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! 

Interview with Lauren Vaknine

Lauren Vaknine is 27 years old from England, author of the book My Enemy, My Friend, spokesperson for the Royal London Hospital for Integrated Medicine and is also the youngest trustee of the British Homeopathic Association.  I met Lauren through this very blog!  She commented on one of my posts because her and I had similar stories, I emailed her and a friendship formed.  Lauren also suffers from JRA, since the age of 2 as well as Uveitis.  With the awful side effects from traditional harsh medicine, Lauren's parent's decided to try a different, more safe route for their child.  They decided to try homeopathic methods instead.   Here is an interview I had with Lauren about her lifestyle.


You were diagnosed at the age of 2 with JRA, similar to me. What medications were you put on and what were the side effects from them?

We were offered steroids, as in 1986 this was pretty much all that was available. My parents thought that steroids were too strong for a two year olds body, and despite the fact that the doctors advised that the best way to beat childhood arthritis was to give very large doses of steroids at the beginning, my parents disagreed and looked around for other options as they did not feel comfortable with the long term side effects. It turns out that fifteen years later, the paediatric rheumatologists who thought that prescribing large doses of steroids to young children early on was the best way, realised that they were wrong and had to apologise to all the children who were now teenagers and adults with hormone problems, bone problems like osteoporosis, deficiencies and growth problems. These new health problems were all side effects of the steroids and can never be reversed. So it took us a while to realise, but we did eventually see that my parents had done the right thing – and so did the doctors!

When were you diagnosed with Uveitis, and how has that affected you over the years? I was diagnosed with Uveitis a year after the JRA was diagnosed, when I was 3. When a child is diagnosed with JRA, they look out for Uveitis, especially if that child is a girl. During my childhood I only flared maybe once a year, usually in May / June time when the tree pollen count was high. Once every few years I’d have to have a steroid injection into the eye. Since diagnosis I have been taking steroid eye drops into the eye. After fifteen years of lots of eye drops and inflammation, I got a cataract. The cataract couldn’t be taken out because the flare was so high and the inflammation wouldn’t come down because the cataract was aggravating it so it was a catch 22 and they wouldn’t operate. It was the first time I ever went on a conventional medication and I was nearly 18. The doctors wanted me to take Methotrexate to get the inflammation down in the eye enough for them to operate but within 10 months of being on Mtx, the arthritis that had stayed in 4 joints for 16 years had now spread to every joint in my body. It also made my hair fall out and damaged my liver. This made me realise that an integrated approach to my healthcare was the only way forward. Eventually they operated on the eye and removed the cataracts which had, after 5 years, caused me to go blind in the right eye. The eye now has no lens and it cannot be replaced but the inflammation calmed down a lot.

When did you change to homeopathy methods?
I never changed. My parents looked around for other options when I was diagnosed and all they were offered was steroids. After extensive research they decided that homeopathy would be the best route for us and it has been. The reason being that arthritis is an autoimmune disease which means your immune system is fighting itself all the time. If this is the case you need to build that immune system up. The conventional medications unfortunately make the immune system shut down in order to be able to work and control the inflammation. So even if the inflammation is helped, you are left with a plethora of uncontrollable side effects. Homeopathy teaches your body to fight for itself, and essentially, to work as a whole, instead of fighting itself. It teaches your body to fight off illness and it builds up your immune system so that your body is well equipped to fight illness itself without chemicals that make you sick. The way I see it is that if you have an autoimmune disease, your body is weak as it is, so anything that makes it weaker can’t be good. Instead of using chemicals that fight the body, why don’t we work on improving our immune systems through natural sources! It really is that simple but it will not be spoken about in your doctors surgery so you have to do the work for yourself!

