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The Gut RA Connection

By now  most of us know  that our intestinal system is home to trillions of  bacteria busy doing their job populating their ecosystem in the lining of out intestines. Collectively they are called the gut microbiome or gut flora. The beneficial bacteria in the gut have names that we see on the list of ingredients in a good yogurt such as  lactobacillus acidophilus. These bacteria help maintain a consistent environment, protect the body from foreign invaders, communicate with the immune system and the brain.

The gut microbiome is complex and gut imbalances have been implicated in the development of RA as in other inflammatory diseases.  “Larger-than-normal populations of  specific gut bacteria may trigger the development of diseases like rheumatoid arthritis and possibly fuel disease progression in people genetically predisposed to this crippling and confounding condition,” according to Mayo Clinic Researchers.

An imbalance in the gut microbiome coupled with a genetic predisposition to RA may be the initiating factor in the RA disease process. There is a lot of research being done. Using probiotics  medically as therapy for RA is a ways off, but a probiotic supplement is a reality for today.

Fermented foods are excellent for the intestinal flora. Fresh sauerkraut, good quality yogurt, kefir, buttermilk, sour pickles, pickled beets are good examples. Commercial preparations such as, NOW’s Probiotic-10 25 Billion is what I use. I may not be able to undo my RA, but I should be able to help my body by improving the microbiome in my intestinal flora.

 

At the infusion center

I am taking a big chance. I went to the infusion center for a dose of Actemra.

Actemra blocks the activity of the messenger cytokine, Interleukin-6.

It was the  same routine: sign in at the reception desk, weight, vital signs, 20 questions. I am in a recliner with my feet up. IV started. Blood work. Tylenol and Benadryl to avoid side effects. I think this was the routine for all my infusions. My son, David, was with me. The Actemra infused without incident. I didn’t die. We were there for three hours.

I had mixed feelings about this drug. It stemmed from several considerations. I have had a lot of bad luck with the biologics. The last was the TNFi Remicade. After two doses I became so ill I thought it was over. I felt weak and lethargic. No appetite. It lasted a month and I survived. I was reluctant to try another.

Actemra was the last one available to me.  My RA Doc feels the drug is safer than no drug because the progression of RA is not safe either. I finally agreed.

The biologics are considered successful if there is a 20% response. With Actemra plus MTX an average of 43%, over three respected studies,  had a 20% response. That means RA patients felt 20% improved. Over these same studies 25% had a 50% response and 9% had a 70% response. This means that 77% of patients had a positive response to Actemra. And it means 34% had a good response. So it works.

Major infection is the biggest concern as a side effect/complication. It is the biggest concern for all the biologics as the biologics suppress the immune system. A previous exposure to histoplasmosis may mean a reactivation of the fungus. I has histoplasmosis in the 1970s.

Bowel perforation is another complication.  I really don’t know the state of my intestines. Hope they are strong and sturdy. Hepatitis B reactivation. Increased BP and increased cholesterol. Rare cases of multiple sclerosis. All possible. Big risk.

Why am I taking the risk? My RA relentlessly continues to get worse.  I was relying on Medrol more than I should. When I developed a problem hip joint, my RA Doc thought I might have avascular necrotic hip which usually occurs with chronic steroid use. Fortunately, that wasn’t the case. I curtailed the use of Medrol. This left me with MTX, hydroxychloroquine, meloxicam which helped somewhat,but not enough.

I have started taking chrondroitin and tumeric. I was also reestablishing my yoga practice. Stopped when my hip problem became severe (badly torn labrum).

Actemra became the next choice.

Real Life and RA

Having a debilitating, chronic disease makes me much more aware of others who struggle to have a normal life with a chronic disease. For those who have RA,  pain is a central issue. The exhaustion that comes with inflammation is also the issue. Life becomes a daily struggle for those who wake up in pain, and who need to make that pain manageable so they can carry on with their daily duties of children and/or work.  Depression is common among those with RA. Easy to see why.

I am not easily depressed. I can see too many of the little pleasures of life that make it worth the downside. But there are moments when the struggle to put pain in its place becomes just too much to live with. That is a big, clear signal for a time out. I can have a time out and so can many who have family to take the children or have a job where hours are flexible. But there are many who are  scraping by so need to work, just to keep up the health insurance and to keep food on the table.

What to do?  What works for me is to change something.  Anything. Something small. Break the rut for a day. Take the kids to the park for a PB&J supper. Give the baby a bath early not at bedtime. Stop by the library on the way home from work and check out a book on a topic you are curious about. Maybe herbal remedies. Change your routine. Try it. No miracle. No fairy godmother swooping in. Just you. Making life livable for you.