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RA Journal 10-17-16

I took the last pill in the medrol pack this morning. I am back to sleeping again. I feel better.  My feet as well as my hands remain a problem. Swelling. Stiff. Pain. But manageable.
After being a recluse for a week, I made it out to Kohl’s to use my 30% coupon yesterday.  Fall clothes and a few Xmas presents. Panera’s for squash soup and salad. Michaels for a Lion’s Brand wool that is not easy to find. It is cranberry, bulky and beautiful. Home to rest.
Today is another sunny day in ABQ. Still a warming fire is pleasant. Life is good.
The medrol pack has saved me again. I was very ill and was getting discouraged. I don’t know how long this improvement will last but I will enjoy it while I have it. It feels like a stay of execution.
I came to the conclusion a while back that my RA is progressive and that there is no cure. There is only symptom relief. For some, the biologics hold the promise of damage control. That promise at best is for 50% of RA patients at a helpful rate of 50%. With luck, Remicade should offer me that much. The question is if the benefit outweighs the side effects.
Remicade is a TNFi. It stops the production of TNF which is a component of the body’s inflammatory process, the body’s defense system. Remicade helps stop the inflammation caused by our immune system. The downside is that since the immune system is impaired, the risk of infection increases.
When I was on Orencia, I had two bad flu’s. I was laid up a week with each. They were about 6 months apart. Prior to Orencia I rarely had a flu. I started Remicade in August. So far no infections.
However, after the third loading dose, 10 days ago, I had a severe flare and was overwhelmingly wiped out. It was the medrol pack that saved me. My next infusion is scheduled for December. My rummy will probably change my infusion times from 8 weeks to 6 weeks since I am still having such problems.
However, will I have the same reaction that I did this time? If I do, I may not want to stay on Remicade.
In RA, as in many disorders, there is the trade off of risk of side effects versus benefit. At this point for me it is wait and see. In the meantime, I can enjoy my life in New Mexico.

3 Comments

  1. I have read your article and it is informative. I found it to be interesting. My mother suffers from RA and I am aware of some of the challenges that RA sufferers experience from day-to-day. I wish you the best in finding the best relief methods that works for you.

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  2. Thank you. I wish your mother well also. My RA is called late or elderly onset. It once was thought to be milder but now is considered to be severe with more erosions and activity than normal. I am fortunate to have an excellent rheumatologist to help me maneuver through this challenging disorder.

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