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! 

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.