medicating ra

Medicating

 Medications….pills, injections, infusions, and that God-awful prednisone. 

You will find if you keep up with me that I am not an advocate for prednisone.  That seems to be the fix all from doctors when you have a chronic illness. The immediate side effects are great. You feel better and the inflammation gets under control. The long term side effects are devastating. My Momma who raised me was actually my step mom and had Lupus. I watched her doctor give her large doses of prednisone years ago and it nearly killed her, crippling her to her bed. I never want to use Prednisone long term, but sometimes it is necessary to keep moving. I call it the necessary evil until I can find a way to fight out of this disease.

At the end of 2020, I was feeling pretty good. Though I had the classic joint stiffness in the early morning it was manageable. I was able to work the stable, groom my horse, care for my other animals and clean house again as well as work my two jobs. (I am reminded to write about the help that I received in 2019 and 2020. I will get to that in another post.) 

But by the end of 2020 I did not need as much help. Then my Daddy died suddenly with a massive heart attack and the stress of his death brought back bouts of inflammation. Then in early 2021 my horse CJ had to be put down due to suffering a stroke. It was devastating for me emotionally, and because RA is a green monster that loves stress, physically. I started going backwards in my health journey. My quarterly bloodwork at my rheumatologist started showing increased liver enzymes. I was diagnosed with fatty liver in 2015 as an incidental finding on a chest xray, so I really did not think much of it. However, by summer 2021 my liver enzymes were getting dangerously high and my rheumatologist said he could no longer in good faith keep me on Methotrexate. I literally begged him to keep me on Methotrexate through October since my only child was getting married in early October. He said no. I was devastated. When you balance emotional pain and physical pain, it is a tough trapeze act. Taking me off Methotrexate was excruciating. The only option given to me was doses of prednisone to get me through. Since I am not disabled and still have to work, it really did not leave me much choice but to take the Prednisone. The one pill that I hate the most is the only option that I had to keep moving. And because my liver enzymes were high I could not take ibuprofen. So this started 6 months of Prednisone until we could see if my liver enzymes could come down. 

In January of 2022, I saw my rheumatologist again and told him, flat out, something had to give. My liver enzymes had come down but he would not put me back on Methotrexate. I was near remission taking MTX injections. This really sucked. We discussed biologics and I was prescribed Humira. When I was first diagnosed with RA, my rheumatologist made it sound like a biologic was a long way down the road. Now here I was just 2 and a half years into my diagnosis. It really was not sitting with me well. But neither does feeling like a truck has hit you every single day that you wake up. 

Putting on fake smiles was getting harder and harder. Inflammation is a really bad monster. Someone can look perfectly well on the outside but inside they are dying. I will say though that more and more people were starting to say comments like “you look really tired”. Well, yes I am sure I do! I have a battle raging inside of me that no one can see unless you look at my lab results. That is a sad truth with autoimmune diseases. It is an invisible monster that wrecks havoc on your life. So when you hear someone say they have an autoimmune disease, show some compassion. Unless you live it you cannot imagine waking every morning fighting a battle with your worse enemy….yourself.

There are no clear answers to controlling RA. That is why it is called “practicing medicine.” It is a very confusing, baffling journey.

Sources:

(See:  https://www.mayoclinic.org/steroids/art-20045692)

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