What natural supplements work best for you?
The thing with homeopathy is its catered for you. The remedy you are given on any given day is dependent on what you are going through at that moment. Where the pain is, where the swelling is, what relationship troubles you may be having, how the weather affects you, what you are dreaming. It is completely 100% individualised which is the wonderful thing about it. Apart from homeopathy the other things I find very helpful are meditation – the fastest way to a healthy body is a clear mind, acupuncture – at least once a month if not more, physio and hydro. And in terms of supplements I take vitamins C, D and E with selenium, fish oils, calcium and acidophilus. I also maintain a very healthy diet. Although you must treat yourself sometimes!

What made you write your book and how do you feel about it's success?
I wrote the book for no other purpose other than to share my story and show people the turn around my life has had. 8 years ago I was in a wheelchair and through perseverance and an integrated approach to my healthcare I live a relatively normal life and I wanted to show others that this is possible. I want to reach parents of children being diagnosed and tell them what options they have so that they don’t go down the road of having to deal with all the side effects of conventional medications years down the line and I wanted to tell people how much an illness affects you emotionally and that it must be dealt with early on. Counselling is important and support from your family but your family needs to know how to deal with it too and there is not enough help out there for this.

I feel very fortunate that my book has been a success. Since having it published I have become the youngest ever trustee of the British Homeopathic Association and patient spokesperson for the Royal London Hospital for Integrated Medicine. I now do talks at conferences, parliamentary events, private events and more to tell people my story and I am now working with the Health Select Committee at the Houses of Parliament to try and find a way to have emotional support and counselling offered to all families of children diagnosed with chronic or long term illnesses.

I hope that my book gets to the right people and that in some small way I am able to help them.

What would you like to see for the future for JRA and RA research?
I would like homeopathy to be more of an option given to patients instead of a last resort. Everyone is different and has to make their own decisions on what will work for them but they should at least be given the option and if the doctors don’t tell them about it, most people will think that medications with long term side effects are their only option. People should be free to keep their bodies healthy and there isn’t enough support for this cause. I would also like for there to be more research into Uveitis and how it can be helped.

My Enemy, My Friend is now available for eBooks!! You can purchase it on Amazon here: http://www.amazon.com/My-Enemy-Friend-ebook/


Please be sure to visit Lauren's website! You can also purchase the paperback book here.   http://www.laurenvaknine.com/

Catching up!

Hello readers! Sorry I haven't written a blog in a few weeks, life just gets so busy sometimes, especially around the holiday season.  Things have calmed down a bit, so I have some time to sit down and write. 

How was every one's holiday season?  My family celebrates Christmas, and we had a great day!  It's so nice spending time with family.  I had a few stops to make, so the day was busy but fun.  New Years Eve was spent going out to dinner with my fiance, and coming home to watch the ball drop.  We were in bed by 12:10am! Ha! It was such a lovely evening though, I am not complaining!

My knees were bothering me a lot over Christmas, not much stiffness, but I was experiencing some bad pain.  I'm not sure what it was, but it seemed to slowly go away.  I see my Rheumatologist next Wednesday (11th), so we will see what he has to say and how my blood work is.

I'm trying to regain some muscle strength, and get some exercise.  It's so hard to do when my fatigue knocks me on my butt, and when I do exercise I tend to overdo it when I feel good, and put myself into a flare.  My fiance got me the Kinect for xbox for Christmas, along with some dance games.  The games are such a workout, I'm sweating afterwards!  They're so fun, and you're dancing away that you don't even realize that you're working out - it's both good and bad!  Trying it out to get some exercise, along with my exercise bike, alternatively a couple days a week.  I am starting off slow, and seeing how I do, then I will progress from there.  Hopefully I can gain some of my strength back and it will help my fatigue, rather than hinder it.  Time will tell.  What does everyone else do for exercise?!

I've been seeing my chiropractor for aout 5 weeks now, and it seems to be helping a lot.  My back pain has lessened significantly, and I already see an improvement with my posture.  I still see him three times a week, and will probably keep that up for a while.  If anyone has back pain, even just muscle pain from stress, I'd suggest seeing a chiropractor! 

Anyways, working on some new blogs for the future.  As always, thanks for reading! :)

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.