based on your individual needs.  I wish I could write about them all, but felt it would be best to write what I have experimented with and you can go from there.  I am very satisfied with using this, even after just two weeks.  It is said that the results are slow, it make take up to a month before you fully notice a difference.  I've noticed my acne has cleared, and my face feels smoother and not oily anymore.  Other than that the look of my skin is the same.  Hopefully after using it everyday for a month, my pores will be tighter and my skin will look better.  I was going to post a photo of my face, but it is still too soon to tell.  If after a month my skin looks different, I will post a photo! If you'd like to know my further progress, feel free to ask.  :) 

Relaxtion....

Relaxation.... it's nice when one can find the time to actually relax and enjoy some "me" time once and a while.  Everyone has their own way of relaxing, whether it be to play or listen to music, workout, read, nap, cook...etc.  Everyone has something that relaxes them, and gives them time to just focus on that and nothing else. 

Relaxing is an important part of life, to help elevate our stress, which can really impact our lives.  Stress itself can cause many health problems, including depression, obesity, high blood pressure, skin problems and more!  Trying to find ways and the time to de-stress can be stressful in of itself, but it is vitally important.  Try to find some time to relax and enjoy time to yourself, even if it's for half hour a week, at least your giving yourself some time to get rid of that negative energy, and take in the positive. 

Personally, I have a few different activities that relax me, which I'm sure for most people there are more than one.  One of my favorite activities I do to relax is reading.  Getting lost in a book is relaxing, because you get involved in the story and forget about things in your life that are bothering you.  Let your imagination run wild while trying to imagine what the characters look like, what the scenery a certain chapter is taking place in, is just an awesome feeling.  I try to read as often as I can, my favorite genre to ready is fantasy and sci-fi, because I can really let my imagination run wild!  Another favorite activity of mine is baking.  Baking is relaxing because I can concentrate on what needs to be put into the recipe to make it turn out right... and of course, I get a yummy treat when I'm done!  My favorite food to bake is cupcakes, as many friends of mine will know.  I love being creative with not only what goes into the cupcake, but the decorations on the outside.  Again, I love using my imagination to relax me! 

Probably one of the weirdest things I do to relax is shower.  Not just washing my body clean, but I absolutely love to just sit in the tub with the shower head on me.  Not a bath, just the shower head.  There is something about it that is just so relaxing! I know it's probably bad, I'm wasting water....but it honestly feels so good.  I really have to be careful with baths because of my eczema, but the warm water not only feels good on my joints, but I can feel my whole body relax.  I just sit back and close my eyes and let my mind wander....sometimes I think of nothing, sometimes I think of all the things bothering me or worrying me.  There is just something about it, that calms me down.  I could sit there all day some days....ahh. Usually I do it every once and a great while, but I seem to be doing it more often.  I don't seem to have any more stress than normal lately, but it just feels so good.

Like I said before, relaxing is really important for our health.  I know people who lead busy lives find it impossible to do, but try.  When I was working, I'd read on my lunch break (while eating my lunch) to forget about work for a little while.  Sometimes if I could eat lunch at another time, or skip it, I'd go for a walk on my break.  Just a slow walk, alone to let my mind wander.  These are just some examples... it's important to find something that relaxes YOU, and of course finding the time to do so.  I wish you all luck, relaxing and stress-free lives! (I know with the holidays coming up, relaxation will be VERY important not to kill our families lol)

If you'd like to read a great article on how stress affects our everyday lives, and ways to help eliminating it, check out this website: http://www.womenshealth.gov/publications/our-publications/fact-sheet/stress-your-health.cfm#e

Humira

Medicine blog #6: Humira

This will be the last in the series of medicine blogs for now.  I am also going away on vacation for two weeks, so there will be no blogs in that time.  I will be full ideas when I get back though!  Today's blog is about Humira, which is what I'm currently on.  I've been on Humira for about 7 years now, and I take it every week, which is rare, most people take it every other week.  Over the years I've been on it alone and with other medications.  I'm currently also taking Methotrexate, which was the first medicine blog I wrote.  Humira seems to work well with no reaction, but it can't work alone.  We've had a tough time finding the right combination - sometimes one combination will work for a little while, then I'll either have a bad reaction or flare up.  So far, after 10 months of slowly increasing the Methotrexate and then switching from pills to injections, I seem to be doing well.  I won't get my hopes up yet though, because you never know what can happen.  The only thing I don't like about Humira is the sting! When you inject, it stings real bad.  Even after the 7 years it still bothers me.   Let's take a closer look at Humira.

Humira is an injection that is in a class of medications known as tumor necrosis factor (TNF) inhibitors. It works by blocking the action of TNF, a substance in the body that causes inflammation.  It is used to help treat the symptoms of auto-immune diseases such as rheumatoid arthritis, crohn's disease, ankylosing spondylitis, psoriatic arthritis. 

Humira comes in a solution that is injected under the skin (subcutaneously), in either a pre-filled syringe or pen (see photo to the right).  The pen is an automatic dispenser of medication, and some people find it easier than actually injecting.  I've used the pen in the past when it first came out, but personally I prefer the injection.  The pen dispenses the medicine for you quickly and accurately, but I like to be in control of how fast or slow the medication goes in me.  It is normally injected every other week, but can vary by condition.    Humira can be injected anywhere on the front of your thighs or stomach except your belly button (navel) and the area 2 inches around it.  To prevent any bruising, redness or soreness, you should try to use a different site each time you inject.  It is also important to inject at least 1 inch away from a spot that you have already used.  Never inject into an area where the skin is tender, bruised, red, or hard or where you have scars or stretch marks. 

