Tuesday, April 21, 2015

R is for Rheumatoid Arthritis

This is a topic that I, sadly, am very familiar with. I won't go into a ton of detail here, but if you want to read more, I do have a RA blog, Homesteading with RA, (I have been neglecting badly though) and it details my life with it. The link for it is in the menu bar under my heading picture as well.

First off, RA is not an "old person" disease and it is not "just arthritis". It annoys me when someone says that they have a touch of arthritis. I am not saying that they do not have arthritis, but it can not be compared to RA. RA is a chronic systemic inflammatory disease.

There are hundreds of different types of arthritis. Osteoarthritis and Rheumatoid Arthritis are the most common ones. Osteoarthritis usually effects older people, where as RA does not discriminate against age. There are some people in my RA support group that were diagnosed at 18 months.

OA is when bone rubs against bone. Yes, it hurts a ton. RA is when your joints are inflamed. Your immune system is all out of whack and your body starts to attack your joints. RA also affects your organs such as your lungs. Because I am also an asthmatic, I constantly worry about my RA getting into my lungs. RA is also very painful and makes your joints stiff and makes you very fatigued.

I was also diagnosed with Fibromyalgia a year after my RA diagnoses. Fibro is chronic pain in your muscles. Your nerve endings are all out of whack and are constantly firing. It is very painful as well.

I have noticed that RA has been made a little more "popular" if you will on tv commercials. Or maybe it is just that since I had been diagnosed, I have noticed those commercials more. Enbrel and Humira are the most shown commercials on tv. One thing that annoys me, as well as other RA sufferers, is how it portrays us in these commercials. It makes it seem like if you take this medication, you are practically cured. There is no cure for RA.

I started out with a medication called Methotrexate. It is a chemo medication and is used to treat leukemia in children in very high doses. I took 30 mg a week and that made me sick to my stomach. It made me feel for the little kids having to take this crap. It also raises the levels in your liver, so you have to get blood work every month.

I then went to Enbrel and continued with the Methotrexate. Sick, sick, sick and I had an allergic reaction to Enbrel right after the first injection. I tried it for 6 months and then I was taken off it. It never worked for me.

Next up was Remicade. I was still taking Methotrexate as well. My Remicade was done as an infusion. I would be stuck to an IV for at least 3 hours once a month. I slept through it most of the time. It also made me tired and sick for a few days after. I was on that for 6 months as well. We even upped the dose to the highest you can go. It did nothing for me as well.

Enbrel, Humira and Remicade are all TNF blockers. None of them worked for me.

Currently I am on Actemra. It is also an infusion, but only takes an hour to do. I usually bring my laptop with me and watch a movie. Actemra is IL-6 receptor. I also had to stop taking the Methotrexate because the Actemra also raised my liver levels. I am on the highest dose level for Actemra, but it is working for me, finally. I was also put on Simvastatin because Actemra raises your cholesterol levels and mine has always been high. Mine is hereditary and not linked to diet/exercise. I do still need my pain medication every day and I still get breakthrough pain, but it is nothing like what it was before.

One day there will be a cure, but probably won't be in my lifetime.

How I spend the time during my infusions. Watching the newer Star Trek movie on my laptop and reading Grit magazine during last months infusion. This month, I worked on posts for the challenge.

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