Rheumatoid Arthritis

Kyla, Why-Ya Joints Hurt?

Rheumatoid Arthritis

When I was twelve and barely figuring out gluten and middle school, my knees hurt all the time. I danced and I'm double-jointed and I used that as an excuse. I told my mom and not much later I was at a Rheumatologist for the first time. He looked at my knees asked me a couple questions and without blood work told me I had "Growing Pains".

My knees still hurt all of the time, I was constantly tired, I was sick. Two years later I told my pediatrician again, and again, she sent me to a Rheumatologist.

This Rheumatologist was much better. He did blood work. It showed that I had Rheumatoid Arthritis. Rheumatoid Arthritis is an autoimmune disease where your body attacks its own tissue. This is especially painful in your joints. Definitely not "Growing Pains". It was a scary appointment.

He began to explain to me that I was going to be placed on a new treatment plan, a very intense treatment plan. The first medicines I started were Methotrexate, Prednisone, and Folic Acid.
Methotrexate is a form of chemotherapy. It is an immunosuppressant and basically stops your immune system so that it can not fight itself anymore. Which also means it can not fight what it's supposed to. The flu, a cold, an infection becomes dangerous.
Prednisone. Anyone who has ever been on Prednisone or heard of it probably rolled their eyes when they read it. Prednisone is a steroid. Prednisone is anti-inflammatory. RA is caused by inflammation in your body which is why you need to take an anti-inflammatory drug. I personally did not feel the benefits of Prednisone. It has many side effects. I, unfortunately, felt a lot of the side effects. Some of them include moon face which is when your face begins to round out. I gained a lot of weight. I had skin discoloration. Headaches. And many more. I am not a Prednisone fan.
Folic Acid works to protect you and your cells. It's a vitamin and works to protect your cells from the medicines.

I don't take these medicines anymore. Not every medicine works for everyone.

That rheumatologist was not a pediatric doctor. When these medicines did not work he gave me medicines that were a little too strong for me. When treating a pediatric RA patient it is important to be careful because they are still growing. I got a second opinion with a third Rheumatologist and she changed my medications again.

The third Rheumatologist was a pediatric doctor but a rude lady. My parents and I accepted that because she was a "good doctor" and it was our last resort.

I've done infusions which did help bring my markers down and I take Plaquenil to keep them that way.

I have only had two Retuxamab infusions and only two because they are very strong and also come with a list of side effects. Both times administered with 1,000 mg of steroid. During the first one, my legs went numb which is an unusual symptom for the drug. It was done in the hospital. They could not get a hold of the doctor and the charge nurse had a lot of attitude. It was a terrifying experience!

I had to switch back to the original Rheumatologist. "Growing Pains" Guy. He's okay he didn't remember our first encounter. During the second infusion, he slowed the administration of the drug down and it was a much better experience.

The main goal when combatting RA is to bring your RA factor down; the amount of inflammation in your body. One way to do this is to change the food you eat.
Foods with a lot of starch cause more inflammation.
For my RA I have done elimination diets, AutoImmune Protocol (AIP diet), and followed the fodmap diet. I've seen several nutritionists.
On top of eating gluten-free.

At the moment I do not have my RA under control. The infusions and Plaquenil worked for a while but I need to do something different. This is going to change soon when I start my Autoimmune Hepatitis treatment plan.

Many of the medicines used to treat RA are used for AIH.
So we will see!

What I have learned from this is to always trust your instincts. If the original doctor caught the disease the first time it would not be as uncontrollable and I would be taller.

This has taught me to my own advocate and I think it is a really important lesson for someone with chronic illness.