Common side effects that occur with Humira are: redness, itching, bruising, pain, or swelling in the place you injected Humira injection, stomach pain, nausea, headache, back pain.  I tend to get redness and bruising sometimes with my injections, and the medicine stings sometimes also.  If I take the Humira out of the fridge for about 20-30 minutes before injecting, it tends to help eliminate the sting  a bit.  More serious side effects are: numbness or tingling, problems with vision, weakness in legs, chest pain, shortness of breath, rash, especially a rash on the cheeks or arms that is sensitive to sunlight, new joint pain, hives, itching, swelling of the face, feet, ankles, or lower legs, difficulty breathing or swallowing, fever, sore throat, chills, and other signs of infection, unusual bruising or bleeding, pale skin, dizziness, red, scaly patches or pus-filled bumps on the skin.   Humira may also lower your ability to fight off infections, so if you do get sick it is important to speak to your doctor.  Sometimes when sick, you need to skip a dose or two of the Humira to help get over the infection. 

As always it is important to contact your doctor immediately if any of these, or other side effects might happen while on this or any other medication! 

Humira seems to be one medication that has sort of worked for me over the years.  I've had horrible allergic reactions with many other medications, and am at the point now where I don't have many options left.  I've never had a reaction to Humira, so my doctor keeps me on it with conjunction with another medication.  Currently, it's Methotrexate and for now it seems to be doing okay.  If this doesn't work, it will be time to stop both medications and start from scratch.  It would be great to just find that one medication that works, and works well.  There is no cure for autoimmune diseases like RA, but there are medications that can help us feel somewhat normal.  I hope that all of you fellow RAers, and others who suffer from illnesses, find medications that work for you. 

Thank you to everyone who continues reading my blogs, I truly appreciate it!  As I said in the begining, I will be taking a two- week vacation so no blogs for those two weeks. I'm going on a road-trip to visit my good RA friend, Brenna and then to visit my fiance's dad!  Brenna and I wrote a blog together back in March, so those who are interested can read that as well. :)  I will write one when I get back, and will tell you all about my fun trip! 

Have fun, be safe! xo

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

Why is Chemotherapy used to treat RA, and Why are we told to ignore the side effects?

Thank you Tracie from RA Chicks for asking this question.  I know it blows my friends and families mind when they hear I'm on chemo, and say "do you have cancer now?!"  I then have to explain the best I can that no I don't have cancer, chemo is used to treat RA also.  Taking the chemo comes with severe side effects, and we are usually told to "ignore" or live through them if they are helping our joints.  I decided it was a good time to do research into how and why chemotherapy works with rheumatoid arthritis.

It may sound alarming, but a number of chemotherapy drugs are used to treat rheumatoid arthritis, usually in lower doses than when used to treat cancer.  RA is an autoimmune disease in which an abnormal immune reaction causes the inflammation of the joints. When used to treat cancer, chemotherapy drugs are given to kill off tumor cells, but in cases of RA the drugs are given to slow cell reproduction and decrease the metabolic processes that can lead to the inflammation.

The chemotherapy drugs most often used to treat rheumatoid arthritis include methotrexate, Imuran, and cytoxan. Some of the same side effects can occur as occur during cancer treatment, but they are usually not as severe because the drugs are prescribed at lower doses. 

Some of the less severe side effects of chemotherapy include: Acne; chills and fever; dizziness; flushing; general body discomfort; hair loss; headache; infertility; irregular periods; itching; loss of appetite; lowered resistance to infection; miscarriage; nausea; sensitivity to sunlight; sore throat; speech impairment; stomach pain; swelling of the breast; unusual tiredness; vaginal discharge; vomiting.

Severe side effects include: Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); black or bloody stools; blood in the urine; bone pain; calf pain/swelling; change in amount of urine; chest pain; confusion; dark urine; diarrhea; dry cough; enlarged glands; fatigue; fever or chills; inflammation of the pancreas (stomach tenderness, nausea, vomiting, fever, increased pulse rate); irregular heartbeat; mental changes; mouth sores; muscle weakness; persistent sore throat; red, swollen, or blistered skin; seizures; serious infection (herpes, hepatitis, blood infection); trouble breathing; unusual bleeding or bruising; unusual pain and discoloration of the skin; vision changes; vomit that looks like coffee grounds; yellowing of skin or eyes.

I am currently on Methotrexate and am experiencing hair loss and low energy.  These are common side effects, and we are given vitamins and are told to live through these minor side effects.  Why are we told to ignore the side effects?! Obviously if you are experiencing anything bring it up to your doctor, so he/she can make sure there isn't an underlying cause or it doesn't get worse. 

After doing research into this, I couldn't find too much, but from experience I know RA is very difficult to treat.  If they find a medicine that seems to be working very well (no pain, inflammation or signs of the RA), it's a good sign.  If the side effects are minimal and livable, in a way, they are worth it.  I know I'd rather live with thin hair or a day of feeling nauseous than weeks and weeks of not being able to move or function in life. 

Overall, there is no cure for RA and for now we learn to live with the medications that do work for us.  If side effects become so bad they are not livable, than you should not be on that medicine anymore.  ANY side effect should be mentioned to your doctor, no matter how minor.  You could wake up with a rash one morning, ignore it, and a week later having difficulty breathing.  Never let anything go without being mentioned, your doctor will not mind, I promise!  If he does, than maybe it's time to find a new doctor! I wish everyone the best of luck and hope you all find medicines that work well for you, without too much side effects.