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.

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!

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